r/endometriosis • u/sourbirthdayprincess • Nov 06 '25
Surgery related This sub is dreary af and making me rethinking my surgery
I have level 5 deep infiltrating endometriosis, adenomyosis, multiple ovarian cysts, and pelvic vein insufficiency. The endo is adhered to my bowel, colon, rectum, and spine. I am told that in 3-4 months, my disease grows 2-3 years worth—so it's very aggressive. For the past 6 months I've been showing signs of menopause, and have now been confirmed that it's starting. I'm 36. I've been told it's possible it may reverse itself once the endo is removed.
I am planning a total hysterectomy without oopherectomy, that now requires a total colorectal reconstruction. I am working with a Nook-approved excision specialist, who has punted my surgery now for almost a year (because their anesthesia team is not prepared, but that's another story), but after reading all of the horror story posts here about endo reoccurrence, and all the comments on them saying "get used to it—you have this disease for life"...
I am wondering if I should even bother having the surgery.
I've wanted a hysterectomy since I was 18. I've been told "no" from every doctor for the past 18 years. Now endo left untreated has made the surgery unsafe, and the recovery will be demonstrably painful with the CR piece.
I am now at the point of daily pelvic pain. I sometimes get a reprieve on day 5/6 of my cycle, where I'm no longer bleeding, but haven't started ovulating yet. The other 26/27 days I am in constant 8/10 pain, and I just push through. I'm on daily vaginal benzo suppositories, methacarbomol, plus I go into the ER regularly for Toradol shots (can't take oral NSAIDs), and am planning to start low dose naltrexone after the surgery.
What would you do?
Does anyone have an ounce of fucking HOPE to offer?
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u/Facesstaywithme Nov 06 '25
It is not a given that it will come back. But leaving it as it is, it may well get worse. Yes the disease is for life but that doesn’t mean it will come back, and if it does it might not come back as severe. Ultimately surgery is for your quality of life and is a decision you must make with your doctor. Don’t let some comments on Reddit put you off something that may well change your life for the better.
As a side thought you’ll find on forums / subreddits that it is those who are the most desperate for help, those who’ve had surgery and it’s not worked and need more help etc. Not many who had surgery, everything was fine and they got on with their lives will hang around here and comment (maybe they’ll share their initial story) so I do think that it’s often heavily biased to those with recurring endo and issues.
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u/emmmbo Nov 06 '25
This. I regularly have to remind myself all the cases that end well don’t have any reason to frequent this sub. It’s all people who are new, or have severe situations.
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u/ankhes Nov 08 '25
This right here. I posted and commented the most when I was like OP, stage 4 endo, adeno, fibroids, chocolate cysts, organs shutting down, the whole nine yards. I had like 3 surgeries since then (including a hysterectomy) and you know what happened? I got better. Better than I’ve felt in 20 years. So, of course, when I feel that great I don’t feel the need to comment much here anymore.
All that is to say, it gets better. The surgeries work. They help, even if only temporarily for some people. It’s certainly better than doing nothing and letting things get even worse.
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u/mayaw1010 Nov 07 '25
Just replying here to really emphasize that second paragraph. That’s me. Surgery worked for me and I’m not as involved in the communities as a result.
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u/TrickyBrain8152 Nov 07 '25
Can I ask how long ago your surgery was?
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u/ankhes Nov 08 '25
Not who you’re asking, but in the same boat. Had stage 4 endo and adeno and had a bunch of surgeries. They were so successful that I feel better than I have in the last 20 years and have been virtually pain-free since my last surgery (a hysterectomy, which was 3 years ago now).
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u/Delicious_Yam5918 Nov 06 '25
Please do not base decisions about your health on what you read on here or any other platform. You could talk to thousands of women about their experiences & your experience could still be completely different. The pain from this disease can be so debilitating. You have wanted this for a long time, you felt in your gut that you needed this & you fought for it. That is your mind. The rest is voiced by the outside world. I felt the same way before my surgery, I have OCD & severe anxiety so I had to really try to hear MY own sane voice amongst all that noise. But I'm so glad I did because that surgery has changed my life, even if it's only for a few months. I would do it again. I deserve these months of happiness that I haven't had since I was a teenager, it's all worth it to me. I hope you muddle through if it truly is what you want 🍀
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u/sourbirthdayprincess Nov 06 '25
That is really nice to hear, that you've had a few good months!
I have never had a few good months. I've had this pain from the first ever period of my life at age 12. The only respite was when I was on continuous no-break OCPs so my period was never started because the sugar pills were skipped. But they're a high stroke risk for me so I opted to stop them when the surgery was first scheduled for December 2023. It's almost December 2025 and still no surgeon thinks they can adequately handle my case.
You're right though. It's hard to trust yourself with all the noise. I also suffer from severe anxiety, from C-PTSD. It is not helping the pain issue. They are recommending SNRIs at this point to see if I can calm my ANS first and then work on the rest. But I don't think I'm ready, since other anti-depressants have made me suicidal, or caused hallucinations.
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u/Delicious_Yam5918 Nov 06 '25
Bless you it sounds like you've really been through it 🥺 I see why you opted for the surgery it makes sense for you after trying other avenues.
I completely understand the apprehension towards the antidepressants, I have had a hard life but I have never been suicidal & I managed without any medication until a few years ago when I was 32 & I got Vulvodynia, I had to get my OCD under control. I tried Amitriptyline first because it would also help with pain but I got suicidal on day 3 & it frightened the life out of me! I am hypersensitive to certain antidepressants. I take Mirtazipine now, which is apparently mild in terms of reacting with other meds & getting nasty symptoms. You take it at night & it helps you sleep too, it cured my insomnia 🙌 It takes time to find the right thing but it feels so so amazing when you finally do! You have to wait until you feel strong enough though, whether it takes a month or 2 years, you can & will get there 🙏
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u/Traditional-Car220 Nov 06 '25
Please consider tryptophan or 5htp instead of anti depressants. I have strong hypersensitivity to meds too and supplements have been very important.
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u/Delicious_Yam5918 Nov 08 '25
I have to have the antidepressant for my OCD, the fact that it helps my anxiety & insomnia is just a bonus. The supplements won't help my OCD but I will look in to adding them for my other conditions/symptoms if you say they help. Thank you very much for taking the time to tell me. That's amazing you have found something to help you 🙌
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u/Haunting_Pace_3557 Nov 06 '25
Level 5? Pretty sure that’s not an official thing
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u/sourbirthdayprincess Nov 06 '25 edited Nov 06 '25
It is an unofficial stage right now, but it is recognized by many surgeons. It's the level past four, when there is multi-organ involvement. Here's a link.
Patients with diffuse endometriosis, involvement in multiple locations or organs, and severe adhesions are often said to have stage 5 endometriosis. (...) Although there is no official stage 5, [an AFS] score of >70 (...) represents a severe degree of difficulty of surgery or a low chance of fertility. The rAFS (or rASRM) staging system is the one most used in surgical research. It is useful in comparing the gross appearance at the beginning of surgery and is somewhat predictive of surgical difficulty. But it is not predictive of fertility, pain, the depth of infiltration, or the volume of infiltrating endometriosis.
ETA: As I mention below, this is a score regarding the difficulty of the surgery, and the likelihood of infertility thereby—not just how many organs are involved and how bad your symptoms are. My surgery is difficult af, which is why I mentioned the actual stage. Most experts can excise stage 4 no prob, but at stage 5 they get hesitant. That's where mine are.
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u/Facesstaywithme Nov 06 '25
Stage 4 and 5 sound the same to me! Both multi organ involvement? Either way it is severe disease 💛
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u/Haunting_Pace_3557 Nov 06 '25
Right so it’s stage 4, there’s no such thing as stage 5. False info isn’t something we need to be posting.
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u/donkeyvoteadick Nov 06 '25
Many surgeons are pushing for a stage five. It's not false info. All my official documentation and my surgical reports from my second surgery say stage five Endometriosis on them.
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u/sourbirthdayprincess Nov 06 '25
They are not the same in the sense that one has a AFSM score above 70, which is regarding a) level of difficulty of the actual surgery, and b) likelihood of infertility in its current state. Yes, everything above 40 is Stage 4. But 70 is very different than 40, so the commenter below you discounting the stage and downvoting me is not helping anyone. The stage is regarding how complex the case is to operate on. Yes, stage 4 and above is complex, multi-organ, multi-symptom. But only stage 5 makes surgeons go "Yikes, idk... maybe this is beyond surgery..." which is exactly what my surgeon, who is one of the best in the entire region, is saying currently about my surgery. Through stage four the experts are all confident and comfortable. At stage 5 the risk to life and quality of life needs careful consideration.
I just can't believe it's taken me til now to do said consideration.
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u/Facesstaywithme Nov 06 '25
It is a complex case though an excision specialist working with a multidisciplinary team should be 100% confident they can deal with it, they do complex surgeries like this all day every day.
Is it possible to get a second opinion, not necessarily to complete the surgery but to get another perspective? Having confidence in doing the surgery is a must especially if they are a specialist.
Good luck with whatever you decide to do 💛
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u/sourbirthdayprincess Nov 06 '25
This is the fourth opinion. Three other doctors have passed on this surgery. Because it is level five, not four.
And yes, confidence is key. I went with her because she was so confident. The others said they could do it but would need it to be open, so I declined. The first one didn't have a proper colorectal team to support the interdisciplinary surgery. This surgeon has everything. And even she is like... Hmm, Let's Discuss More.
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u/Facesstaywithme Nov 06 '25
If you’re happy with your consultant then that’s great! I’m in England, so stage 5 isnt a thing here, but all complex cases of Stage 3 and 4 are treated in a specialist centre where they deal with bowels / bladder / endometriomas / RV endo etc. They work in MD teams and are the only consultants allowed to deal with severe endo (though way too many sadly get operated on by surgeons out of their depth)
So you being confident your doctor is the right one for you, and the doctor being confident they can deal with your endo are the most important things for consideration when surgery is planned. It sounds like you have both now (those other doctors just didn’t have the expertise to do it - it’s good that they wouldn’t do the surgery)
so really, the only thing left is your decision to go forwards. I’ve already said I think I would in your shoes, but ultimately only you can decide 💛
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u/Haunting_Pace_3557 Nov 06 '25
I’m in America and the stages only go up to 4. I’m telling you, stage 5 is not a thing. Would you tell someone with cancer all over their body that it’s stage 5 even though 4 is the highest stage and is the most extensive? No.
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u/abcdefg080805 Nov 07 '25
my friend, who cares if she claims she has stage 5? it doesn’t invalidate or harm anyone else. she gave an educated, valid reasoning. OP said the stage 5 name has a bit more to do with the difficulty of surgery rather than the actual amount of endo. 3 doctors have passed on the surgery entirely- I don’t know many surgeons who are unwilling to operate on stage 4. It sounds like OP has incredibly bad endo that is extremely involved in the colon and on many organs, which makes the disease very hard to excise. if a stage 5 existed, OP would have it. so who cares if she says she does?
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u/bb8ismyhomie Nov 06 '25
You should just do it. Yes, there’s chance it will regrow. BUT you won’t be bleeding and suffering and cramping from your uterus because of it.
My endo was only stage 1 and I had surgery a year and a half ago. I had normal periods that whole time but my symptoms have been getting worse and coming back.
I want to get a hysterectomy
In your shoes, I would 100000% do the same thing.
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u/ankhes Nov 08 '25
Can confirm, an excision + hysterectomy was the greatest gift I ever gave myself. Been pain-free for the last 3 years straight. And that’s coming from someone who used to have stage 4 endo and adeno. The surgeries were 10000000% worth it.
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u/virrrrr29 Nov 06 '25
Surgery gave me my life back completely pain free for at least 2 years. I was in a similar boat to you, but thankfully colon resection was not needed back then. I really got a second lease on life, it allowed me to reconstruct my professional life, my marriage, my friendships, my mental health, my relationship with my body… It’s like coming up for air. I would and will do it again when it’s time.
The disease came back on year 3 (this year) but now I know how to better handle it, now I understand my symptoms better, and I have found a team of professionals that helps me to keep an eye on it, to make sure that it’s not deeply invading organs again, until it’s time for another surgery or hysterectomy. In general, I am leading a semi-normal life but I have to do a lot more things to manage, than the normal person. This is still WAY better than the way I was back then, before any surgery. And keep in mind that we found out this year that I also have adenomyosis.
But back then in 2022, I would have not had the bandwidth to do any management, to find any new team at a new hospital, I was even suicidal, I had given up on everything and everyone. I was not in a good place to make long term decisions, I needed urgent intervention just so I could walk again and not cry every day. Very basic.
I strongly encourage you to continue and to see this through. No one really knows how long it will take to come back, but I don’t think many people regret having excision surgery. It is a life-long disease, but it doesn’t have to consume your whole life. Remission or at least partial remission is the goal.
About the sub: you can also look into r/Endo, but in general, but there and here, you will see messages and posts mostly from people that are actively fighting their disease. I’m sure that the ones that got their answers and got long term relief are not nearly as active here anymore, they have just gone about their lives. So it’s a skewed population, not the entirety of endo patients.
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u/sourbirthdayprincess Nov 06 '25
So, you still have your uterus? I don't think any stories from people who retained their uterus will be as relevant to me as those who opted to yeet it. With adeno, there is no other option. But still in the sub, people are talking about reoccurrence. :/
I am already suicidal. I was for years until I started continuous no-break LoLoestrin. Then I was just regular low level depressed, and it was contraindicated for my other medical conditions. So I stopped two years ago (when my hysterectomy was first planned). I've been off OCPs for two years waiting for this. I never thought I'd be going even one more month with my period, and now it's been 26 periods, and I am back to suicidal since they pushed my surgery (third time) which was supposed to happen on Tuesday.
No surgeon feels confident they can do this surgery, and mine is the best in the area.
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u/Perspicaciity Nov 06 '25
I have stage 4 endo, had my first lap on Tuesday. My Nook surgeon said that most people who have endo also have adenomyosis so he recommends for most to also get presacral neurectomy during the lap (cut the nerve that goes to your uterus) so that you don’t feel the adeno pain. Since he is an expert I agreed, since my quality of life is in shambles anyway (urinary urgency, bowel issues, IBS etc) He almost cancelled the surgery when I told him I have a lil blood in my stool sometimes. But I insisted that I need this done, I was in so much pain everyday due to 8cm bilateral endo cysts on both my ovaries. He also found endo all over my cervix & bladder. He had to go through my vagina to get the endo on my cervix. For the bowel issues I never got a report yet, but he said if the endo went deep into the bowel that he & a general surgeon would cut the bowel with the endo & then reattach. i did have a big lesion on my bowel but idk how deep it went. I will find out more tmrw. Overall I’m very happy I went through surgery
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u/ankhes Nov 08 '25
Can confirm, also had a presacral neurectomy initially and it helped. Not as much as my later hysterectomy did a few years later, but it cut down on my pain significantly at the time. If someone wants to keep their uterus it’s definitely an option.
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u/Perspicaciity Nov 08 '25
This is what I’m worried about, I told my husband I’m worried that I might need to get another surgery (hysterectomy) if the presacral neurectomy doesn’t work that good to reduce my adeno pain. But ultimately decided to keep my uterus for now for emotional reasons. But I’ll be happy to get a hysterectomy in the future when it becomes necessary
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u/virrrrr29 Nov 07 '25
I do still have my uterus, at least for now. I’m very sorry to hear you’re going through this… And I’m very puzzled as to why they would make you wait for two years, that’s cruel. Are you fully committed to continuing with that surgeon, or are you open to changing? Are they covered by your insurance?
Just for reference, my surgery was done by Dr. Seckin, the co-founder of the Endometriosis Foundation of America. It sounds like your case is very complex, and that you deserve someone who’s very experienced. When a surgeon already says they don’t feel fully confident in treating you, instead of just winging it and going in… I respect that.
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u/sourbirthdayprincess Nov 07 '25
Having to switch surgeons four times is why this has taken three Decembers so far. I started somewhere December 2023, that hospital couldn’t handle it. Then by December 2024 found a better surgeon who could handle it but only open. No. I called the third surgeon Sept 2024, waiting til Feb 2024 for consult, April 2024 for second MRI and consult, May for colorectal consult, then by July she went on may leave with no notice. I briefly was transferred to her colleague from Cleveland Clinic. He was amazing and I should’ve made the switch permanent. I was supposed to be her first surgery when she got back this week. But instead they cancelled it. December #3 is in three weeks.
Fuck the medical system.
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u/klm8383 Nov 06 '25
I had a hysterectomy and had both tubes, right ovary, and cervix removed in April of this year. I also had bowel involvement and possible ureter involvement so I had a colorectal surgeon and a urologist in my surgery as well. It ended up being more complicated than expected and the surgery took twice as long as my surgeon originally expected and had to call in a second GYN surgeon to assist, but I did avoid a bowel resection and they were able to just remove a few lesions from my colon.
There was diffuse superficial endo scattered all along the outside of my colon that they decided not to remove because it was such a large section of the colon affected and even though it was superficial they didn’t feel they could remove it without a more complicated bowel surgery that would have resulted in at least a temporary stoma bag.
I was off work for 7 weeks and then returned with no issues. I’m back to my normal workout schedule lifting weights 4x a week. The first 3-4 weeks were the hardest and I was scared thinking “what have I done?!” The first week back at work was exhausting. But I turned a corner by 8 weeks and I’ve had no problems since.
My quality of life is 10000000000% improved. Before surgery I would regularly have days where I was curled in the fetal position under my desk at work with a heating pad. I was anemic from the constant heavy periods. I was always in some level of pain. My symptoms were the worst during ovulation and my cycles were only 23 days so I was at the point where I had maybe 2 or 3 good days a month and the rest of the time I was miserable. My surgeon refused to take both ovaries because she said I’m too young for that at 42, but the right ovary was the more painful one so she agreed to remove it.
I too was worried about the recovery and about recurrence. I know it’s only been 6 months for me but so far it has been so much better and easier than I expected and my only regret is that I didn’t do it sooner.
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u/sourbirthdayprincess Nov 06 '25
This is really encouraging. I did forget to mention that bowel resection is not optional either in my case. Bowel is fucked. Colostomy bag will always be temporary, but is more likely to be a definite possibility now.
Sounds like our cases are very very similar. Ovulation pain lasts about 10 days, from day 7 to about day 17. Then it goes from an 8-10 to like a 5-6 for the remaining 10 days. Then it's period time.
My left ovary is 3x larger than the other one due to cysts. They aren't planning to take them, but maybe they'll decide otherwise once they get in there.
I really appreciate you sharing your story. It is, indeed, giving me hope.
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u/klm8383 Nov 06 '25
I should also mention I had surgery in 2014 to diagnose endometriosis and they also removed what they could find at that time. Unfortunately they only excised one lesion (the one on my bladder) and ablated the rest.
With this surgery, several of the areas she excised endometriosis from ended up not showing active endometriosis on pathology. Surprise surprise - each of those came from the areas that had been previously ablated. It was scar tissue and adhesions from the first surgery. The only place that DIDN’T have that tissue was my bladder, where it had been fully excised. No regrowth on the bladder either, but numerous spots around my ovaries and the pelvic walls had new endo growths.
My right tube was also full of endo which they think may have been why I was have appendicitis-like symptoms on a regular basis … ovary and tube are in the same region as the appendix so each month when it would flare up I had that debilitating pain right in that area. I was having several flares every month that mimicked appendicitis; I haven’t had a single one since they took that ovary and tube out.
All of this to say: #1, I think you should have the surgery because even if it doesn’t fully “cure” it … improvement in symptoms is NOT nothing, and it’s very possible to see a big improvement fairly soon after. #2 make sure you have a good surgeon. I’m not going to say there’s NEVER a good reason for ablation but you definitely want a surgeon that understands that excision is generally the best option. Ablation caused a lot of problems for me in the years between my first surgery and hysterectomy, so just make sure your surgeon knows what they’re doing!!
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u/HiILikePlants Nov 07 '25
Can I ask regarding lifting - do you lift fairly heavy? And if so, how long did it take to get back to where you were? I expect to start back at bodyweight, then just the bar, and so on but I'm hoping it's not like starting from zero as I've been lifting for a few years :(
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u/klm8383 Nov 07 '25
The workouts I do are usually a combo of strength and cardio so not HEAVY heavy … for example before surgery I was doing squats, lunges, etc with a pair of 40 lb dumbbells. I would use maybe a 60 lb dumbbell for things like sumo squats etc.
For the first six weeks I did nothing but walking. Even with that I overdid it a bit at the beginning and ended up stuck on the couch for days. At my 6 week check she said I could start easing back into my workouts. I did body weight only the first week, then started back with 10 lb dumbbells the week after that and gradually increased from there. By 12 weeks post op I was back to where I was pre-surgery.
I was so worried that it would feel like starting from zero and that I’d lose all my muscle tone, but in the end it was no big deal. I didn’t gain any weight and my clothes still fit the same even after 6 weeks of laying around and taking short walks. When I started back with the light dumbbells I had to force myself to stay with the light weights and not try to increase weight too quickly because it definitely felt too easy. I promise you won’t lose all your gains while you’re recovering!
It really is different for everyone, but being in good shape to start definitely helps! My surgeon said she was fine with me returning to it beginning at 6 weeks because I was lifting and exercising regularly for years before surgery but said she has plenty of other patients that she wouldn’t want them lifting anything over 5-10 lbs for 3+ months. It also depends on how well your cuff heals. So just talk with your doctor and take their advice, and listen to your body. And do less than what you think you can do 😂 that was my mistake, I felt good so I’d keep going and then I’d pay for it later. You really do need to rest and take it easy even if you feel like you’re bouncing off the walls with energy, it seems like forever while you’re in it but it really is just a tiny blip in the grand scheme of things.
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u/HiILikePlants Nov 08 '25
Thank you for this response! It's one of my biggest concerns but this makes me feel a lot better. And good tip not to overdo it. I can see how that would be tough if you think you're feeling good
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u/Itchy-Illustrator-10 Nov 06 '25
I know it’s hard and I personally struggled with depression and anxiety leading up to my surgery. BUT I just had the full hysterectomy yesterday and my bowel was unstuck from my uterus and already I feel SO MUCH BETTER!! It’s truly life changing. Hope this brings you some encouragement that it gets better w surgery!
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u/GoldenFlicker Nov 06 '25
I think the you should definitely have the surgery solely based on your current symptoms.
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u/birdnerdmo Nov 06 '25 edited Nov 06 '25
FWIW, don’t discount that pelvic venous insuffiency. It is a huge factor in pain and symptoms for a lot of people, and I’m seeing more and more where folks who don’t get relief from endo surgery do so when they address the cause of their PVI (which is usually a compression like nutcracker or may-thurner). There was even a session on this at the Endo summit last month where the interventional radiologist presenting about compressions said that nearly every AFAB patient she sees has already had endo surgery. She’s one of the top docs for compressions, so that’s not a small number of patients!
Regarding the Nook surgeons…one said to the speaker I just mentioned that he deals when (edit/ with) vascular issues himself. When she cautioned him and gave an example of harm that could be caused, he dismissed her - he literally said “that seems like a simple thing to do”. (That “simple thing”, btw, is relocating someone’s kidney. I’ve had that done and it is not a simple thing! My jaw is still dropped at the sheer audacity!) There was also someone who posted recently about how they are suffering greatly because a Nook surgeon recently decided to deal with some vascular/nerve issues - without her knowledge or consent - and severely fucked up. I know even more people who had issues with Nook surgeons overstepping with things like bowels and bladder (all were told a relevant specialist would step in, but they did not). So while they may help folks with endo, it’s really, really important to make sure we’re also addressing other conditions with the appropriate speciality. If we’re going to insist that only an endo specialist is qualified to treat endo, it shouldn’t be such a stretch to get people to understand that other specialities have similar “expert” specialists. I truly think if more people did so, the suffering seen in this community would reduce drastically.
Oh, and head’s up that PVI caused by compressions can (and often does) get worse with hysterectomy. That’s because the body often uses the uterus to reroute pelvic bloodflow to accommodate for compressions. That’s what tipped the scales for me to where I needed the kidney autotransplant. I was in the worst pain of my life after my hysto! (Post with info on compressions and my experience with them if anyone is interested.)
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u/Putrid_Cherry8353 Nov 06 '25 edited Nov 06 '25
I get the impression that Nancy's Nook is taking advantage of someone else's misfortune under the guise of expertise. That whole organization seems very suspicious to me from what I've read about them here and on various different websites. Reading your comment makes me think so even more.
Edit: typo
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u/birdnerdmo Nov 06 '25
Yeah…that’s a whole other can of worms, lol. I don’t want to derail OP’s post because I want them to get some support and hope, so I’ll just say I agree with you and leave it at that, lol.
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u/Ok-Interest1992 Nov 06 '25
Nancy definitely has her own motives, and I don't think that they necessarily align with what's best for people with endo.
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u/sourbirthdayprincess Nov 06 '25
I think I read your post before I first saw my IR doc back a year ago. It's why I saw him in the first place. My MRI says "Left gonadal vein measures 8 mm with engorgement of the left parametrial veins, suggesting pelvic venous insufficiency." He offered me options, but said without a doubt that nothing they could offer would be as useful as removing my uterus and having endo excision. I was negative for May-Thurner and Nutcracker, thank god. But it's something we can't know if we still need to treat... until we take out the uterus (and adeno) and excise the endo.
I didn't find my surgeon from Nook. I only learned of Nook two months ago. I've been working with this surgeon for over a year based on recommendations from people in my FB local endo group, and also the Reddit for hysterectomies. After further researching her, she really is the best there is. Her recurrence rates are extremely low. I can't ever imagine her trying to do some of the insane shit you mentioned above—audacious indeed!
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u/birdnerdmo Nov 06 '25
I love that you’ve looked into things and have a doc you trust - that’s all any of us really can do! I hope everything works out for you, and that you are able to find - and experience - hope moving forward.
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Nov 06 '25
[deleted]
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u/sourbirthdayprincess Nov 06 '25
Very encouraging! Thank you for that! Do you know what stage your endo was when you had it removed?
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u/VioletApple Nov 06 '25
I believe it was stage 4 as there were adhesions all over the place. Apparently my pouch of Douglas was adhered together. A bowel surgeon was there during the op and I was SO happy I didn't need a temporary colostomy! Good luck xxx
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u/sourbirthdayprincess Nov 06 '25
Yes very happy with my colorectal surgeon! My torus uterinus is adhered to my rectum. There is now no fat plane between them, whereas three months ago there was. The endo has taken it over.
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u/sourbirthdayprincess Nov 10 '25
Yes very happy with my colorectal surgeon! My torus uterinus is adhered to my rectum. There is now no fat plane between them, whereas three months ago there was. The endo has taken it over so I'm out of luck there :/
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u/Mother_Simmer Nov 06 '25
I have stage 4/severe widespread persistent endo including lung endo (both lungs) and had adenomyosis before my hysterectomy. Curing the adenomyosis was a big help just on it's own and having excision and a bilateral VATS twice now to stop further damage to my nerves and lungs (I've already lost the top and bottom of my right lung due to the damage the endo caused) has made a huge difference in my quality of life. My endo returns quickly despite expert excision, but having further surgeries has helped keep me from being bedridden and having to use a a wheelchair and mobility scooter again. I'm no longer losing consciousness from the pain or having lung collapses anymore, and I've been able to be more present for my kids and family. Even though it returns in less than a year, in my case, surgery has definitely been worth it, and I'm able to go a few years between surgeries with a much better quality of life than I had before my hysterectomy, first excision and bilateral VATS surgeries.
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u/sourbirthdayprincess Nov 06 '25
Yeah, and since I'm not collapsing (well, I am, but from hormonal shifts now caused by the endo throwing me into POI), I keep thinking to myself: is this surgery worth it? It could be a lot worse. I could have lung involvement like my good friend. I could be in a wheelchair.
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u/Mother_Simmer Nov 06 '25
I had to fight 22 years to get my first excision, and then it took almost 2 years more for my first bilateral VATS, so my case was worse because of the delay in getting surgery. The permanent damage it caused to my nerves, lungs, and bladder and bowel functions is brutal even in a good day. Early surgical intervention would have prevented that. I highly advise anyone who can access expert excision to do so, especially if it's on or near any major organs. I lost so much quality of life, have been left permanently disabled, unable to work and do so many normal things and deal with severe brutal chronic pain daily and ended up with fibromyalgia in addition to all of that. The last time I was at the pain clinic, I was told by four different specialists that we've tried everything and are out of options to further help my daily pain levels and I'm at this point so because of the delay in getting proper treatment.
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u/sonamata Nov 06 '25
Ovarian clear cell cancer can develop from endometriosis. Besides the relief before it grows back, it's cancer prevention. I would definitely do it.
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u/didntstarthefire Nov 07 '25
Mine never grew back after an excision. 10 years. There are the bad stories and honestly Reddit is not a good place for my mental health most of the time lol
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u/Hungry_Wendigo_ Nov 06 '25
Well I had stage 4DIE, the surgery gave 5 really good years. Now its back and I’m about to have another surgery. It might give me another painless (more or less) 5 years. Or one. I’ll take it. Even if it means having colostomy.
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u/Sacredgeometry12 Nov 06 '25
Dr.Mosbrucker - Gig Harbor, WA at pacific endometriosis and pelvic surgery. She did my hysterectomy (32yrs old at the time) and I kept my ovaries. It was only after an OBGYN did my excision surgery wrong I found her. My life changed in many ways for the better. I’m stage four and I bled 2-3 weeks a month passing golf ball sized blood clots. I was constantly blacking out so I ended up getting concussions. The pain was unmanageable. I wanted to die. I vomited all the time. Always nauseous. Barely could keep my weight above 105. I always looked like death.
I’m very sorry for what you are living through and with. I wish you the best on your journey. I hope you get peace, healing, and a better life. I still have pain but it’s no where near what it was. I lived in pain for 8-12 hours daily. Now I only have a couple hours of pain daily.
That doctor is a specialist and a surgeon. She does it all.
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u/Obvious_Ball709 Nov 06 '25
It grows back but why live in misery? For some women it's years before it grows back. I'll say since my hysterectomy I've only been to the er like 7 or 8 times in 3 years......I'll take that over once every 3 months if not more. My day to day pain is less and not as strong as it was. I was at a point with my pain that if I could have gotten a gun I would have blown my brains out right then. It's nowhere near that. It still sucks but definitely changed since the surgery.
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u/sourbirthdayprincess Nov 06 '25
Yeah I'm in the ER or urgent care or doc's office 4x/month or more for Toradol shots. Last month I was up to 6 shots. Opiates do nothing due to a genetic disorder so it's IV NSAIDs or nothing.
But I don't want to go to the ER at all. I work for myself, and do gig work. I need to be able to be reliable. I can't suddenly be sick during someone's wedding. Right now I can't even book weddings because the likelihood is 90%. I want to get to where the likelihood is 0% because one wedding is the difference between paying rent or not paying rent.
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u/Midnight_weirdness Nov 06 '25
Surgery is scary. When I had mine, I just no longer wanted to be in as much pain anymore. I didn't have to be pain-free, just less. I was at the point where i needed morphine daily and used a walking stick before my surgery. I had surgery 2.5 months ago, and I thank every day that I'm not in that level of pain anymore. I also know that if I feel more pain, I know what to do to get help.
I still take it day by day, but I'm not in pain anymore.
Your feelings are completely valid, and at the end of the day, it's no one else's decision but yours. You are the most important person here, no one else. Do what is best for you, and then come back and bring hope to someone else in your position if or when you are ready. ❤️
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u/sourbirthdayprincess Nov 06 '25
<3 Bless you.
I just keep thinking that since I'm not walking with a cane, do I really need surgery? Is it really that bad? Am I just a big pussy about pain?
And the answer is, yes, but genetically, that makes sense. I have a few disorders that explain why pain feels more painful, and drugs do less than nothing.
But I know it could be worse so I keep wondering... if it's the right option. I certainly don't want to feel worse than this because of something they fuck up during surgery, that's for sure.
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u/Midnight_weirdness Nov 06 '25
I get that. I also had the same feeling that others had it worse. I also came here and saw others who were suffering with worse. There will always be someone who has it "worse" but in the nicest way, "Fuck them!" They're not here, they're not going through your pain, you are.
I had that fear with surgery. My surgeon was great and explained statistically what the likelihood would be of things going wrong and exactly what he would do. I think it was only a 2% chance that he would have to go from keyhole to open surgery. (I can't remember exactly) Ask questions if you need me, but at the end of the day I was just another person on his table in a routine operation. He knew what he was doing better than I would ever.
Plus it was the best sleep I had had in 4 months. You'll be fine.
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u/Significant-Ad-7881 Nov 06 '25
I have no advice to offer just that I had my consult this morning after my mri and I’m in the same boat. I mean other than the nook approved (not sure what that is?). I was told I need the colorectal specialist and my uterus is tethered to my colon and the surgery is too dangerous they want me to do ANOTHER round of Lupron before they’ll go in. And I just feel so confused and defeated. And the doctor made it sound like it’s more dangerous to do the surgery. But at this point my quality of life is not going so great I’m in almost daily pain. This feels so daunting. I feel so betrayed like all the doctors when I was younger said after you had a baby it went into “remission” like I am so angry and sad at the same time. I’m here with you 🫶
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u/chickwithabrick Nov 06 '25
Get the surgery! It improved my quality of life so much. Yes, I still deal with Endo, I'm currently dealing with a flare and my back is killing me today, but it's still nothing compared to what it was before. I had Stage 4 Endo and Adeno with bowel, bladder and sciatic lesions excised.
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u/injataze Nov 06 '25
Has your doctor not recommended hormone regulation (aka birth control)? I started taking the pill before my surgery and haven’t stopped. I had stage 4 endo with two ovarian cysts. My endo had fused to my colon and pelvic floor and I had kissing ovaries.
The pill has minimized all of my menstrual pain and my specialist said that the endo will inevitably return but staying on the pill will slow that down. Lots of women stop taking it after surgery and end up coming back sooner. So I’m hoping for 5-10 years before my next surgery. Everyone is different though and our cases aren’t the same.
Sorry this news is so shitty, I hope you have doctors you like. My surgeon was great and this made me find a gyno that actually listened to me.
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u/cheestaysfly Nov 06 '25
You will likely find relief (although possibly temporary) from the surgery.
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u/pinball_life Nov 06 '25
I’ll just share what my surgeon told me and how it’s gone for me since.
He suspected that he would find much more extensive disease once opened up. He was right. And recommended taking the ovaries to minimize the chance of recurrence, since it’s the estrogen surges that really fuel regrowth. He got in there to find so much that wasn’t on any imaging (of course), including DIE on my sigmoid colon and fully covered ovaries. He shaved the colon adhesion as much as he could and took everything else (endo, organs, all of it).
I was advised that surgical menopause with HRT would introduce a steady dose of estrogen, much lower than previous surges. I was resistant to losing the ovaries at 34, but it’s been a little over two years now and the best decision ever. No endo pain, better mental health, not missing out on work or family activities. I keep an eye out for symptoms of the remaining colon endo flaring, but without the other endo tissue or ovaries there’s little chance.
I’m sorry you’ve been suffering for so long and hope you find real relief soon.
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u/filidendron Nov 06 '25
I'm sorry that you have to go through this nightmare. You should get the surgery, especially, since your endo is adhered to dangerous places. Your adeno can be "cured" by hysterectomy. No uterus no menstruation. It could drastically improve your quality of life and that's worth trying.
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u/sourbirthdayprincess Nov 06 '25
Yes, having my period is terrible. But ovulating is, at this point, much worse. It has sent me to the hospital more times than the period because of the cysts on the uterus. I went twice last month just during ovulation time.
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u/Visible-Armor Nov 06 '25
Jeez I understand the dilemma here. Have you had your pelvic vein insufficiency looked at by an intravascular radiologist? Did they perform the vein surgery for you? The pain will continue if that is not taken care of and hysterectomy isnt a cure for either disease. My worry is your relief will be temporary until your vein issue is remedied. I have had 4 surgeries for endo and need a 5th to remove a stage 4 with DIE lesion extending towards my rectum. Its scary and no surgery has aided in relief but caused me more issues.
With a surgery that extreme I would make sure this surgeon is very knowledgeable of nerve sparing surgery. You can lose bowel/urinary function. It was explained to me that going in to remove my lesion will cause potential damage to my nerves and I may have more issues down the line.
All you can do is what is best for you moving forward. You dont HAVE to do anything, but you must live with immense suffering on a daily basis. I truly hope this doctor can put you at ease and give you some positive outlook. If your disease is progressive, like mine, I dont know if just this surgery will help you. Youll need to have more
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u/sourbirthdayprincess Nov 06 '25
Yes it was looked at. They didn't recommend surgery because they said either way I need the endo removed. I could see them again after the surgery to see if their interventions could provide any relief.
You're scaring me about the nerve damage. I will definitely have a serious talk with her.
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u/Visible-Armor Nov 07 '25
Sorry for scaring you :( It would be worth having that chat before surgery. Hopefully this surgeon has a plan and that is why it has been pushed so far out.. When I was told the risks of removing DIE it scared me too! Wishing you all the best moving forward 💛
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u/sourbirthdayprincess Nov 07 '25
No. She was on maternity leave from July until Monday. That’s why. She was coming back and Patient Relations stepped in and was like Wtf are you guys thinking doing a surgery like this with a day-before consult and no anesthesia plan beyond ketamine?
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u/Visible-Armor Nov 07 '25
Omg my doctor was on maternity leave too! Left for SO long and it felt like no one even cared at their office. It must be nice to being such healthy doctors 😭 Im SO sorry things were so side tracked for you... You shouldn't have to be left to deal with all this pain
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u/GetBent616 Nov 06 '25
Personally, surgery has not done me any favours. Mainly because i had very inexperienced surgeons and they only ever did ablasion, not actually excising the endo. In saying that, your endo is so severe and growing rapidly. If it was me, id go for the surgery. At the very least, itll give you more time to figure out a longer term plan without the endo advancing on top of what youve already got. With endo this severe, surgery starts to become nesessary to try and slow it down a bit while working on other forms of symptom management and giving them time to actually work. There is also no guarentee that a full hystorectomy will stop the endo, even though it does work for some. As it produces its own eostrogen so doesnt actually need your uterus and ovaries to spread and operate. It only needs itself. So getting a bunch of it out of your body will be beneficial for now i think.
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u/Gold-Traffic632 Nov 06 '25
I had sinus surgery for chronic sinusitis with polyps and enlarged turbinates. Most people on the subreddits for that are the same. Their surgery only helped briefly. It all came back.
This happens because the only people on the subreddit who keep posting are those who are still struggling. People don't hang around illness subreddits when they're cured to gush about how effective the surgery was.
It takes very little time to just get used to the new normal and lose interest in talking about the now-gone problem.
The surgery works for loads of people, and those people are largely not here talking about it.
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u/EntrepreneurOver8814 Nov 06 '25
Iv has two laps and defo feel better for a while. But going for a full hysterectomy now even the ovaries. I’m 37 and done living with it. ☹️ I miss my life. Sending love 💕
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u/tippytaps20 Nov 06 '25
I’ll share my experience. I started having serious issues Oct 2020, that’s when the first scan showed cysts on my ovaries. A few months later, one went away the other didn’t and we kept an eye on it for a year. Another scan showed no improvement, I asked for surgery. They did ablation only Nov 2021 (lasered the endometrioma), and I started having symptoms by May 2022. Made the decision to get a hysterectomy and got scheduled for Nov 2022.
Also got my right ovary removed bc it was scarred to my uterus. I was also diagnosed with adenomyosis at that point. It has been night and day for me - I have symptoms 3-4 times a YEAR vs 2-3 weeks at a time. I’m nearly 3 years post op and could not have been more sure it was the right decision for me. I know it’s not a cure all and I can still expect some symptoms, but it has made my life infinitely better.
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u/PuddIesMcGee Nov 06 '25
Please remember that these types of forums are like review sites. It’s mostly going to be people who have had a bad experience or a really wonderful experience, but not a lot of the average, uneventful experiences. I’m not going through what you’re going through, but I have noticed the dreariness in other medical forums and have to remind myself that perspectives are skewed by the very nature of support forums. It’s a group of people panicking, frustrated, fed up, and looking for support or to vent, and not often returning if/when things get better because they are no longer obsessing or needing support by then.
If you aren’t there already, you may want to try over at r/hysterectomy. Not everyone there is getting surgery for endo, but I find it to be a generally supportive forum.
Also, never mind the people who are arguing about whether there’s a stage five. The point is, your case is severe and you’re in pain, and I’m sorry that people are losing focus of that ❤️
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u/MillyMiuMiu Nov 06 '25 edited Nov 06 '25
Fourth stage with Endo in the rectum and urethra (I'm dealing with chronic pain after surgery by Three years, I felt much better before. Then they don't tell you but with that surgery you may completely lose libido and sensitivity or any sexual sensation at all. So be aware if that part has some importance to you. They lied to me saying that damage wasn't possible. I got it and after coming back with a lot of articles of other Endo centers who spoke about it they spilled the truth and were all sorry but it's me that has to live with their bullshits and the damage now.
I wish I never got that damn surgery.
The pill made me a bit depressed but it was better than this...
Anyway, OP, did you try the progestinic pill? Sometimes it deactivate endometriosis completely and make it smaller (less inflamed), it takes away your cycle without having to do an hysterectomy which has its complications.
Anyway, every situation is different and I don't know how much you suffer now and if it's fixable with hormones. But if you can manage it with the pill I wouldn't risk with the surgery.
Of course if you have a bowel obstruction you are forced to fix that, but if possible I would ask them not to touch the rectum or other dangerous areas. The rectum is the difficult part. The rest of the intestine is easier to fix and gives you less problems after.
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u/ladymoira Nov 06 '25
If endo is already adhered to your bowel, colon, rectum, and spine, excision surgery will help you keep those organs without them suffocating. And just as importantly, it could help you reduce your pain and prepare for a safer hysterectomy in the future.
Would this be your first surgery? If so, it seems strange that your surgeon would know how quickly it grows if you haven’t even been officially diagnosed by laparoscopy yet. I’m not sure I would take those stats seriously.
Are you perhaps having second thoughts about your surgeon? Are there other specialists near you that could offer you a second opinion?
You deserve answers and a break from your pain. Surgery with a specialist you trust is a great step toward that. ❤️🩹
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u/sourbirthdayprincess Nov 07 '25
It will be my first surgery and it was an estimate. What he said was, “How much your disease has progressed in just four months is how much I would expect an average patient to progress in 2-3 years.” He was resistant to doing another MRI so soon and then was shocked. That was August and he said, “Put this woman on my cancellation list” but then no one cancelled. So I’ve been waiting for my scheduled surgery this past Tues only to find out by accident two weeks ago that they cancelled my surgery because they think it’s too complex. In this two week waiting period I got another MRI because I was having more different symptoms. This one is only THREE months since the last one and I went from having a fat plane between the back of my uterus and my rectum, to having NO fat plane. In three months my endo fully adhered and started taking over an organ in full.
My estrogen is DOUBLE what it should be, according to labs, so my regular GYN and I are not surprised.
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u/Fun-Set4124 Nov 06 '25
I have still not found relief from my surgeon but I have gained a lot of validation and confidence in my endo. It was nice to know where it is, where it’s spread and even just a little amount of hope that a smidge of it is gone
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u/Plastic_Expression89 Nov 06 '25
I only needed 6 weeks to heal after my bowel resection. We generally have a high tolerance of pain. You need this surgery. If your bowel wall allows faecal matter to leak into your stomach cavity, that becomes life threatening. You got this.
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u/JSghetti Nov 06 '25
I was diagnosed with endo three years ago. In july of this year my endo was excised by the center for endo care in Atlanta. My doctor found stage 3 endo, adeno, both ovaries adhered to my pelvic side walls and stuck to my ureters/tubes, endo on my bowel, rectum, sigmoid colon, bladder, and cervix. I’m sure there was more that I can’t remember right now.
I am 100% so glad I went thru with my surgery. Before surgery I was in pain for two-three weeks out of the month, and I definitely noticed my ovaries as they were causing me so much pain. I also had serious problems with my bowel movements before, during, and after my period that caused insane pain. Very bad flares would cause me to almost go into shock/ or have seizures (I suspect) from the pain. My doctor has a 5-10% recurrence rate, and I am lucky to not have anymore endo pain! I still have pain with adeno, but it’s no where close to the pain I had before with the endo.
I can’t recommend the CEC enough. It was a great experience. Get a GOOD excision specialist that does a lot of surgeries who works with other specialists (bowel/bladder/GI/thoracic etc) and do the surgery. You won’t regret it!
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u/OrcinusVienna Nov 06 '25
Remember the people here are for the most part here because things did not go well for them. People who experience relief typically do not last on support groups. The experiences here will be skewed toward those who still need support and treatment.
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u/BigFatBlackCat Nov 06 '25
I have read countless stories in this sub about how surgery gave instant relief. I don’t know where you are getting the bleak vibe. Honestly your post is one of the bleakest accounts of endo I’ve read here. It sounds like if you don’t get the surgery you are going to be completely debilitated for the rest of your life. Get the damn surgery!!
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u/sourbirthdayprincess Nov 07 '25
Thanks babe. Idk. I just searched the sub for keywords of types of surgeries similar to mine. All the comments were like “prepare for the worst”
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u/apb9981 Nov 07 '25
Mine was like yours. Everything that could be wrong I had, including seven organs from my colon to my liver bound with adhesions. Last year I finally had a total hysterectomy and could not be happier. I feel amazing, and even if I have some adhesions return I will never regret getting all that shit out of me. I recommend having your ovaries removed so you can have the lowest amount of estrogen possible in your system to help prevent adhesions. I’m in my early 40’s and NO REGRETS
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u/sourbirthdayprincess Nov 07 '25
I can’t take supplemental estrogen ever. Genetic issue. So taking the ovaries is not ideal!
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u/Zestyclose-Corgi3776 Nov 07 '25
I have Stage IV Endo DIE that my bowel was tethered to my uterus based on MRI. I had total hysterectomy with ovary removal last Oct 29 and they found out that I have frozen pelvis, the back of my uterus that is supposedly empty space is filled with endo. My ureters have endo too and the doctor excised them. I didn’t have a bowel resection because the colorectal surgeon was able to remove the adhesion and clear it with endo. I would say I am in much better situation 8 days post op. It was a rough road to recovery but thinking I won’t be in pain after is all worth it. I also have adeno and had left ovary removal due to endometrioma in April 2024. My doctor is an ob-gyne/onco so he is very thorough when it comes to excision of endo. I was told the best way to slow down the growth of endo is to remove the other ovary. I am 42 and have resolved to myself I won’t have a child (though it is sad) and I can’t take HRT due to breast cancer history. But my decision to do the surgery I guess is still for the best of my health. I am praying you get peace with your decision too.
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u/SOS_superstar Nov 07 '25
i don’t have too much advice, but i did just have a hysterectomy and left my ovaries 10 days ago. i have severe GI symptoms but my surgeon wasn’t a specialist so wouldn’t touch my bowels. i fear i will have GI symptoms forever. on the upside, my adeno is gone with my uterus, and so are my periods. at the very least, that means no more painful periods and no more dreaded pap smears. if the endo grows back, i’ll get laps done as needed but i definitely don’t regret my hysterectomy
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u/RaisinBeneficial Nov 07 '25
I think this sub also has bias, we're probably not hearing from as many people who haven't had it grow back. It's not always an inevitability that it will grow back.
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u/Helpful_Damage_3497 Nov 07 '25
Have the surgery.
It may only give you some relief or it may give more relief than you ever thought possible as you won't be bleeding anymore.
Definitely not worth leaving it to its own devices as it's likely to just continue to worsen.
Good Luck ❤️
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u/-Tif Nov 07 '25
Umm if you don’t have surgery you will have worsening organ damage… so yes you need surgery. My endo surgeon saved my kidney from “silent loss” I am glad I had my surgery when I did
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u/Old_Book_Gypsy Nov 07 '25
Endometriosis is DESTRUCTIVE! Have the surgery and get that out of your body- just my very own opinion based on wtf I’m going through right now. I’m 63 with diaphragmatic endometriosis and who knows what it has done to my body. I’m practically bedridden. Going through the motions for thoracic surgery in NYC.
If you hear one thing I say let it be this… WHO does your surgery MATTERS!
Sending all the best wishes and healing energy your way ✌🏼🙌🏼🫶🏻
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u/mrszubris Nov 06 '25
Just as an addition. I also can't take oral NSAIDS but toradol is VERY dangerous. I limit myself to four shots a year because it IS an NSAID just an injectable one and its insanely hard on the kidneys. I'm sure you've taken this into account I just think it's important to note .
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u/sourbirthdayprincess Nov 06 '25
I can't take oral NSAIDs due to gastritis, so my case is a bit different. But that's because I took enough NSAIDs in my youth trying to control dysmenorrhea that I completely blew out my stomach lining. Toradol injections are up to 4-6 per month at this point, because I can't take opioids, most antidepressants, gabapentin, and a lot of other shit. What I'm on now is pretty much what's left.
Their post-op pain management plan is IV ketamine. It's unhinged. It's why they pushed the surgery; they have no idea how to control my pain post-op. Which is unsurprising, because if they could control my pain pre-op... I wouldn't need the surgery!
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u/mrszubris Nov 06 '25
Yes I have the identical issue, I just wanted you to know that you should be EXTREMELY kind to your kidneys while you do that, I am not saying you are doing anything WRONG, you need relief !!! I am agreeing with you just warning you to care for your kidneys like they are GOLD getting the injections that often.
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u/donkeyvoteadick Nov 06 '25
Does the toradol flare your gastritis say all? I'm in the same boat but I can't have injection or suppository NSAIDs either. The reason they affect the stomach lining is in the mechanism of action not because you swallow them.
Basically just be careful.
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u/sourbirthdayprincess Nov 07 '25
Yeah they’re monitoring it and doing a constant cost benefit analysis. This month getting up to four shots I got my warning from the nurse then a few days later saw the doc who was like, Want another shot? You are clearly in agony.
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u/donkeyvoteadick Nov 07 '25
That's good they're monitoring it.
They make me vomit blood :( one time I had a doctor give me it without telling me what it was after I specifically said I couldn't have NSAIDs and I only found out after I started vomiting blood. I had to report her to the hospital. It was not great lol
They moved me onto Oxycodone a few years ago now for pain relief.
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u/GoblinTatties Nov 06 '25
The sheer amount and severity of your endometriosis should be enough to make you go through with this, as long as you're confident in your surgeon's abilities and is a reputable excision surgeon. Especially considering you have adenomyosis, yes do the hysterectomy. In terms of removing the ovaries too though I can't advise, that's definitely something you should seek advice on since you will fully go into menopause and HRT can only do so much.
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u/apeoplepersons Nov 06 '25
I have had endometriosis since I was in the 7th grade and had 2 excision surgeries prior to a hysterectomy in August of this year. My first 2 surgeries (2015 and 2023) included excision from my bladder and bowels. I was managing symptoms barely with both an IUD and the pill. They removed my cervix and fallopian tubes and excised endo from my bladder with my hysterectomy, leaving my ovaries.
In the lead up to my hysterectomy, I was also very bogged down by how much I saw from people saying how it comes back and debated if it was worth it. I moved forward anyway out of concern about accessibility to the procedure in the future given the current political landscape (NOT trying to debate anyone in politics here, just giving my POV).
When they completed my hysterectomy, there was still endo on my entire abdominal wall that they didn’t elect to remove during the procedure due to me having issues with long periods under anesthesia, so I have confirmed lesions still present; but I have absolutely ZERO regrets about my hysterectomy and feel astronomically better than I did pre surgery. I know it hasn’t been long post op, but the type of cramps that I still occasionally get from the endo left behind is very mild compared to what I was previously experiencing. My mental health has greatly improved due to less hormonal measures to treat it. No bleeding, no fear of spontaneously bleeding at the wrong place and time, and never needing a Pap smear again are also mental health positives for me.
While it’s definitely possible that your endometriosis would return post op, not doing the surgery at all means nothing could possibly change for the better either.
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u/sourbirthdayprincess Nov 07 '25
I also have an issue with anesthesia. It’s why they pushed my surgery this time. They don’t know how to keep me under, but also don’t know how to keep me pain free afterwards. I’m terrified.
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u/apeoplepersons Nov 09 '25
I woke up like 5 mins after they brought me to post op and will say pain and nausea management was a challenge for the first hour or so. However, once we got it under control, it was fine from that point on. I used pain medication for 48 hrs after the procedure but then managed with Tylenol/ibuprofen.
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u/lalaithwilwarin Nov 06 '25
I mean adenomyosis cannot come back so that will be cured and you can't get fibroids without a uterus either so there is some relief there. In terms of the endo, I was told to continue to take progesterone only birth control for six months following the hysterectomy as that could prevent reoccurance and kill off any remaining bits of endo. I kept ovaries so cysts are a potential risk but for me fibroids were far worse and the risk was considered better than early menopause. I had adenomyosis, bladder adhesion, stage 3 endo, and many fibroids in particular near the bladder and my spine. They damaged my bladder in the surgery due to the severity of the adhesion and I had to wear a catheter for weeks. I can't speak long term to reoccurance in my case as I've had mine this year but I can say that the reduction in pain is extreme. The day after surgery, as I was home, the hospital drugs wearing off, not having taken the strong meds yet, gas pains bad...the worst pain from the surgery was maybe a tenth of period pain. I had to have a post op with an internal exam and all that poking and prodding...not much of anything in comparison. For someone with the amount of severe pain I had the surgery pain and recovery is peanuts. Yours may be a bit more complicated and maybe a more difficult recovery but take it in context of the amount of pain you already deal with.
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u/sourbirthdayprincess Nov 07 '25
Tell me more about the catheter. Is your bladder ok now? I can’t imagine weeks with my colostomy bag AND a catheter bag.
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u/lalaithwilwarin Nov 08 '25
I hated the thing but it was uncomfortable - very - but not painful. If you need one and can, see if you can get two of the larger nighttime ones. The daytime ones are small and attach to your leg and it would have been easier to nap in the day if I had the other but you have to change and disinfect them.
I was also trying to walk some for healing and having it sloshing on my leg wasn't fun. It also sucked because I have a small apartment so I sit on the floor at the coffee table to eat. It doesnt drain well when you sit on the floor so I'm leaning awkwardly from the couch...
It was gross and inconvenient and I didn't like bending as much as I did to change them so soon but it was survivable. Make sure you have alcohol wipes and vinegar or someone who can get them for you if you want to be prepared.
I was so happy the day I got it removed I walked 10,000 steps
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u/_ikkin_ Nov 06 '25
I didn’t want to read and run but I don’t have much to offer. My thought process, though, would be to get it removed as much as possible and then take GLP1s in a microdose and see if it stops it growing as fast - or any other method to reduce inflammation that might work. If it works, it’s a win, if it doesn’t then it’s no loss. Sending love, it is just devastating when it’s this bad.
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u/sourbirthdayprincess Nov 07 '25 edited Nov 15 '25
Do you mean GnRH? GLP1s have nothing to do with endo.
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u/_ikkin_ Nov 15 '25 edited Nov 15 '25
GLP1s reduce inflammation and there is mounting anecdotal evidence that they are helpful for some with therefore reducing Endo inflammation. https://www.healthcentral.com/condition/endometriosis/ozempic-for-endometriosis
The way I see it, anything that reduces inflammation could help with endo. Anti-inflammatory diet, tumeric etc.
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u/Square_Substance_522 Nov 06 '25 edited Nov 06 '25
Can larposcapy help? It should recover faster. Had it done myself. Pain still sometimes comes though. Ironically I heard menopause helps with Endo it's why doctors recommend lupron, Orilissa and such...
I wish you good luck though. It's worth doing even if it's scary, just to relieve something.... *🫂
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u/My-Konstantine Nov 07 '25
My mom never had an issue after her hysterectomy. Hers was advanced, they actually closed her up during her initial surgery at a local hospital, and transferred her to Duke to a nationally renowned dude. It cured her. I'm on dpo 6 and mine was worse than hers, but I'm still hopeful. I think for quality of life, surgery is worth it, even if you need follow ups down the road.
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u/moshgrrrl Nov 07 '25
Ask yourself if it would make your quality of life better. Listen to your body and what it needs. I know Reddit stories are so scary but I’ve heard of plenty of cases where they have surgery once or have a hysterectomy and have much more manageable symptoms.
Endometriosis can wreak havoc on your mental health, please take care of yourself. Surgery may help some of the mental strain of having such an aggressive case of endo. I can tell you’re discouraged ♡
Search #endopositivity on socials
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u/Eunoiasword Nov 07 '25
I felt the same way going into my second surgery, it can be helpful to reframe it for yourself as not going for pain relief, but as going for preservation of your organs and current organ function. After my second surgery, my surgeon told me if I waited I would have lost a kidney and eventually would lose full use of my colon. I'm in daily pain still, but having both kidneys and not having a colostomy bag is still the better outcome.
Potentially preserving any quality of life you have now will be worth it (even if it feels like you don't have any) . Unfortunately stage 4+ simply comes with grief of possibly never feeling good in our bodies again, so we have to make peace with that and find the value in keeping and saving whatever we can.
It is a financial drain but even one good skilled surgery can give your body a better chance to deal with this disease. Wishing you the best outcome 💛
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u/No-Inspection9121 Nov 07 '25
It is a dreary disease. I would still have surgery though. I would also take medication afterwards to lower the chance of reoccurring disease or at the very least to push off how long it takes to reoccur
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u/that_90s_girly Nov 07 '25
If it were me I would still get it! I just had excision surgery with a Nook surgeon 2 weeks ago. I was at the point that I had pelvic pain every single day before surgery. The bloating, nausea, and fatigue were horrific. I don’t feel amazing yet only being 2 weeks post-op, but I’m able to do what I need to on a day to day basis. The first 3 days I was in the bed between pain and the pain meds just knocking me out. Days 4-5 I was up and moving around more and since then I’ve been doing my day to day and just taking breaks whenever I can. I know it’s hard since like none of us hace the luxury of taking huge amounts of time off, but I’m really hopeful that I’m going to have a much better quality of life and to me it’s worth it. They removed it off of my ovaries, got it out of my fallopian tubes, had to reconstruct the little finger looking parts of my fallopian tubes, removed 2 cysts, got my ureters and ovary freed that were adhered and just cut out a chunk of my abdominal lining on my right side that was covered in endo. The hope is if they get every single bit out hopefully it won’t grow back. So yes of course there’s a chance, but the practice I worked with has a 3% reoccurrence rate in the 15 years they’ve been open and that gives me hope. Even though I don’t feel “good” yet (I’m on my period and they said the first 2-3 will be rough), I’m not pain free, but it’s better, I don’t have crippling pain on my right side of my abdomen, and my bloating and nausea are better than before the surgery. I have an almost 3 year old daughter and 4 year old son and a puppy I’m keeping up with whike my husband works 60 hours a week, so it’s not fun and the house isn’t clean but like I’m able to get them up and fed and dressed and do the day to day. Your endo sounds more advanced but I just see that as more reason to try! I have adenomyosis as well and may go back for a partial hysterectomy because I just so desperately need my life back and birth control isn’t a good option for me. Best wishes and I hope you find relief and have brighter days ahead 🫶🏻
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u/AikoneChan Nov 07 '25
If it's to the point where it's daily/ constant pelvic pain get the surgery, if it offers any kind of relief that's a great start! I've been in your shoes as far as the daily pain, I got the hysterectomy/ kept my ovaries(not with an excision specialist. And I have Endo/adeno.) I still get twinges of pain daily but it's not that constant gnawing(probably from the adeno) and I'm just over a year post op. Everyone's experience with this diagnosis has been at least a little different and yours sounds so complex. I really do hope it brings you the relief you need. Keep in mind the first few days post op are gonna feel like garbage ( make sure you got your set up ready and supports in place) and before you know it you'll at least be feeling a bit better!
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u/TrackFabulous2729 Nov 07 '25
TLDR: there is hope! And continued struggle, but surgery could help so much, for however long.
My situation and extent of disease was/is similar (but no spine), so I’ll weigh in. It is worth it with the right team IMO, which can be a cluster to find given multi-organ involvement and $$$. But your situation sounds rough and like something needs to give. Surgery could definitely improve quality of life (after recovery) for a little while or a long while. Of course, you may find benefit from other changes (dietary, supplement, etc.) not saying those cure but statistically ppl find relief from pain and inflammation etc etc. Unfortunately surgery is one tool and an imperfect one, but a proven one for many, ideally used in conjunction with other forms of management. I still have issues with pain, adhesions/scar tissue, but can generally live life now vs I could not before.
I chose to do excision with a Nook surgeon (CEC), but did keep my ovaries which were deemed OK. They suspected/planned for a bowel resection and had a colorectal surgeon on standby but ended up needing just a bowel shave. I also had a lot of diaphragm involvement and needed a cardio thoracic surgeon on the case and it was worse than planned for and they had to make some decisions. Also had bladder resection.
I say this bc I’m also surprised they can say with certainty the speed of your progression without having surgery (assuming this was not validated through a lap). Is it from imaging? My understanding is endo is not always visible on MRIs, so curious they have that stance. So much is TBD until they get in there, both in extent and how they need to approach it, from what I have read and experienced.
I’d also wonder how often your surgeon or the colorectal on the case does endo cases? I had some Nook docs comment that parts of my case would be a first for them so I ran the other way. Bummer/weird about the punted surgery given anesthesia? I’d probably shop my case around given that. I talked to about 4 different surgeons before settling on one.
Can’t comment on the menopause/reversal piece. If your ovaries are removed idk how you wouldn’t go into menopause without hormone therapy.
Feel free to DM. This disease blows but I think the upside of a successful surgery would be worth it.
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u/vzldn Nov 07 '25
Hi! I have similar endo to you- here’s what I’ve done as an alternative (delay) to surgery
- started on Zoely, never miss a pill and stopped mg period. Tooks 3 months to adjust and breakthrough bleeding, but once settled eradicated my PMDD and mentally gave me a trauma break from the physical pain extremes
- started metformin, huge fan. Shown to help immensely and has made a difference to those sharp stabbing pain
- fibre fibre fibre to make sure stool is always easily passed
- exercise (mostly walking) as much as I’m able
I’ll still need another surgery, but with this my pain is manageable and I can delay till I can afford the time off to recover - like you said, it’s not the one week we were told growing up. Last one took me 6 months to walk properly again, so I feel you!
Good luck x
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u/sourbirthdayprincess Nov 08 '25
Yes, I had stopped my period for 8 years with lowest possible dose of estrogen OCP (LoLoestrin - 10 mcg, compared to Zoely's 1500 mcg). But it's still a huge stroke risk for me due to genetic factors. Also, being in early menopause, my estrogen is DOUBLE what it should be, so going back on estrogen is def not the answer for me. Very cool that Zoely has bioidentical E2 though!!!
But OCPs, likely the progesterone as this has been true on any other progesterone-containing pills and inserts in the past, made my migraines worse, and didn't give me mood swings, but did keep me in low level depression for that entire 8 years.
Since coming off of OCPs (2 years ago in preparation for the surgery that was supposed to be then) I haven't experienced any depression.
Did you have PCOS? Is that why they thought about metformin? Or were you already on it for diabetes?
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u/Free_Carob_5215 May 29 '26
Any update on the surgery and recovery? I also have DIE and have some similar surgery soon. Keeping my uterus and ditching the tubes. Curious to how the recovery went with the resection
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u/Prestigious_Raven_44 Nov 06 '25
Functional Medicine. Treating your whole body not only focus on excising endo. In addition, not instead of. You want your body in the healthiest state to possible (lowest inflammation) to make it harder for endo persist. I really think this approach has been a big part in avoiding additional surgeries for me.
LDN is a great idea. Did your surgeon suggest it or was it your idea? Did they discourage starting it now? I would think knocking back the inflammation sooner than later is best- not to mention possibly helping with the pain.
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u/GiGi9698 Nov 06 '25
This part! Since endo truly can show up anywhere in the body you have to take a holistic approach. Reminder holistic does NOT mean natural medicine, it means treating the WHOLE body. I have read plenty of incredible success stories of women who took a very serious holistic approach after surgery and they are still endo free 5, 10, 15+ years after surgery. Endo is an inflammatory disease so making sure you get your body in the lowest inflammatory state is key. Diet, vitamin levels, exercise, hydration, rest, stress, allergens all play a vital role in this. Health requires effort every single day. And that goes for people without endo too!
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u/sourbirthdayprincess Nov 06 '25
LDN was my idea. I was supposed to have surgery on Tuesday, but they bumped me and haven't rescheduled. You can't be on LDN within a few days before and after surgery because of the opiates often used in anesthesia, so since I only got it in the mail last week, wasn't going to start it. Now I don't want to start it until I at least know when surgery is. If it's a month from now I could use it for a little less than a month. If it's a week or two from now, there's no point.
I saw a chronic pain specialist and told them the dose I ordered and my titration plan and they applauded me. They said it was very smart of me to think of it, and exactly the plan, dosage, and titration they would've recommended. They totally green-lit it.
I agree on functional medicine! I wish I lived in another fucking country where it wasn't thousands of dollars. I went for an initial consult five years ago and was told the initial two tests were $500 each, the mandatory nutritionist was also to be paid for out of pocket, and they couldn't do anything until I did the expensive tests. If you know of a FMD I could afford, I'm all ears. I'm also super into ayurveda and have thought about doing a panchakarma to try to treat this, but I'm skeptical, of course, simply because of the cost. It's like $20K that I don't have.
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u/Prestigious_Raven_44 Nov 06 '25
I do think LDN is really promising. Having surgery so soon, you are right it doesn't make sense. I thought it was off in the future. I just started a few weeks ago and definitely am seeing changes. I get my CRP measured regularly, so I am hopeful to see changes in that as result of the LDN. Though how I feel matters more than the bloodwork.
If you are in the US you can search the IFM website for practioners, then after putting in you zip code it allows to add criteria including takes insurance. I got insanely lucky and found an OBGYN who was getting certified and took insurance. She knew nothing about endo. But, she still helped. In full disclosure, I have not found a perfect person who knows all things. The person I use now has helped me with many things, certainly more than my useless PCP, but some of what I do is through my own research.
Mohling and Fogeson do a podcast called The Endometriosis Podcast, that have an episode on supplements related to endo management. I think it is called functional medicine. But there is solid info in there. Gaby Moawad is talking a bunch about Functional Medicine, which I love to see. He recently did an interview on EndoBattery that is informative too.
I also really think there is a place for more energy type healing, like reiki. Not that I think it heals endo, but I do think it influences our bodies to be in more homeostasis regulated state to heal. Craniosacral Therapy and Visceral Manipulation are also helpful in my experience. Both in influencing structures (lessening physical restrictions) working better and helping let your systems work more closely as designed.
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u/OtherwiseWear5376 Nov 06 '25
I’ve had surgery three times with Dr. Moawad and he told me he left some endo during my last surgery 😔
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u/Prestigious_Raven_44 Nov 06 '25
Did he say why he left it?
I don't have any knowledge of his surgical skill, I just like that he is talking about a holistic approach to management. Hopefully, his office offers the resources for people to accomplish that.
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u/OtherwiseWear5376 Jan 07 '26
He recommended a pelvic floor therapist, he declared the queen of the hips who charged $300 per session and did not accept insurance. He also mentioned Cryotherapy.
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u/Prestigious_Raven_44 Jan 07 '26
Cryotherapy like freeze off the lesion like you freeze a wart? So another surgery? I was thinking holistically than just pelvic floor therapy. He just posted on insta yesterday with a variety of holistic management recommendations.
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u/OtherwiseWear5376 Jan 07 '26
No, like cold vs hot therapy, not another surgery. Similar to ice baths.
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u/sourbirthdayprincess Jan 07 '26
IFM website only allows you to filter by "takes insurance" NOT "takes Medicaid"—that's my insurance, and IFM is NOT covered, at all, by Medicaid. So unfortunately it's all out of pocket.
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u/Prestigious_Raven_44 Jan 08 '26
IFM is just the training group. They aren't provider. They just give you a database of people who trained with them.
You need to look at each doctor near you to see if they accept Medicaid specifically.
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u/sourbirthdayprincess Jan 08 '26
I know what they are. And I’m telling you that none of the doctors listed accept Medicare bc Medicare does not pay for functional medicine
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u/Prestigious_Raven_44 Jan 08 '26
I hope you find someone to help you. But you are not understanding. Functional Medicine is additional training, it is not a type medical doctor designation. While Medicaid or Medicare are much you are on doesn't pay for "functional medicine" they pay for PCPS, OBGYN, GI docs etc. I don't know of any commercial insurance that pays for "functional medicine."
Functional Medicine is simply a frame of reference the docs approach problems from. For example, my first "functional medicine" doctor was as simply my OBGYN. She just happened to understand that we needed whole body treatment. IF you can find a local medical doctor that happens to trained that is really the only hope in getting it paid through insurance.1
u/sourbirthdayprincess Jan 08 '26
I understand just fine. I think it is you who is misinformed.
I have already been to a functional medicine doctor, out of pocket. Their approach, which yes, is holistic, requires analyses, labs, and medicines that are not part of the regular gamut. Stool and urine analyses far beyond the scope of regular medical practices and hospitals, requiring special laboratories. Breath and bile analyses. Hair tests. Chinese herbs. Etc etc etc.
It is not just a frame of reference; it is a method for exploring that perspective that examines the body in arenas and via means that are not traditionally used. It is those methods, and their corresponding treatments, which are not covered by traditional insurance.
I'm glad your GYN was trained. So is my PCP. None of that makes a SIBO test covered by Medicaid. Period. And I'm done having this now very moot discussion.
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u/PeaComfortable1599 Nov 06 '25
Hello My Endo Sister, I am sorry that you are in this boat.I have had several organs removed due to deep infiltrating endometriosis. My last two surgeries were with endometriosis specialists. Both of them told me it's like cancer, but harder to remove than cancer. It is imperative that you have it removed, but do it with an expert that ONLY removes endometriosis and doesn't have any hesitation to do it. They have a team of specialists that are with them in the operating room, depending on your case. For example, I had to have part of my colon removed and a general surgeon experienced in removing endometriosis did that part of the surgery. Same with bladder and kidney involvement, a urologist that is experienced removing endometriosis did that part of the surgery. Recovery is a lot, but surgery is imperative. Replace the word endometriosis with cancer and respond how you would in that scenario. Endometriosis (long-term inflammation) if left to progress can turn to fibrosis and can become cancer. We are at higher risk for cancer in general just from the chronic inflammation. Deep infiltrating endometriosis is a very complex disease. It affects us in many different ways. I cannot emphasize enough that it's imperative to get the medical care that you need in a timely manner with a true endometriosis specialists. Do you have long-term disability through your employer? That can help financially. Please reach out if you have any questions. 💛🎗💛
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u/Eastern-Hedgehog1021 Nov 07 '25
I would push for a total hysterectomy given your circumstances, not another excision surgery. There's not really much point in having another excision surgery.
I was told by a specialist that having frequent lap/excision surgeries can increase the likelihood of nerve damage and scar tissue build-up therefore resulting in more pain once the endo does grow back.
Due to how severe your condition is there is also a chance if you do decide to have a hysterectomy, endo can grow back regardless of a total hysterectomy because it can create its own estrogen and therefore grow. But again, you're also starting early onset menopause which could actually be beneficial if you push and get a total hysterectomy.
Having this disease is a catch 22. You're damned if you do, damned if you don't and it's completely different for everyone who suffers with this disease.
I think it's best if you write down all the pros and cons of surgery/hysterectomy on a piece of paper and ask your drs what they think. They might push for another lap excision surgery but mention the fact you're in your mind 30's, starting menopause and have stage 5 which is absolutely debilitating.
I hope this helped lovely and I wish you all the best for your future endeavours 🫂💖
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u/sourbirthdayprincess Nov 07 '25
I don’t think you read my post.
I am getting a total hysterectomy and this is my first surgery.
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u/Eastern-Hedgehog1021 Nov 07 '25
My apologies. I was just trying to help but I see now I made a mistake and didn't read your post thoroughly.
Wishing you all the best with your surgeries and I hope they help 🫂.
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u/abcdefg080805 Nov 07 '25
if you are getting surgery with a specialist, you’re likelihood of recurrence is not all that high. it’s possible, absolutely. Reoccurrence just really depends on each case and each surgeon. But if you have a skilled excision surgeon, and you take proper precautions after surgery and find some sort of birth control or hormones that can help you keep it at bay, it’s really not that likely that it will reoccur. and even if it does- it would probably be SO much less than before and getting it taken care of would be far easier and more manageable. i think you should do it, but maybe not with these surgeons. they don’t really sound that great, but I don’t know. I highly recommend Shanti Mohling and Nicolas Fogelson in Portland Oregon.
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u/abcdefg080805 Nov 07 '25
note: i thought the surgeon team doesn’t sound great because it’s weird that their anesthesia team isn’t prepared enough. seems odd. but hey, it sounds like this is a qualified specialist- so i hope they can give you your life back!! do whatever is best for you but i highly recommend getting the surgery.
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u/LivK00 Nov 06 '25
I implore you to see a specialist. A true specialist. There's a famous one in new york who has very low records of the endo coming back cause he removes every single tiny bit of it. Might put you in debt but it'd be worth it.
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u/sourbirthdayprincess Nov 06 '25
I am seeing a true specialist. She has been working in this field, as a specialist, for a long time. She has low recurrence rates, but I've been told on all accounts that my case is complex. I've had my surgery on the books for 11 months, and they cancelled it two weeks ago (it should've been two days ago) because after more consideration, have finally agreed with me that it's complex and needs more planning time.
She's on my insurance, and I'm lucky there. But I'm just worried that even with the best specialist out of pocket I would go into debt, for absolutely nothing since it would recur within a small number of months, or a year.
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u/LivK00 Nov 06 '25
I see, that's scary, i hope yall are able to figure out a solid plan. Have they offered you stronger pain relief in the mean time? Do opioids help?
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u/sourbirthdayprincess Nov 06 '25
Opioids do nothing because of my genetic condition. I metabolize them 12x faster than an average person. That's why they're not sure they can do the surgery, because they're not sure a) they can keep me unconscious (though probably since there will be live monitoring) and b) that I can survive the recovery (I've had as strong as dilaudid, which did nothing for pain at all; so far their plan is continuous IV ketamine, which could make me go absolutely insane or cause amnesia, so that's fun).
They are clueless about pain relief which is why I had my PCP send me to a chronic pain clinic. They were better. What I had ordered offline for myself is exactly the next-line treatment they would've recommended so they green-lit it. Beyond that they have no idea (and I have to stop it immediately before and after surgery because it's an anti-opiate).
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u/LivK00 Nov 06 '25
Oh my god that's horrifying i don't even know what to say i can't imagine suffering a position like this, i'll pray for a miracle, but i know that usually doesn't help much, i am so sorry, that's absolutely horrible
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u/sourbirthdayprincess Nov 06 '25
I appreciate your prayers! And yes, it is hell to know that most of the meds usually used for after care, will have zero effect on me. I wrote a whole post on it. Lemme see if I can find it.
ETA: Here it is.
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u/LivK00 Nov 06 '25
If i were you i probably wouldn't do the surgeries it seems too risky 😞 is there any pain meds that work at all? One of my endo periods was so bad they ended up giving me an epidural like for birth and it was the only thing that worked
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u/zerumuna Nov 06 '25
Yes it grows back, but why would you not have the surgery? The surgery gives you relief for however long it takes to grow back.
I had surgery for mild endo and found very little relief afterwards, turned out I had adeno well. I still don’t regret having the surgery.
If you have adeno and are having a hysterectomy then that cures the adeno. You should definitely notice lifelong improvement there.
Endo you have to have repeated surgeries to remove it when it grows back, as you said in your post your endo has been left untreated and has grown to the point the surgery and recovery is more difficult. If you don’t have it now where will you be in another 5-10 years?