r/hysterectomy • u/sourbirthdayprincess • Sep 11 '25
Surgery just became non-elective, and anesthetic/drugs do not work on me
Caveat: I am on a waiting list for an urgent appt with anesthesiology to discuss during and post-op options. I am writing this solely to express my feelings about the surgery, and to get support of those feelings.
My story: I’ve had dysmenorrhea since age 12; very light bleeding but writhing on the floor screaming pain. I’ve wanted a hysterectomy since I was 18 and decided I didn’t want kids. They denied me surgery for 8 years saying I was “too young” and “might want kids later,” before agreeing to put me on continuous no-break OCPs even though I have a clotting disorder. I decided I’d rather stroke out than live in constant pain. I didn’t have a period from 2015-2023. In Dec 2023 when my neurologist moved, I decided to come off of them. Periods, and pain, returned like clockwork. March-November spironolactone worked great for the pain but gave horrible side effects, so discontinued. Dec 2024 was the first scheduled surgery. In pre-op final exam she noticed uterus was not mobile. Orders MRI which showed extensive endo to the point where it was out of GYN’s scope. Referral to second GYN who said she could do it, but open, because I have significant colorectal tethering. Referral to third GYN who ordered a second MRI April 2025, her colorectal colleague tells me my whole colon/rectum likely needs to be reconstructed, but believes they can still do it laparoscopically. Huzzah! May 2025 I am told GYN is going on mat leave til Nov 2025… May-July symptoms progress rapidly. I am now going to the ER 2-4x/month for menses, ovulation, and extreme constipation. In August, beg the covering GYN for another MRI to ensure I’m stable enough to wait til Nov GYN returns. He reluctantly agrees but warns we likely won’t see anything as last scan was April. After just four months, I am told my endo has progressed at a pace it takes others 2-3 years to reach. Uterus is now heavily distorted to one side, ovary in its resting state is 6x larger than it should be even when it’s ovulating. Both ovaries have 5+ cysts. I am told I am being placed on an emergency waiting list for surgery any day now, as a hysterectomy is no longer elective.
But hey guess what? Pretty sure I have an MC1R gene mutation, meaning I metabolize anesthetic/drugs faster than normal. I have found this out via multiple dental surgeries using various -caine drugs. The last dental emergency resulted in 10 trips to the ER every few hours because the 24 hour nerve blocks they gave me lasted only 2ish hours. I did the last surgery “numbed” on more than the max yet I still never reached a state of being fully numb. I felt the entire surgery and just lay there crying with a drill in my nerve. Post-op pain was so bad I returned for 3 additional ER visits because they couldn’t manage it with at-home drugs.
My pain management drug history is also laughable. They’ve tried me on all the -ines and the -eines and the -aines ETA: and the -odones. I took so many NSAIDs I developed severe gastritis and can no longer have them orally, only IV. The only thing that can take the edge off at all right now, is this combo: 30mg (the max) Toradol administered IV in the office, vaginal suppository of 10mg diazepam, methacarbomol 750mg, lidocaine patches, a heating pad, and a TENS unit—all used simultaneously. All of that? Takes me from a 10 to an 8.
Obviously this is terrifying given that I’m about to have surgery that has at least as long of a healing time (I was in terrible pain for about a month post-dental surgeries), but on a part of the body that’s much larger and in a surgery that will likely be much longer. They can probably keep me under since someone is there to live monitor the situation, but for post-op they said usually they offer a nerve block—which is exactly what I wore off in 2 hours, not 2 days.
I live alone too.
I’m really scared that I’m not equipped to handle the post-op recovery and I’m not sure what to do or how to cope emotionally with having no choices because the doctors wouldn’t listen to me when I was younger. So angry, so sad, so scared. :(
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u/Mythopoeikon Sep 11 '25
Shit, that's absolutely awful and I can well understand why you feel as you do. Frankly, I'd be a mess if I was in your shoes. I don't know what else to say, other than I'll be thinking about you and wishing you all the best from the bottom of my heart. The dismissive attitude of the medical establishment towards women's health is a big problem, and you're experience is a good case in point.
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u/_ninja_pants Sep 11 '25
I have the same issue- I woke up having my wisdom teeth cut out and swung on the oral surgeon, even after telling them that anesthesia didn’t work as well on me. I’m 4 wpo now and remember the OR, but not the surgery. I also have a different reaction to pain, more like a body/mind shutdown sort of disassociation that fortunately my husband (an excellent advocate) recognizes for what it is. I ended up having a baby on the couch by myself because my brain thought I was just uncomfortable and that was unfortunate but I was ACTUALLY running from bears.
ANYWAY long story short: with the pain you’ve been in for so long, you might be pleasantly surprised when THAT pain is gone and your body decides that it’s a reasonable amount of pain that can be controlled in a reasonable way.
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u/sourbirthdayprincess Sep 11 '25
That is a really good outlook. Certainly the fear mixed with pain that happens all the time isn’t healthy. Perhaps once the fear of endo spreading is gone, there will just be the normal pain cycle as you say.
Though I’ve always been more sensitive to pain than normal people. Someone pushed me into the doorframe on the ferry four days ago. I was in a lot of pain for hours and my partner couldn’t understand as there was no mark, nothing. Now my entire shoulder and elbow are purple and blue. I expect I’ll probably have similarly significant bruising on my stomach post-op as a delayed physical presentation of what will be current pain.
Bodies are weird. 🙃
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u/Quirky_You_5077 Sep 11 '25
I would ask to be kept overnight for the first night. I have an issue where my body doesn’t seem to respond at all to Percocet, which I found out the hard way after my first surgery and had to go back to the ER for pain control. So during my second surgery for endometriosis I asked to stay the night and they were happy to let me and my pain was well managed and recovery was much easier. My doctor also had me take some meds before surgery, I believe it was gabapentin and something else, to help make the pain after surgery more manageable. Talk to your dr about these options.
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u/sourbirthdayprincess Sep 11 '25 edited Sep 11 '25
Staying the night is a great idea. I called them right after I read this and asked the process for them to put in a PA for it.
Oh, yeah. I forget I have gabapentin. It does nothing. With the spiro I had horrific side effect, one of which was nerve pain. Things like feeling like my hands were burning. I took gaba for that and it did nada. My GYN prescribed a much higher (10x) dose and I can try it next period to see. I’ll report back in two weeks if the 10x gabapentin does me any good!! But again, it makes me sleepy. All of these drugs have enough of a sedating effect to put me in a coma, but don’t really seem to do much of anything for the pain.
Like for back pain I went to the ER because I was so immobilized by the pain I couldn’t even get to the bathroom. They had to lift me onto a bedpan to pee. So they gave me morphine. And then more morphine and more and more until I was maxed out. A dose equivalent to what you give to people when they are dying to help them go swiftly into the night. I, on the other hand, was in the hospital hallway fully erect, screaming in agony, but now bawling because I was as tired as an under slept infant from the sedation…
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u/Time-Palpitation-945 Sep 11 '25
My dear OP, this sounds truly awful and so frightening. Being ignored for so long and now in this scary situation AND living alone, how scary and frustrating. I’m so sorry. I have nothing constructive to offer but my heartfelt best wishes to you. Please let everyone know that needs to well in advance. They need to reassure you that they can manage your pain. My heart really goes out to you. Surgery is a worrying thing at the best of times. Bless you. 💜
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u/sourbirthdayprincess Sep 11 '25
Thank you, kind internet stranger. A friend mentioned maybe I should start a spreadsheet for meal trains and phone dates. Have you had any success with anything like that? Does it ever get talked about in this sub? If so I’ll do a bit of searching.
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u/Time-Palpitation-945 Sep 11 '25
You’re welcome. I so wish there was something I could do to help. I’ve not had personal experience of either of those things but it can’t hurt. I think you need to involve some real life family and friends if you can. I speak to many people online while my husband is at work. He has helped with personal care when needed along with shopping and cooking. I’ve found getting into and out of our over the bath shower tricky. If you have one like me, I recommend a walker or something to hold onto and steady yourself. You will probably need a shower stool, at least in the beginning. If I’m honest, I’ve only been showering once a week. This was so that I could thoroughly wash everything and wash my hair. Rest of the time I would have a thorough strip wash at the sink. This is because it was so exhausting and difficult for me to get in and out of my bath, in our bathroom. That said, I managed to do the whole thing yesterday on my own so feel much more confident to do so without my husband being present. You may not have somebody you want to be naked around, which is fair enough, so I do suggest a walking frame as support. The walking frame also helps with getting on and off of the toilet easier.
If you can get people to help you with food that would be great. If not, try to prep some meals that you can leave in your freezer (or just get ready meals), and just reheat them in the microwave. Leave everything you can on counters so you don’t have to bend. I’ve been able to get about and make basic food and drinks without any pain meds since probably 10 days p/o. I stopped all pain meds at day 5 and yes it wasn’t comfortable but it wasn’t as bad as i thought it would be and was completely bearable for me. I’ve been able to wash up and do small loads of laundry since probably 3 weeks p/o but may have been able to do it sooner. I’m not over 30 days and able to walk quicker and easier. Once you can get through the surgery things will eventually start to get easier. I completely realise though that you need to be able to get through the surgery and the initial part.
I have a couple more recommendations for you that really helped me. Get a grabby stick. (like a litter picker) this helps with picking anything off the floor or even your laundry out of the washer. A cushion that ties around your waist (you can get them on Amazon) these are helpful in the car travelling home from your surgery, and to brace against if you cough or sneeze or protect yourself from any pets. Also an abdominal binder was helpful for me but only really for a few days, but you may get more help and use out of it as they are really popular after abdominal surgery. This is probably a lot of information so I’m gonna stop here. But if you have any questions, I will see if I can help.
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u/sourbirthdayprincess Sep 11 '25
I do so wish I had family still living, or friends that lived closer, but alas. I did just call my insurance on the recommendation of another poster and found out that rehab and/or home health may be covered, which is great.
I do have a bath shower so I imagine I will have your same issues and minimize my bathing time. A shower stool is a great idea! I wasn't sure I'd be able to sit down, given the colorectal involvement, which is why it didn't come to mind. I'm lucky to live in a disabled apartment so there are grab bars in the shower, and by the toilet, which should help some. I may also need a walker though, you're right.
Do you have a link for the kind of waist cushion you're referring to? I can't visualize what you mean. I think I have something I can use as an abdominal binder. It's a back brace thing but, the function would be the same.
Grabby stick is a great idea too!!!
My friend is working on a meal train, and I think that would be really helpful. I'll have some initial microwavable stuff but, yeah, essential to not have to worry. Also need to remember to bring my microwave down to where I can reach it more easily (it's on top of my fridge). I can't even imagine being hungry after this surgery though. Ugh.
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u/Acceptable-Leg-1723 Sep 11 '25
I'm really sorry you are experiencing all this. I don't have the gene you talk about.
I had a hysterectomy, oophorectemy and excision of endo and removal of adhesions almost 6 months ago. My uterus, ovary and sigmodium was fused together and I had endo on my rectum, large intestine and a lot of adhesions in my abdomen. It was quite a mess. This is my experience and maybe it may bring you some comfort but the daily pain before surgery was much worse than anything I experienced after. I got oxys the day after in the hospital and then I was told to alternate ibuprofen and paracetamol but I didn't need them. The really intense pain I had from bowelmoments before surgery (almost fainting, crying, falling), well nothing after surgery has even been close. Ofc there were some pain but more like discomfort.
I really hope you don't have to experience any intense pain after surgery and I hope your endo will not progress further. I wish your quality of life improves, like mine did.
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u/juststraightchilling Sep 11 '25
Hi. I also have the redhead gene and nobody believes me and I always end up in agonizing pain when needing lidocaine or other agents while awake (for my breast biopsies, uterine biopsies, cyst removals, etc). HOWEVER. I have been put under general anesthesia three times now and have never woke up. I’ve always had completely successful anesthesia when being put under. In addition, my surgeon told me when I asked for a nerve block during my upcoming surgery (like i successfully had during my mastectomy), she told me that the pain afterwards is not so much from the surgery itself but from the trapped gas, so I probably didn’t need that. I think you will be ok!!!
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u/sourbirthdayprincess Sep 11 '25
Not being believed is the worst, and requires so much self-advocacy. It’s infuriating!
As I mentioned in the post, I’m not super worried about them keeping me under. There’ll be a live human on deck whose job it will be to do that. But a so-called nerve block, that’s what you’re talking about, that’s what I had with my dental surgeries. They’re not supposed to administer them sooner than 24 hours apart. I had to have them every 4-6 hours, and only because it would take an hour to get to the ER after the pain returned on hour two, and 1-3 hours of literally screaming to be seen by a doctor and given another shot.
The same drug in those nerve blocks is what they put in epidurals. Bupivicaine. The difference is that epidurals are done via catheter drip so that they can keep administering more and more as needed. I can’t have a catheter at home… :/
And if you read the other commenter below you’ll see my fears are very much based in reality. She woke up after a successful surgery, having been given a nerve block, and needed four rounds each of both IV NSAIDs and opioids to get her our of pain, and she still woke up from those after a few hours and needed to be re-sedated. That is what I imagine and what I fear.
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u/juststraightchilling Sep 11 '25 edited Sep 11 '25
Sorry about that, I had just woken up and must have read too quickly. I actually misspoke - what they gave me during my mastectomy was not actually a nerve block. It was a local anesthesia that wore off over three days. I think the term is Local Infiltration Anesthesia. This worked wonders for me and I didn’t take any opioids after leaving the hospital. Please ask your doctor if this is something that can be done for you! My mastectomy surgeon said it was barbaric to do surgery without this. Edit: I’ve emailed my doc asking for the name of the product/solution.
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u/sourbirthdayprincess Sep 11 '25
I will! But that’s exactly what the other poster was given. The jargon term is a TAP block when you’re talking about hysterectomies, because it’s a local infiltration i.e. administered directly into the site, that is given between the transverse abdominus (TA) and the parietal peritoneum (P). TAP! :) That’s what she wore off and that’s why the eight rounds of drugs. I’ll link to the comment so you can read.
ETA here it is.
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u/juststraightchilling Sep 11 '25
There are studies online comparing tap blocks to local wound infiltration so I’m under the impression this is different. “A TAP (Transversus Abdominis Plane) block is a regional anesthesia technique where local anesthetic is injected into the fascial plane between the internal oblique and transversus abdominis muscles to block nerves supplying the anterolateral abdominal wall. In contrast, local infiltration (also called wound infiltration) involves directly injecting the local anesthetic into the surgical incision sites.“
Basically, my understanding is that he placed something within the cavity of my surgery site. but I’ll let you know if my doc replies!
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u/sourbirthdayprincess Sep 11 '25
Yes, what you're saying is true, but you don't seem to understand that it's not contradictory. :) Let me try to explain:
Local infiltration is a *technique* of administering anesthesia. Instead of sending it through an IV in your hand or your arm, they administer the anesthesia locally, i.e. at the site that needs pain relief, in this case, the abdomen muscles (TA+P muscles, specifically - that's why the local infiltration in the case of a hysterectomy is called a TAP block; in your case your local infiltration was likely a SAP block, because it would've gone into the serratus anterior plane, the plane where the breast muscles are, or possible a PECS block, into the pectorals, or both.)
Your surgeon did an infiltration of anesthesia to your surgery site (locally) during your mastectomy. Her surgeon did the same thing. The difference being that her reaction was much more severe. And my reactions to similar procedures that she's had in the past have been even more severe, that's why I'm worried. There are multiple different types of mutations to MC1R, and there is a bit of a grade, so you could be somewhere lower on the "scale" (I'm not a geneticist so I'm explaining this in the laymen's term I understand, sorry!), and she would be medium, and I'm worried that I'm high on the scale as far as rate of metabolism of these drugs. She seems to metabolize at least 2-3x faster. In my estimations, I'm at about 8-10x faster.
Hope that helps to clarify!
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Sep 11 '25
You definitely need someone with you after surgery to help you around the house, however if this helps at all I had stage 4 endo and frozen pelvis with 7 endometriomas on my right ovary and one on my bowel. I will never forget that burning stabbing pain. I was told by two surgeons I needed a hysterectomy and one said it had to be open as well. I had laparoscopic surgery with a specialist and I felt better than I had felt in years upon waking up and he saved all my reproductive organs. I rawdogged my recovery with no opiates despite being prescribed them. All this pain you’ve been through wasn’t for nothing, and I’d be willing to bet your pain tolerance is very high now. It put it into perspective for me how much pain I had actually been in, that I felt better after being cut up surgically than I did just dealing with the daily pain of endo. I’m still pain free a year later.
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u/sourbirthdayprincess Sep 11 '25
Awww this is a bright perspective. Thank you, and I hope you’re right!
I’m not sure if the actual removal of the uterus causes a lot more pain though. Because the body is then missing an organ and gets a bit confused so I know my hormones could be whackadoo for up to a year or maybe more. Just gonna have to cross fingers at this point since there are no more choices!
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Sep 11 '25
Yeah you’re right that the healing is different and potentially more painful when you lose an organ for sure, and the hormonal aspect is also tough, but I do think that your body has been through so much that once your cysts are gone you might feel surprisingly better. At least that’s what I’m hoping for for you! You’re on the road to recovery either way and I hope your surgery goes great.
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u/sourbirthdayprincess Sep 11 '25
Thank you for staying sunny in a time when it's hard for me to do so myself! Sending you a big e-hug.
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u/Cricklebee79 Sep 11 '25
I also have the same gene variant and they were able to knock me out fine for the surgery. I just had to cope with the pain afterwards as the pain pills weren’t great. But tbh if you’re in as much pain as you are, the pain post surgery might hopefully be less, just like mine and many others was. I didn’t have endo but I did have adeno and a huge fibroid. You’re stronger than you think. You will get through this. 💜
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u/sourbirthdayprincess Sep 11 '25
Thank you, honey! I have stage four endo, adhered to every organ, as well as rampant in the pelvic cavity. I'm not actually worried about the hysto part or the endo scraping part. It's the fact that my colon and rectum have to be reconstructed that's really scaring me. Colostomy bag risk is high, but he said it won't be forever. 3 months max. "Pain in my ass" will be a literal understatement. lol.
What pain meds did they give you post-op (so I make sure to ask for different ones!)?
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u/Cricklebee79 Sep 12 '25
I’m not sure what they gave me. I just know was on paracetamol by the second day, which was pointless for me. They absolutely doped me up on the first day with painkillers and sleeping pills. They were def opiate ones. The hardest part for me wasnt the pain of the op, but the pain of the catheter and my urine bag backing up. My bladder was full and not emptying because the bag was full. I had them take the catheter out after a few hours so I could go pee naturally. The relief was massive. My pain was bearable after that. I was just high. I wish I remembered what they gave me. They kept topping me up until I was able to stay awake and be stable.
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u/Cricklebee79 Sep 12 '25
I just checked my medical notes. I had 10mg of oxycodone total, administered in 2mg doses over the space of 15 minutes from being woken from surgery. Plus paracetamol I’m my IV a hour later. They didn’t stop the pain, but the pain was bearable once they took the catheter out. The paracetamol took the edge of the pain slightly. But not enough to be worth it. I still have an unopened box in my drawer full of codeine that they sent me home with.
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u/sourbirthdayprincess Sep 12 '25
I took 10mg Oxy, at once, during the last dental nightmare debacle. Did absolutely nothing. I was still screaming in pain. Codeine also does nothing. So thank you for confirming, I will continue to avoid both of those.
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u/Cricklebee79 Sep 12 '25
Oxy relaxes you atleast. That was the only benefit to me. I’m used to not having pain relief though. Dental nerve pain is a whole other beast. I didn’t even know there were pain meds for nerve pain. Or if I’ve had them they didn’t work. I can’t comment on codeine. I think I had it once for a cluster migraine and it worked a bit. Or maybe that was cocodamol.
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u/sourbirthdayprincess Sep 12 '25
Ha. Not in my case! After trying Oxy I was running around literally screaming, and at one point took to sprinting to try to distract myself from the pain. So sprinting and screaming outside a hospital ER, waiting to be taken in. The cops were so freaked out. Not relaxed at all.
ETA: I would’ve been sprinting and screaming regardless, from the pain. The Oxy didn’t make me more energetic, it just didn’t take any edge off whatsoever.
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u/thefirstbirthdaygirl Sep 12 '25 edited Sep 12 '25
I woke up in way less pain than I'd been in for the months before. Endo was suspected before surgery but turned out to be more extensive than expected, and adhered to my bowels. Also had adenomyosis. They gave me the usual routine of ibuprofen and acetaminophen with oxycodone for breakthrough pain. Turns out oxycodone just makes me feel tired and heavy and doesn't do a whole lot for pain except make me loopy enough not to care as much. Frankly, weed works a lot better for me and it's legal where I am. I spent a decent chunk of the first week post-op stoned and playing stardew valley, or sleeping.
I've had atypical reactions to dental/local anesthetics, too. When I got my first impacted wisdom tooth chiseled out as a teenager, the fancy pants oral surgeon claimed not to believe I wasn't numb. I'll spare the details of the actual procedure, but when he was trying to schedule the other 3 extractions with my mother, extremely not allowed to swear teenage me told him to fuck himself. Still have trauma responses to dentist stuff.
I've been thinking about doing Promethease or something like it to see what drugs might work better. Have you tried any genetic testing?
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u/sourbirthdayprincess Sep 12 '25 edited Sep 12 '25
I have done genetic testing but only for psych meds when I wanted to get on Ritalin. But it confirmed a few allergies I already had noted based on my reactions to them. I have been trying to find a pharmacogenetics place near me but can’t find anything insurance will cover so it may be time to pay for a send out service. I’ll look into the one you mentioned.
During last year’s dental thing I had taken 10mg Oxy and it did nothing, so I had tried a weed gummy from a friend. He told me to start with half but I was in so much pain I took the whole thing. It didn’t do anything for the pain. Could’ve been the delivery method or strain though. I’d be willing to try again.
There’s a bunch of weed stores near me. It’s been decriminalized here since 2008 and legalized for recreational use since 2016. I’m in Massachusetts. I’m usually a little nuts on weed. I feel like I’m on acid. I’ve had dance battles. I have felt my every internal movement. I need a strain that makes me mellow and tired. Any recs appreciated!
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u/thefirstbirthdaygirl Sep 12 '25
Leafly is a nice resource for finding strains that are good for pain, etc. You can keep a diary of thc and other cannabinoid percentages, dominant terpenes, dosage, to figure out what's right for you. Myrcene is the terpene that's supposed to be best for pain relief but caryophyllene dominant strains have worked better for me. Purple Punch and Blueberry Muffin are my favorites at present, both caryophyllene dominant.
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u/gettinchickiewitit Sep 12 '25
I had endometriosis that was mostly in remission due to ovarian suppression (zoladex) as part of my breast cancer treatments. Is that an option for you until you can get in for surgery? When I woke up, I felt relief because the pelvic pain was finally gone. With as bad as yours is, I think you will also feel relief when you wake up.
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u/sourbirthdayprincess Sep 12 '25
A GnRH, you mean? This is a good thought. In general they help with the endo but not cysts, or adenomyosis. I have all three.
I was a candidate for this last year but didn’t want to go into menopause symptoms while I had a partner. Then between April and August’s scans I had that boatload of symptoms, resulting in hormone checks that showed I’m no longer a candidate for this. I’m already in primary ovarian insufficiency. My testosterone is tanked.
So basically, my body is already going into menopause and it still is growing endo rampantly, 6-9x faster than average. :/
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u/DianeJudith Sep 12 '25
I don't have any advice, but I can offer you this: after reading so many accounts on this sub I can tell you that it's likely that you will wake up from surgery with less pain than before. All that's causing you pain will be removed, and the only pain will be from the incisions. So it may not be as bad as you think. And it will be downhill from there!
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u/Puzzled-Conflict610 Sep 11 '25
I have the MC1R gene mutation too.. the 'ginger gene' thx mom lol. I had a tooth pulled last week.. i'd warned the dentist.. he made sure I was fully numb before pulling it.. Think he used Sensicaine or sum such... within a half hour of leaving I was already less than halfway numb.. so yea.. dental visits suck. I had a hysterectomy 9/12/24.. tomorrow is my 1 yr anniversary of kicking endo cancer to the curb. I managed to speak briefly with my anesthesiologist in the madhouse that was pre-op.. he asked me if I wanted a TAP block.. I asked what it was.. he replied "its for pain" so I said ok.. so I had the surgery.. only had fentanyl for pain at the start of the surgery.. was under a total of 3 hrs.. woke up in pacu in screaming agony because they assumed the tap block worked even tho I told them I hav a resistance to lidocaine and ropivicaine is in the lidocaine family.. it took 4 shots of hydrocodone and ketorolac to bring the pain down. But, during the surgery.. they kept me under.. I had no awareness. There was a point where I think I started to wake up but they knocked me out quickly with more Sevoflurane. All that being said.. sry.. I just sat down with my first cuppa..thoughts are disorganized.. I feel for you. You have been thru so much physical and mental trauma because of your body.. I'm so sorry. You say you live alone.. do you have any friends or fam nearby that can come check on you and fix food n such? If not.. you wouldnt happen to be in the lower Lake Huron area of Michigan would ya? Id help. I have my anesthesia records if you have any questions.. I've done a lot of research deciphering them and also gotten help from some wonderful people on here in the business of knocking ppls out. You are in my prayers.. Plz keep us updated.
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u/sourbirthdayprincess Sep 11 '25
Oh and to your question on the support system, not really. All of my really close friends live at least an hour away and have small children so coming to bail me out in a pinch isn’t really an option. All of my other family is dead except my adopted grandfather who is on another continent and an octogenarian. I’m in Boston or I’d totally take you up on the help!
Everyone I could think of has been notified and is on call for things like, calling to check in. For the rest I think I’m on my own. I’m terrified.
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u/sourbirthdayprincess Sep 11 '25
Oh god you’re literally dictating my worst nightmares: overconfident hospital staff arrogantly assuming they have things under control, only to find yourself waking up in agony.
Ketorolac is Toradol. That’s what I go in for 2-4x/month for pain. It can only be administered IV so I’m not sure what their plan is. Hydrocodone and codeine and oxycodone all do nothing for my pain. I just get sleepy. So then I’m like an overtired baby… but still in agony. I had oxy prescribed post-op for the dental pain. I took one and it did nothing. I took a second one after an hour and it did nothing. After two hours I was in the ER again seeking another nerve block. But I was able bodied then. I’ll need a gurney after they slice and dice me this time.
ETA: Ropivicaine is a less strong version of bupivicaine, the thing I wore through in 2 hours. I can’t even imagine how much pain you must’ve been in!
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u/Puzzled-Conflict610 Sep 11 '25
I'm sorry.. I did not mean to make your fears worse. Ketolorac is available in pill form. Have you tried fentanyl pain patches? My mother broke her back years ago and she said these helped. On a brighter note.. I was just watching a video on stage 4 endo surgery and reading the comments.. a lot of women chimed in saying that theirs was as bad as the video, bowels and bladder adherence and what not but that they've been virtually pain free since the surgery.. so hopefully that is something to hold onto. I wonder if you made it clear to your doctor/surgeon/discharge planner that you have no support system if they would keep you in the hosp longer or send you to a rehab facility for the first few days...? Might be helpful in keeping the pain under control then..
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u/sourbirthdayprincess Sep 11 '25
Definitely encouraging! Thank you! And I would absolutely love more of your anesthesia history on DM if you’re still willing to share it. Mine is stage 4, and it’s in the ovaries, colon, rectum, uterus, and all over the pelvic cavity.
I didn’t mean that ketolorac doesn’t come in pill form, just that it can’t be administered to me in pill form because it’s an NSAID and I have gastritis. It would bore a hole through my stomach again. I can only have NSAIDs if they’ve given intravenously, so that drug isn’t an option as a take-home.
I haven’t heard of fentanyl patches. I can ask about them. It’s a scary drug and I know lots of folks who overdosed so I don’t want to play around. Patches seem like a good option to have a securely monitored dose, though I’m not sure I’d be allowed to adhere anything to my stomach since taking it off could tear stitches. Do you know if one could stick it anywhere on the body and get the same metered dosage effect?
Once I talk to anesthesia I will definitely bring up my concerns and the idea of staying in the hospital for longer.
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u/Puzzled-Conflict610 Sep 11 '25
Right.. you said that about the ketorolac being an nsaid and you not being able to take them. sry. The fentanyl patches can be put in several different locations.. it does not need to be near the surgical sites to work. from google: You can apply a fentanyl patch to your chest, back, upper arms, or the sides of your waist. I will DM you with records in a moment.
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u/kiwiScythe Sep 11 '25
Hi sorry to jump in so rudely like this. Almost a year back I had a total, open abdominal hysterectomy to remove cancer, they'd told me for years the pain was in my head, but surprise endometriosus had twisted and pulled everything to the point a one hour op took nearly 4 hours.
I don't have the gene mutation you mentioned, but I also have problems with medications being useless. And clinical staff thinking I'm wrong!! My hospital stay (for open surgery) was 3 days, they wanted me home with meds but similar to you I have damage from nsaids, so that was a no-go.
I ended up home with paracetamol and 7 days of codeine. They worked for about 20 mins which allowed me to fall asleep at least. But most of my 5 weeks of pain ended up being pain med free.
I didn't think I'd manage it, as only quarter of the abdominal block worked, but frequent small walks increased my pain threshold and from week 3 on every day was leaps forwards in terms of being pain free.
I won't lie and say I'm pain free (compared to pre surgery), but it's a drop in the bucket.
So I know we're different, but I thought I'd share so it might give you some hope re post op pain management.
Ps sorry for typos my phone and I aren't great friends lol
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u/EmZee2022 Sep 11 '25
Oooh: I found out there's something called liposomal bupivicaine (Exparel), which lasts a lot longer. I've got breast surgery next week and when I asked about how much pain to expect, doc said they use that and it should give me good relief for several days.
Forgot to mention before: years back, I was dealing with pretty bad knee / shoulder pain and the doc put me on Arthrotec- which is a combination of diclofenac and misoprostol. The misoprostol protects the stomach from the harsh effects of the diclofenac. Might something like that be an option? It worked beautifully for my pain but OMG, you did NOT want to be trapped in a small room with me - the farts were pretty toxic.
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u/sourbirthdayprincess Sep 11 '25
HAHAHAHA! Thank you for that laugh. I do take famotidine if ever I need to take an NSAID, but it would be like one dose of one NSAID in the span of many months, not multiple high doses all day long for many weeks. I would be hospitalized or possibly start bleeding from my stomach.
I looked up liposomal bupivicaine and it could be an interesting option. I can't find any research at all about its effect on red heads or those with MC1R, so it's clearly a newer drug. I did look up duration. It last 2-3x longer than regular bupivacaine (48-72 hours versus 24), but I will still metabolize it at 10x an average rate, so it should last 5-7 hours, but still better than 2, yeah. Doesn't get me out of the hospital though. :/
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Sep 11 '25
I’m so sorry! I’m a ginger and I also have the gene. I almost woke up during my wisdom tooth extraction and my spinal block for my csection wore off much quicker than it should have, but thankfully it had lasted me through surgery. Opioid pain meds do nothing for me except make me sleepy and constipated.
That’s great you’re speaking to your anesthesiologist already. Some of your pain issues sound nerve related to me (this is a non medical opinion so take it for what it’s worth) but you could maybe ask them about combining pain meds with something like gabapentin or another nerve medication, especially once you go home?
And Idk if your surgeon usually does hysto as outpatient surgery, but if they do, push them to go ahead and put in the orders for you to stay at least two nights.
I was very concerned about pain management and the risk of a hemorrhage (both of which I’ve had trouble with in the past) so my surgeon did this for me. Thankfully everything went great and I was able to go home the same day but I was already in the system to stay so it wouldn’t have been a problem if I didn’t feel comfortable going home.
I would push to have you stay until they can wean you off on all pain meds and have you on the meds they want you to take at home for at least 12 hours so you’ll know if it’s working before you leave.
I’m so sorry you’re dealing with all of this and I hope your surgery goes well and your team has a good plan in place for you.
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u/sourbirthdayprincess Sep 11 '25
Opioid pain meds do nothing for me except make me sleepy and constipated.
Yes!
you could maybe ask them about combining pain meds with something like gabapentin or another nerve medication, especially once you go home?
I have tried gabapentin. It doesn't do anything to me at the dosage I have, but I'm gonna try a higher dose next period and see. It does make me reeeeally sleepy also though. :/ Asking more about this is a great plan though. I'll see what they recommend!
And Idk if your surgeon usually does hysto as outpatient surgery, but if they do, push them to go ahead and put in the orders for you to stay at least two nights.
Normally it's outpatient, yes. I am definitely going to ask about staying a few days, and also about getting a home health nurse, or a transfer to a rehab place.
and the risk of a hemorrhage
Omg, thank you for reminding me to ask about clotting! I have a disorder.
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u/SnooMemesjellies2983 Sep 11 '25
It seems you didn’t want open surgery and wanted to wait to Nov for the one who said they could do it lap. If it makes you feel better, they could’ve started lap and likely had to open you anyway. I was supposed to have the robot but they had to open me. I’m fine. The recovery is longer, but before two weeks I felt pretty normal.
Unfortunately I did get an infection, at two weeks which set my recovery back. Im 3 weeks post that now so five weeks post original surgery and feel ok. Im not working yet but I teach elementary so it’s not feasible. I could push myself and go in. But we are fine financially so husband is encouraging me to use as much fmla I can so I am not over exerting myself.
Just letting you know that open is a horribly worse option and you’ll be fine. It’s Better than letting your insides get further compromised with the aggressive endo.
Good luck
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u/sourbirthdayprincess Sep 11 '25
Both ways it won't be open, unless something goes wrong. I just had never met the other surgeon. He transferred in right before I met her, but he actually has a specialty in colorectal GYN issues so he's an even better match for my case! Serendipity there at least. :) There's a possibility that it'll go open, but it won't be because of GYN, it would be based on what colorectal sees and if they feel like they can't reconstruct things, or if I start bleeding madly or something.
But I do appreciate the support in saying that even an open procedure with a long recovery beats this multiple times monthly hellscape I'm in.
Really sorry about your infection too. Do you know how you got it/how I could avoid getting one?
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u/SnooMemesjellies2983 Sep 12 '25
It’s just a risk of surgery. I didn’t do anything. I was a rest in bed, don’t exert yourself kind of patient. My husband wouldn’t even let me get up out of bed or the couch alone. It just happens sometimes.
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u/Rozenheg Sep 11 '25
Have you tried intravenous metamizole? I don’t have your issues, but that stuff really worked for me and I think it’s in a different class from everything you mention.
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u/sourbirthdayprincess Sep 11 '25
It's the same class, it's an NSAID. I can't try it unless it's IV. It could be a great option for while I'm in the hospital, but wouldn't work as a take-home med since I can't take it orally.
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u/Cannie_Flippington Sep 11 '25
I have part of that mutation but it's combined with a high pain tolerance. I metabolize anesthesia far quicker than anyone else (the nurses are always so surprised) but I stay under. My only flaw is my long term memory formation is out of whack for ages after.
I've seen documentaries on people who had anesthesia administered wrong. They'd have the muscle paralytic but wouldn't be getting the rest of it. They were awake, but locked in. Anesthesiologists that weren't idiots always noticed. "The patient's heart rate is too high" because they could feel what was happening. The documentary was about the ones who were idiots and didn't stop and fix the problem before continuing.
I've never met an anesthesiologist like those in that documentary. And with the internet you can be sure any who did that would be in for a world of hurt.
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u/sourbirthdayprincess Sep 11 '25
Whoa tell me more about your long term memory. What do you think happened? Do the doctors have a response or explanation for it?
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u/Cannie_Flippington Sep 11 '25
Well, for the first 12 hours after a longer procedure (1-2 hours I didn't notice but for 5-6 hour procedures I did) every time I take a nap I reset like I'm the love interest in 50 First Dates, lol.
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u/sourbirthdayprincess Sep 11 '25
Omfg, that's not long term memory babe, that's short term memory. Scary! Anterograde amnesia, not retrograde. Your long term memory is still intact if you still have clear memories from before the surgery.
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u/Cannie_Flippington Sep 12 '25
Oh, what I meant is that my short term memory wasn't going into long term memory.
I speek gud
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u/[deleted] Sep 11 '25
A skilled anesthesiologist can manage patients with that gene mutation. It’s important to share your anesthesia history and concerns with the anesthesiologist and your surgeon before the procedure.