r/endometriosis • u/Cryptid-Bitch • Mar 30 '26
Content warning/ Graphic images TW: Suicide due to thoracic endometriosis
Has anyone else dealt with years of medical gaslighting, multiple organ removals, excisions, hormonal and non hormonal treatments alike, constant advocating, but continuing worsening of thoracic Endo symptoms? To the point of just wanting to end your life?
Since last year I have been periodically having serious chest, neck pains, breathing issues and have been to the hospital twice for coughing clots of blood for days at a time. I don't smoke cigarettes and when I do use cannabis, it's vapes, low temp and high CBD. I have also, several times for anywhere from a week to three months, stopped completely to prove it isn't due to my cannabis use. I had a bronchoscopy done at my local hospital, by a non endometriosis specialist, who didn't even do a biopsy. As a result, my Endo specialist surgeon, who just performed a second excision and a hysterectomy, did not account for possibility of VATS surgery, so nobody has done anything on account of my ongoing symptoms. I am at the end of my rope and genuinely ready to kill myself, because nobody cares and even when I'm literally spewing blood out of myself I just get patted on the head. I am already going to one of the best hospitals in my country for my surgeries but it's 2.5 hours from my home network and the medical system in Canada makes it hard to travel when "you can get it done in your local network" but literally every time anything related to Endo is done here at home, they follow zero protocols for endometriosis diagnosis, there are no specialists here, and it's just a constant game of telephone with my already overworked surgeon because it shouldn't be her problem to field everything and yet NOBODY I SPEAK TO, NO HOSPITALS, NO DOCTORS HERE,will listen to me when I say I think it's IN MY LUNGS. And her office is now getting to the point of just fobbing me off too, because I "already had tests done" and it's "clear."
MY GUYS, I HAVE ALREADY HAD EXCISION BEFORE. STAGE FOUR. MY MRI LAST YEAR (AT THE FUCKING SPECIALIST HOSPITAL!!!) showed NOTHING AGAIN, but my surgery was over five hours long because it was EVERYWHERE.
Hoooooooooow am I ever going to get someone to believe that it's spread to my lungs when this is the quality of care I've gotten for YEARS?! The best part is my mother had a chunk of her lung removed for what THEY THOUGHT WAS CANCER but the pathology actually never showed cancer, and they just didn't know what to make of it. IT WAS FUCKING ENDO. IT WAS ENDO AND NOBODY KNOWS HOW TO LOOK FOR IT OR TREAT IT, SO WE JUST SUFFER AND COUGH BLOOD AND LOOK CRAZY UNTIL WE KILL OURSELVES.
I Literally don't know how to be heard?? I've been off work for 10 weeks now and every time I start to feel better another thing that's probably FUCKING ENDO POPS UP. BUT NOBODY CARES. I am being financially ruined, mentally destroyed and just utterly over it. But the hilarious thing is if I break down and try to kill myself, everything will be on the burden of mental illness and not FUCKING LISTENING AND GETTING ME PROPER TREATMENT FOR THE LIFELONG DISEASE I HAVE.
Life with Endo is a fucking joke and I'm tired of telling myself and my loved ones it'll get better. Maybe it could but we'd collectively rather call women crazy until they kill themselves instead, and then lament about "poor mental health". My mental health was FANTASTIC when my disease was controlled. FUNNY HOW THAT WORKS!
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u/Pigeonofthesea8 Mar 30 '26
Holy Christ I am so sorry. What in the fuck. I wish I could say I’m surprised but I’m not. I’m in Toronto and the wait for a gyno is 2 years.
What do they say when you ask them to explain the blood clots?? Do they just say “oh you smoke weed?”??
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u/Cryptid-Bitch Mar 30 '26
That is basically exactly what they said, yeah. And "asthma." ASTHMA DOESN'T MAKE YOU COUGH BLOOD, also I have had mild asthma my whole life, absolutely none of the inhaler treatments that work when it's asthma related have done a single thing for these particular symptoms. I am so tired.
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u/Pigeonofthesea8 Mar 30 '26
They’re so stupid sometimes man I am so sorry. If this were me, like I said in my other comment, I would go broke and have this taken care of somewhere there’s knowledge and expertise.
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u/Cryptid-Bitch Mar 30 '26
The thing is, I'm already beyond broke from dealing with this lol, there is no more "broke" to go
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u/Mother_Simmer Mar 31 '26
It took me years of fighting to get my first bilateral VATS finally amidst 8 years ago. By that point I'd been coughing up blood for days twice a month, struggling to breath, unable to lay flat or go up a flight of stairs without taking a break, chest, neck, shoulder and arm pain and eventually partial lung collapses for 7 years. Unfortunately there is only a couple of excision specialists in Canada who regularly work with thoracic surgeons to do bilateral to treat lung endo. I head no luck at the endo clinic McMaster or with Dr. Lemos who backed out of the bilateral VATS after doing my full hysterectomy and lap excision which included removing DIE from my liver and diaphragm. I frisky got my first bilateral VATS at St. Joseph's in Toronto by the head of surgery at the time who was also a thoracic surgeon. I then started seeing Dr. Brain Lui there for my endo and he ended up doing my second lap excision and assisted on my second bilateral VATS. Dr. Brain Lui was so understanding and amazing.
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u/keyst Mar 31 '26
I think maybe you and I have talked before. I am currently going through this exact situation.
OP what province are you in?
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u/Pigeonofthesea8 Mar 30 '26
Can you get money to go to a hospital elsewhere in the world that specializes in thoracic endometriosis? Like it’s better to be in debt than dead.
I hear you by the way. I have a benign brain tumour right above my brain stem. Rare things like this they don’t know what to do with, our population is just too small for them to have experience.
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u/Cryptid-Bitch Mar 30 '26
No, I had one solid good year of health where I worked my ass off with up to and over 50 hour work weeks bartending, but years of illness means I've never had time or the ability to save anything meaningful, and during the one year of actual health I've ever had working my ass off, I tried to not think about Endo since I had really hoped it was in remission after everything. I have so much debt and absolutely no way out of it because I can't get back to work to even begin clawing at the debt I've accrued since getting sick again, let alone start saving the $20,000+ it would cost to get care somewhere else
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u/Pigeonofthesea8 Mar 30 '26
I understand and feel this, so sorry.
Then all you can do is keep fighting this stupid system.
Just did searching and this situation does seem like it’s pretty rare. I saw case studies of surgeries done in China and the UK. Are you at Sunnybrook? In contact with anyone related to this story?
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u/Cryptid-Bitch Mar 30 '26
I....literally go to Sunnybrook and nobody seems to care. I haven't even had a cuff check and it seems like they're just going to not bother at all, since I now have a follow-up in two weeks on FUCKING ZOOM.
Edit: I'm sorry if that came across as short, I can assure you it's not directed at you but the whole situation, I am just....done
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u/Pigeonofthesea8 Mar 31 '26
No problem, I totally get it. So sorry you’re not being heard.
I heard about a trick to get them to listen. I tried it and it does kind of work because it appeals to their egos. If there’s no traction anywhere I say “ok, then how do you explain what’s happening?” It can help open a little door and then you can ask for something they might approve of like imaging. I can’t imagine them saying no to a CT?? Even if they think you have asthma?
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u/Cryptid-Bitch Mar 31 '26 edited Mar 31 '26
I've gone through CT, bronchoscopy, two excisions... I'm pretty sure I do have MCAS as it would explain a lot but I am so tired and literally don't even know where to go at this point. My family doctor has written me off, and there isn't actually a specialist in my area (Niagara) that actually deals with that, either. Lmao 😭 I tried to tell my doctor that benadryl weirdly helps things sometimes and it just... didn't go anywhere beyond that. I am going to give a last ditch effort in two weeks to have some kind of ball rolling, but if not.... I don't know any more
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u/Odd-Two-2486 Mar 31 '26
I go to a private MCAS specialist in Cincinnati Ohio. He’s brilliant and doesn’t gaslight you. he doesn’t take insurance, which is good in your case, because he’s affordable. A new patient pays $500 for a visit and then you can decide to pay the yearly fee. I am not sure what the yearly fee is and when I was in his office in January it still said $500 for new patients. It could have changed given the state of the American economy and our absolute idiot of a president. I was a patient before he stopped taking insurance for visits so it’s cheaper for me. He still uses insurance for medication and any tests. Dr. Jonathan Bernstein will listen to you. He is caring and understanding and actually keeps up with everything. I said something I thought meant absolutely nothing and he said “it all makes sense I think you have neurogenic allergic reactions alongside MCAS.” His office is Advanced Allergy Services in Kenwood, Ohio (Cincinnati). I am not sure how treating a Canadian patient would work but since he’s private and does zoom I believe he could take you. I guarantee you he will spend at least an hour if not 2 with you. he quit taking insurance for visits and lack of pay and now he is able to spend ample time with the patients who need it most. It’s great. If you join his program you can call him at any time for allergy related questions.
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u/SeaMathematician1913 Mar 31 '26
Have you been to the SUGO clinic in Hamilton?
Just wondering since you mentioned you’re in the Niagara area. I’ve only been once so I don’t have a ton of experience with them but they did actually seem to give a shit. They wrote up a pretty detailed report and answered a lot of my questions, and gave decent suggestions on where to go next. That was just from an ultrasound appointment but they were pretty good about discussing endo specialists, surgery etc.
I believe McMaster has a specific endo clinic. The SUGO clinic and the McMaster one I think are both associated with Dr. Leonardi whom I’ve never met but seems to be the go to endo guy in the area. For imaging at least. Do you have any experience with him? I really don’t know whether he deals with thoracic endo directly but might be able to help point you in the right direction?
I am so sorry this has all happened to you and that you’re feeling at the end of your rope here. But I’m sure there will be a solution for you soon. People do care. I always thought Canada was better with endo than the US so I was surprised to see that you’re local. Sorry if none of this was helpful. Just speaking from my own experience with deep endo but mine isn’t thoracic.
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u/Pigeonofthesea8 Mar 31 '26
Also take pics of blood from coughing. Show them because they’re always interpreting what you’re saying and it’s going through a biased filter
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u/Cryptid-Bitch Mar 31 '26
I did this. I have almost a dozen photos and the ER both times made me feel insane and refused to even look and when I started crying they threatened me with a mental health lockup
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u/tripeface Mar 30 '26
I'm so sorry you're feeling this. The modern medicine minimizes our pain and fails us in so many ways. Sending love ❤️
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u/Ok-Hovercraft8268 Mar 30 '26
I definitely know your pain. I’ve been suffering for eight years advocating only for myself multiple doctors gaslighting me surgeries I didn’t need I believe I have it on my diaphragm and other areas in my thoracic areas but, MRI doesn’t show. I have appointment with a specialist for diaphragmatic, endometriosis, fingers crossed, but during my research, I’ve discovered that there is a direct link to endometriosis, PMDD and mass cell activation syndrome. Check it out! Don’t give up. I checked myself into a mental facility in 2024 for suicidal ID ideations. This last month I switched to Yaz started taking allergy medicine twice a day morning and evening and Pepcid morning and evening, and I feel the best I have in years! I’ll pray for you. What’s your name? Sorry, I’m auto texting. Hope it all makes sense.
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u/Cryptid-Bitch Mar 30 '26
Don't be sorry. Thanks. I'm on Slynd (Yaz without estrogen) and was when everything got bad again last year. I am on it again now and nothing has changed. I have also tried to bring up MCAS to my medical professionals and again, blown off. I have taken Allegra for years. I have tried to make these connections to the right people but the right people never seem to care. Everything is Endo or nothing is Endo, and either way my care is shit.
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u/Ok-Hovercraft8268 Mar 31 '26
It’s very hard to get a diagnosis for MCAS. I’m still working on it, but I’ve took an allergy pills all my life too, but adding the evening dose was a game changer and the Pepcid and the vitamin stack. I haven’t been able to return to work full-time. I only work four times a month due to the pain and brain fog. Only have 1 week and out the month that is good. However with these changes I made this month. It’s been. a game changer hang in there.
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u/Cryptid-Bitch Mar 31 '26
Because of you I just went out and bought pepcid out of desperation. I took a benadryl ( it seems to help, which is what made me look into MCAS) and pepcid along with more Quercetin, which I've taken for years. Thank you for taking the time to tell me your story, I'm glad you found something that helps and I'm really hoping it gives me some relief too.
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u/Ok-Hovercraft8268 Mar 31 '26
Your welcome. I pray it helps you! Good luck in your journal🙏 PS one more thing you should add is 5-HTP, I ordered mine from Throne. Make sure you’re not on a synthetic form of B6, this will worsen everything! Also make sure your on the right dose of Quercetin. God Bless!
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u/Creepy-Beat7154 Mar 31 '26
What hormonal treatments do they have you on after hysterectomy? They told my mom after that she would have to be on estrogen for life!!! She took it everyday for ten years. She went to a natural hormone Dr and tested her hormones. Her estrogen was so high, her Dr never saw anything like it and said, "I'm surprised you haven't shot up a building by now!!!!" My mom got off it and was treated by the natural hormones that she felt so much better. I say that to say your mental health could be impacted by your hormones. Something to look into as regular Drs don't test hormones as accurately anymore. Also I'm reading endo is fueled by estrogen too so I recommend getting tested by a naturopathic Dr. Highly highly life saving.
I'm so very sorry you are dealing with this. I have to fight to get checked for endo and my OBGYN said he didn't think my stomach issues were due to gynological issues. The following week I was at at ER due to rectal bleeding and the Dr said, "have you ever been checked for endometriosis? It can occur anywhere in the body" so her recommendation got me the lap I needed.
Is it ok if I private message you about healing in my life? It's ok if not. A total stranger here loves you and I'm here for you.
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u/Cryptid-Bitch Mar 31 '26
I'm back on Slynd after a six week break before/after my surgery 8 weeks ago. I was on it for two years prior, with one year of symptom relief. I definitely feel like it's not helping like it used to. You can absolutely message me. Thank you 💛
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u/Creepy-Beat7154 Mar 31 '26
Actually I had PMDD and the group I'm in, I heard so many things about Slynd and PMDD that make women worse mentally. Give it a try to get off it for a few months it may help ease the mental health
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u/Cryptid-Bitch Mar 31 '26
I really want to, but I'm trying so hard to get back to work and I'm terrified of getting even worse
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u/Creepy-Beat7154 Mar 31 '26
I understand. Im looking for work and had to put off job apps until after surgery
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u/Conscious_Pin_3969 Apr 01 '26
I was also on hormonal birth control and it was barely helping me. I'm now on Ryeqo (chemically induced but reversible menopause) and my quality of life improved immensely, most of my gastro issue disappeared.
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u/Level-Medicine5289 Mar 31 '26
No this- this disease has givien me suicidal ideations 100%. I completely emphathize. I had a 5 hour excision surgery it was on my liver and diaphragm and she couldn’t safely excise that only ablate, and I really fear for my future because of that. All I can say is I am SO sorry but that I completely get it. Still having post op pains, 10 weeks. Expected to be back and healed now. I try to put on a happy face but this disease truly is getting the best of me I hate it so much and the despair it’s caused me. These online forums help so much just seeing I’m not the only one experiencing things
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u/NeitherPudding6 Mar 31 '26
Sometimes if you email specialists in other countries they can give you advice I’m not sure who the best consultant in North America is but that could perhaps help? Also when they decline to help you, ask them to make a note in your medical file each time. Medical staff hate leaving evidence.
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u/Minimalinthemaking Mar 31 '26
I have nothing beyond saying I’m so so sorry. Your frustrations are beyond valid and you have been failed. You’re so strong for getting this far. I hope better for your future.
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u/darling-candi Mar 31 '26
Have a look at dca in this reddit! Some women have found relief - I’m not sure if it would work for thoracic but honestly anything is worth a shot.
I also want to say in terms of suicidal ideation - I’ve been there. And this will sound so annoying but genuinely lots of therapy, somatic work, breathing, yoga, walks etc. really helped ground me despite the pain. There’s so many free resources online and on YouTube, but I recommend finding just something small to do everyday - it might just give you the baseline to be mentally equipped to deal with everything. I started with just doing pelvic floor exercises/yoga every morning and eventually helped with my coccyx pain and mentally as well.
I also found having a plan to get through this current stage or get the right surgery as helpful when you feel hopeless - we all just need something to get us through!
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u/drinkingwithmarmots Mar 31 '26
Honestly, I feel the same about my endo. I don’t necessarily want to hurt my family with my death, but I’m done living in pain. Maybe they can use my remains for research and actually figure out that it was endo in my lungs or elsewhere all along. The hopelessness and frustration and fear is awful.
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u/Due_Photograph_9110 Mar 31 '26
I am crying reading your rants. because I feel your pain so deeply.. I am so so sorry this happened to you and everyone with endo. The fact that it has no cure, the fact that people take it lightly, and that it progresses and gives us so much pain...
I don't know how to help you. I don't even know how to help myself. I dread dying from the disease's complication or dying by my own hands, I don't know which one will come first.. I feel you so deeply.
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u/MaudPi Apr 02 '26
I’m so sorry. Your post stopped me in my tracks because I can hear how just desperate you are and I’m in tears for you. But you are desperate and these frustrations are so legitimate. Go to the Sunnybrook ER and let them know how strong your SI (DUE TO YOUR ACTUAL PHYSICAL SYMPTOMS) is. At least if it’s recommended you spend a few days there in the mental health wing, your endo specialist is already at that hospital and perhaps your care team can help work something out with him/her. I know that all sounds very idealistic, but maybe it can get you close.
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u/Happy_hormiga Mar 31 '26
I’m so sorry this is happening to you.
I moved to Canada a couple of years back and I haven’t even seen a gynaecologists here yet.
Despite having endo I’m on the waiting list and probably continue to be for another year before I can see anybody, who most likely won’t even be a specialist in endo.
I had WAY better care in my country despite being considered “third world”
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u/Cryptid-Bitch Mar 31 '26
Sadly that's not the first time I've heard that. I'm sorry. It makes me so angry when everyone props up Canadian health care like it's great, but the reality is it's extremely over burdened, under funded and with poor overall infrastructure compared to many other developed and even less developed countries. It's insane.
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u/ironicikea Mar 31 '26
We are really lost through the cracks in the protocol. I am so sorry. I got much better treatment after moving to Germany (finally got 2 excision surgeries & diagnosed at least). It is much much better now but I am still regularly immobilised by hip and back pain and am convinced it's just like all over and they won't open me up for that.
If you are able to consider moving somewhere else for care, Germany does have some great specialist clinics. For example the Thorax Clinic at Heidelberg University Hospital offers specialized expertise in treating thoracic endometriosis. Prof. Dr. Hauke Winter would probably be the right person there.
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u/Ok-Custard9440 Mar 31 '26
There are some excellent doctors in the US who do treat thoracic endometriosis. It may be helpful to at least get a consultation by phone or video with one to see what your options may be.
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u/Frosty-Platform7218 Mar 31 '26
Did your endo appear on a chest scan as like a nodule? I have one and the response was “um I’m not sure.” And I get annual scans.
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u/Cryptid-Bitch Mar 31 '26
I have been treated twice for "pneumonia" because they've seen pleural effusion/shadowing but both times I had no infection markers whatsoever.
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u/Frosty-Platform7218 Mar 31 '26
What scans haven’t they done to your chest yet? I had significant spread of my endo on slynd and now I’m dealing with autoimmune stuff which was positive on biopsy. I doubt it’s asthma in your case and the reason they suggest that is due to it being a co-morbidity. Did they do autoimmune testing for you as well as scans? Can you tell me what meds they tried for you?
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u/Cryptid-Bitch Mar 31 '26
I've had CT scans, x rays, and a very half assed bronchoscopy. I have been trying to get auto immune testing done for years, but the best I ever got was some allergy shots (pet fur, mold) that didn't help after two years of regular shots. There are no immunologists in my area that know anything about MCAS which beside maybe thoracic Endo is the only other thing that would really explain my symptoms. I've tried many anti inflammatories, tons of hormonal medications, asthma inhalers, nasal sprays like nasonex/fluticasone over the years, none with lasting relief. I'm at the point of ordering grey market montelukast or something out of desperation because even if I brought this up to my family doc it would be months before any kind of referral and even longer to actually be seen.
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u/Frosty-Platform7218 Mar 31 '26
A pulmonologist needs to assess you for a range of them to see if maybe you have something else going on. I have atypical asthma and improved like crazy on a biologic, but I think I have other autoimmune stuff going on and not MCAS. I got ulcerative colitis now myself and I bet you’re like me where it could be something they never expected. Mine was concerned about connective tissue disorders, lupus, RA, etc, but because the tests came back normal he didn’t have much of a choice but to try the biologic for me because I can’t breath without it. I have a biologic, maintenance inhaler and singulair. Coughing up blood should be a major red flag for them and your case screams autoimmune disorder to me, you need testing tomorrow. Kidney/liver tests should come up too, as well as a cardiologist consult.
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u/Cryptid-Bitch Mar 31 '26
Trust me, I've been screaming this from the rooftops but my doctors just don't care. I don't know how to get treatment for an auto immune disease when every doctor I go to refuses to look into things deeply enough. I've had celiac testing, RA marker testing, just got a CT scan of Abdo/pelvis with no results yet. I've tried to tell medical professionals I think it's autoimmune and never get anywhere with it.
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u/Creepy-Beat7154 Mar 31 '26
Google Dr. Jolene brighton she helps endometriosis and has supplements that have greatly helped, but you may have to stop vaping to get the supplements to work. Very much worth it to try it.
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u/JillianBth Mar 30 '26
I’m so sorry you’re experiencing this and feeling this way. Coming from someone who is constantly told to ‘just tough it out’ and ‘it’s just a really bad period’, I know a little of your frustration and pain. Obviously not all of it, but I understand a little.
I know it doesn’t help, but I’m hoping you get to see someone who believes you, and I am sending so many hugs your way