10 years of being ignored, gaslit, and dismissed. Finally diagnosed with Stage 4 Endometriosis, and I still cannot get proper help. I do not know what to do anymore.

[u/phobiabanana]

I have been dealing with this since I was 15. Every doctor I saw dismissed me. I was too young. I needed to lose weight. Nobody took me seriously. Not once.

I struggled with my weight my whole life, which I now know was linked to PMOS. After moving to Canada, my doctor prescribed Mounjaro, which actually helped me reach a healthy BMI and also helped reduce inflammation in my body. Around the same time I finally got a PMOS diagnosis. But the pain and bleeding never stopped.

From November 2024, I bled every single day. Every. Single. Day. I had every endometriosis symptom you can think of. Leg pain, back pain, bloating, extreme fatigue, pain that took over my entire life. I went from doctor to doctor in Ontario and every single one dismissed me. Blood tests normal. Ultrasounds normal. So apparently nothing was wrong. Cool.

I tried birth control. Mirena IUD. Spironolactone, which helped a little with the excessive hair but nothing else. Nothing worked. Eventually they offered laparoscopic surgery as the so called golden solution, but even the day before the procedure they were telling me they were not expecting to find anything. The wait time was over a year. I waited anyway.

In January 2026 I ended up in the ER because the pain was unbearable. They put me on Visanne to stop the bleeding. The side effects were horrible and there is even a risk of bone density loss with long term use. I took it anyway because I had no other choice.

Then I got selected as one of four patients for an earlier surgery slot. May 4th. I said yes without hesitating.

After the surgery my doctor called me and told me they found Stage 4 Endometriosis. She said they were not expecting it to be that advanced at my age. I was not surprised at all. I had been telling doctors for ten years that something was seriously wrong. They just never listened.

They gave me two weeks off to recover. I got worse instead of better. I got a yeast infection and a UTI on top of everything else. The pain came back worse than before surgery. I now have radiating leg pain, lower back pain, hip pain, glute pain, extreme pressure on my bladder, problems with bowel movements, night sweats especially around my neck, brain fog, extreme fatigue, and yellow discharge. I am limping. I walk with a cane now. I cannot drive more than a few minutes. I cannot live a normal life.

Last week I went back to the ER at the same hospital where I had my surgery. I waited 8 to 9 hours. Basic blood tests, normal. Ultrasound only showed adenomyosis. They sent me home with nothing and told me to follow up with my specialist.

Today I saw my specialist. She told me they cannot remove my uterus because I have not had children yet. I am 25 years old and I am being told to have a baby I may not even want just to get proper treatment for my own body. I am in so much pain I cannot enjoy my own life. Why would I bring someone into a life I am barely getting through myself.

I also asked her specifically to order a CA-125 blood test to rule out cancer. She refused. She said the chances of cancer are low. But that is exactly what they said about endometriosis. That is exactly what they said before every single thing they ended up being wrong about. My uterine lining is thicker than normal and nobody has properly explained why. On top of that I have close family members who passed away from cancer. I asked for one blood test and was told no.

She referred me to a GI specialist and a chronic pain specialist. More waiting. More referrals.

I am becoming depressed. I cannot work properly. I cannot go outside. I cannot do the basic things I used to do. I feel like a completely different person. I feel like I am disappearing.

I do not really know what I am looking for by posting this. Maybe just to feel heard by people who actually get it.

[u/Justme_vrouwtje]

Hi, I’m so sorry you’re going through this. It’s a VERY familiar story and there are a lot of overlapping elements with what we all have suffered through. Sadly there is no one way of solving this shitshow, doctors suck, the medical system sucks and people suck. What helped me the most was find my own voice and agency. Don’t take what you are being told at face value, look into every medication they prescribe you and don’t take no for an answer. It’s exhausting and it shouldn’t be like this but I recommend you fall down the rabbit hole, our collective experience is a great guiding post to help take to your medical professionals to ask for tests, medications or alternatives. Know that we are all different so not one persons advice will be a perfect match for what works for you so you need to be critical and sceptical of everything you’re told. Change doctors when you can if someone isn’t helpful, there are good doctors out there! But the shitty truth is it’s work, it’s hard, it’s painful and we get stuck suffering in pain until we find the one medication that works, the lifestyle change that helps, the one test that finally proves them all wrong or the one medical professional that will actually stick up for you and help…. If you have adenomyosis and you have imaging that shows it, and it is what you want, a hysterectomy is a totally normal treatment path, it’s also the only cure so if medical management isn’t what you want or isn’t helping at all, you’ll need to find another doctor that will do it. Sadly there are a lot of shitheads out there that won’t do it for stupid reasons and not think pain and suffering is enough of a reason.

[u/pinsandvinegar]

Please change doctors if you can.

[u/pinupcthulhu]

Can you get to BC? There's an endo clinic there that may be able to help. 

[u/Due_Competition9105]

I don’t know what your financial situation is, and I know that Canadians benefit from cheaper healthcare than our disastrous system in the US, but if you can afford to pay out of pocket, you can probably get a lot of what you are looking for. I’ve read that there are companies in Canada (similar to Labcorps in the US) that will allow you to order certain tests yourself (including CA-125), but that you have to pay out of pocket. I’ve done it here in the US and it was relatively cheap (compared to our healthcare prices), but not sure how it compares in Canada.

The bigger one would be if you could afford to travel here (to the US or perhaps another country) to see an endo specialist for surgery. I actually went with one that was out of network for me because I had similar issues with the jn network doctors. I know for a fact the one I saw here wouldn’t refuse a hysterectomy to someone just because they were 25. It is pretty expensive though, so I understand (and am sorry) if that’s not a realistic option for you right now. Just trying to think of options for you.

[u/Most-Ice-8013]

So sorry this happened to you. Where did they find/removed your stage 4 endometriosis? Looks like they didn't do a good job removing it. Have you had pelvic MRI yet? It will be better used to detect adenomyosis. Your case looks like very complicated, if you live near Toronto, I hear Sunnybrook Health Sciences Centre – Toronto MIGS Centre is the best. Maybe ask your family doctor to refer you there and possibly be put on their waiting list?

[u/celesteslyx]

Did they remove any endo? My symptoms got extremely worse when my first surgeon did a partial ablation even though it was meant to be a full excision if endo was found. Turns out the surgeon wasn’t prepared for stage 4 DIE and couldn’t do it.

I’d see another surgeon. One that is skilled in excision.

[u/rayrayquaza]

So sorry to hear about your situation. Please change to a good Gynae Endometriosis specialist if you can. I also had DIE stage 4 with rectal adhesions. 

I was put on Dienogest-Dimetrum for a year. First month was though- I got the side effects, menopausal symptoms, mood swings, joint pains, migraines. Then it settled on the next months. No more period/ ovulation and all the severe pains that came along with it. It was so worth it! 

After a year, I was scheduled to have surgery for excision. One of the doctors suggested to cancel it and just take the dienogest for life, I said heck no!!! Luckily, the main gyne believed it’s better to have it removed. Main doc was actually very skilled! Now Im pain free. Still on dienogest tho, will probably have to take it to prevent recurrence. I started on Anti inflammatory diet too, as I believe this will help prevent recurrence as well.

All the best to you! Keep advocating for yourself 🙏

[u/Serious_Pralines]

The r/childfree subreddit has a list of doctors willing to do sterilization procedures like hysterectomies. I would recommend looking into it, and trying to get in to see a pain management specialist and a new gynecologist because yours sounds like an asshole. 

Doctors typically respond well to being told the ways your symptoms limit you. So for example, saying, "I cannot drive to work or to the grocery store because it causes pain", would help them understand how you are being impacted. 

I think it can also be good to go in with goals, like being pain free, not having bleeding, etc. 

Good luck, don't lose hope