u/phobiabanana

It does not have to be big. A good meal, a warm drink, a person who checked in.

For a long time I kept treating chronic illness like a problem I was going to solve. Like if I found the right doctor or the right medication or the right answer, I would get my old life back. I was waiting to be fixed.

At some point I had to stop waiting.

Accepting that this is a condition I am going to live with, not something I am going to get over, was one of the hardest things I have ever done. It felt like grieving. In a lot of ways it was.

But there was also something that shifted when I stopped fighting the reality of it. Not giving up. Not pretending everything is fine. Just getting honest with myself that this is my life now and figuring out how to actually live it. What helps, what makes things worse, what I need to protect, what I have to let go of.

It is still a process. Some days I handle it better than others. But I stopped waiting to feel like myself again and started figuring out who I am with this.

Has anyone else gone through this? What did acceptance look like for you?

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 I finally got a PMOS diagnosis and started getting some answers. 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. 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.

Nothing I tried worked. Eventually they offered laparoscopic surgery, 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.

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.

I got worse after surgery instead of better. I am limping. I walk with a cane now. I cannot drive more than a few minutes. I cannot live a normal life. And when I went back for help, I was sent home with nothing and told to follow up with my specialist.

When I finally saw her, 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.

More referrals. More waiting.

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.

There are days when I wake up and the pain has already made every decision for me. Not going to the gym. Probably not making it to that thing I said I'd go to. Maybe not even making it to the kitchen without sitting down halfway.

And the hardest part isn't the pain itself. It's having to decide every single morning whether you're going to keep fighting for a better version of this, or just let today be a survival day.

I've had both kinds of days. The ones where I pushed through something small and felt proud of something that would take nobody else any effort. And the ones where showering counted as winning.

Living with chronic illness is exhausting in a way that doesn't show up anywhere. Not in your face, not in your test results, not in the way people see you. You look fine. Your results are normal. But every morning is a negotiation between your body and your life.

If you're in that place right now, what does your morning actually look like?

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.