not sure what's wrong with me

[maroonteen]

I've been struggling with some sort of unknown condition for a while now, maybe 3 years? I was having very heavy periods and started having moderate to severe pelvic pain whether or not I was even on my period--it got to the point where I just knew something was wrong because normally I wouldn't even have cramps AT ALL during my periods. And now, I couldn't even go to the bathroom--and when I did, it wasn't intentional. I worked up a lot of courage to go to the doctor with these problems and they brushed me off, just prescribing me ibuprofen. So naturally, I cried on the way home.

A year later, I work up the courage AGAIN because I've moved out and it's time I just be an adult and take things into my own hands again right? They immediately refer me to a gynecologist and book me an ultrasound, which was a relief because that previous doctor had really shattered my confidence in this whole thing. I'm introduced to the concept of endometriosis, and I'm told that if shuffling between birth control pills doesn't help me, I'll be getting the surgery. That was last year.

About 2 weeks ago, I had the surgery. They found NOTHING. (Now the BC did help me lower the pain but it was still daily so I decided that wasn't enough and we needed to figure this out before it possibly got worse.) I woke up from anesthesia and started crying before anyone even told me anything because I just knew. I just had a feeling that it was for nothing. That I really just spent some of my savings to figure nothing out. I met with my gynecologist again, we discuss shuffling me through even more birth control and me getting some pelvic floor therapy--along with another ultrasound. I am horrified at the thought of pelvic floor therapy, probably because I definitely have some unresolved sexual trauma but that's not really the point here.

I'm mostly just tired, if anything. I've been looking for answers for such a long time, I am convinced I've made everything up or I'm just incredibly desensitized to pain. So now I'm just at my parent's house for the winter break. My surgery recovery is going well, it's basically just my cramps from before I had hopped on birth control, but I just feel so nauseous and useless all the time. Whatever this stupid condition is, it's been stopping me from living my life to the fullest. I usually live and breathe the gym but I can never push myself due to the strain it puts on my pelvic region. And now I'm sitting here "recovering" and not being able to go to the gym at all. I can't lift grocery bags or bend down without my parents telling me to watch my stitches. I'm just so upset about everything and I tried to drown myself in work and emails but I just couldn't stop feeling useless.

I'm too depressed to move, as I'm writing this I haven't actually gotten up in probably 10 hours because I'm just afraid to face myself in the mirror right now. I'm not enjoying myself. And I feel like no one really understands my experience right now, because all I've been told is that I shouldn't be getting surgery so young or that someone spreads their condolences by hoping my "scans show up clear" (which is a horrible thing to hope upon someone who wants ANSWERS.) I've tried to talk about this with people, like my mother. The only thing she can say to me is "what do you want me to do about it."

But I think the worst thing for some fucking reason is that when the clock struck 12 on New Years, I didn't get wished a Happy New Year by anyone. It was genuinely one of the roughest years I've had in a long time and I surprised myself by being here to see the next one. I just had hoped someone would've noticed that fight and shared the celebration with me. I read a poem I'd written a week before my surgery and I'd been so hopeful that my problems would be resolved after fighting for so long and I can't help but question if I'll ever figure out what's wrong with me or if I'll ever regain control of my own body. It's like my body has just never been mine.

It's been a while since my life has come crashing down on me this way. I have doctors appointments and work calls and I have to be an adult and take care of myself all on my own. I'm just tired, i'm sad, and I don't think i'm really ready to do it all over again this year. I'm just back at square one and I don't have anyone to guide me through it. I'm very tired of being alone, and I've been rambling endlessly through this summary because I can't stop crying and pausing to keep typing. I'm learning that maybe part of recovery is the emotional aspect and not just the physical. Yes I'm in pain and yes i'm nauseous but I'm also overwhelmed by literally everything. But I just can't afford to take more time off of work or post-pone school.

[Latha]

Hello and happy new year, Maroonteen!

I am so sorry to hear that you are in this awful space. Of course you are overwhelmed and depressed. You're recovering from your surgery, you're unable to do the things that would usually help you feel good, and you are surrounded by people who are being very unsupportive. You've been repeatedly dismissed by both medical professionals and the people around you, and you've been in pain for *years*. This is not okay, and you deserve so much better.

If a procedure or scan hasn't provided an explanation, that doesn't mean that there is nothing wrong. You have not made everything up. Your pain and symptoms speak for themselves, and their existence justifies any support that would help you feel better.

This whole process has been unfair to you, and it is okay to take time to grieve that. If it helps, we recognize your struggle, and we are glad that you are here to see the new year. It is so difficult to navigate the healthcare system as someone with chronic pain, and you've done so well by finding your courage and continuing to advocate yourself in spite of it all. You're welcome to come back to this space for support around your health.

When you feel up to it, you could ask your doctor for a copy of the biopsy results and any video/photos that were taken from your surgery, so you can get a second opinion with another specialist. Even if this isn't endometriosis, it should still be useful to help clarify where your doctors should focus their attention. Your efforts have not been for nothing.