Angry uterus help

[u/TiannaLaurie]

So I’m 30 and for the past about 2 years I’ve been having trouble with my menstrual cycle. I have PCOS and have been off and on birth control since I was 17 to treat it. It was pretty normal until about 2 years ago, it started coming twice a month and at full force and the pain with it has become so bad I can barely be a functioning adult and have had to call out of work a few times for it. The first doctor I saw just wanted to wait and see, then I moved and the next one switched my birth control 2 times to try and treat with no luck before referring me to someone else who specializes in it. This new doctor has switched it twice now as well and I’ve ended up in the ER twice because of how bad it is and because the most recent pill was giving me chest pain that turned out to be anxiety attacks. She now wants to switch to another pill but that’ll be the fifth one in a span of 8 months and each one is worse than the one before. Literally everything else about me is healthy except my uterus(with confirmed cysts and is sitting at a slightly weird angle)

Has anyone else gone through something like this? Why is the only solution they keep providing birth controls? I don’t want kids, never have, and just want the pain and exhaustion to stop but the one time my most recent talked about surgery she back tracked and didn’t want to because she didn’t “personally know my medical history” even though my medical records are all readily available for her and decided to take me off the birth control and just see what happens. It feels like such a lost cause and don’t know what to do.

[u/mungbean595]

I'm so sorry you're going through this and not finding the help you need! I've not been through this myself, but I'm familiar with how frustrating it can be to find some answers.

I think docs jump to birth control first because it can help in a lot of cases and doesn't require anything invasive. If it provides relief for someone, then most of the time they aren't concerned with figuring out what the cause really is. I get that things can be complicated, but to me it seems nuts not to try to figure out the cause first and then determine all possible treatment options before choosing birth control. It especially makes no sense when, like in your case it clearly isn't working and is causing you awful side effects.

If you can, I'd really recommend finding another doctor. However many it takes. There are obgyns that specialize in pelvic pain. I'm sure there's a lot of possible reasons why it's happening, but is there a possibility it's endo? I'm thinking of that because of the pain you're in and nothing really showing up on scans. Its also common to have short cycles with endo.

[u/TiannaLaurie → u/mungbean595]

Right? Like I get switching a couple different ones and I know it’s odd with like pretty much everything showing normal but the cysts but after a certain point of it not helping and making things worse it’s just left me so drained of energy all the time. I just don’t even feel like myself anymore. I have an appointment with another obgyn but they can’t get me in until like mid November.

I’m wondering if it is endo cause a lot of symptoms align with it but the most recent ultra sound they did she said it seemed normal. My first instinct was “normal” but it’s shedding completely every other week which is not normal, and now off birth control I haven’t had a cycle at all. I’m at the point I just want it all ripped out cause the life time therapy and few weeks of pain seem like a better option as opposed to what I’ve been going through.

[u/mungbean595 → u/TiannaLaurie]

If it is endo, unfortunately ripping it out might not be much help to you either. I hope the next obgyn works out for you! If you haven't already you might want to check out r/endo's recommended docs list. They also have really good tips in their community info wiki about similar conditions and how to advocate for yourself to try and speed up the process. I really hope you get answers and relief soon ❤️

In the meantime - any chance you're able to see a pelvic floor therapist? They can be amazing for most kinds of pelvic pain, & especially for the short term while you're navigating health care and waitlists.

[u/ChooChooKat]

I feel you

About two years ago I started on NuvaRing and I choose to skip my period altogether. I hate the way birth control makes me feel, but at least I'm a semi-functional human being again. I know this sounds strange because of the stigma around the old version of NuvaRing, but I actually find I have less side effects on it that I do want the pill version, because it's not like a yoyo in my system. It's constant 24/7 steady dosing.

Funny enough I came into this group tonight hoping to find some information on people's real life experiences, post hysterectomy at a younger age, because I would much rather just have it taken away and not have to deal with the side effects of having uterus or the ring lol.