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Endo - What should I do?

I've been dealing with endo symptoms for years. Have repeatedly seen doctors with no results. Long story short, I first had symptoms of severe cramps (to the point of screaming in pain, crying, not being able to move, etc). Meds wouldn't help, if anything I would feel nautious (which I normally feel just taking for a headache). The first gyno I saw put me on Lysteda, a blood thinner, which made everything worse. I then went on birth control.. first Yaz, then Ortho-Tri-Cylcen Hi and Lo, and even Seasonqiue.. all which made everything worse. Aside from the severe pains, my periods became very irregular, very heavy (almost a tampon + pad per hour), and clot-like. Again, every doctor shrugged off Endo. I then began having troubles sleeping, waking up, headaches, weird appetite behaviors, leg numbness, back pain. I felt like a mess, it wasn't just my period week, it was every day giving me troubles. I then began seeing doctors, all of which I got was that I had a pinched nerve in my back and needed to see a chiro. I did, but didn't really help, and periods were still worse. As of late, I found a new gyno and doctor. My gyno gave me a prescription to a higher dose Ibuprofin (which has yet to help with period pains), and my doctor did a bunch of blood work.. only to find I was low on B12. I've been since taking Melatonin to help me sleep and B12 vitamins. I'd say I feel a little better, but all the problems are still there. My gyno also found through an ultrasound I have a hemoradic cyst; however, she said it was very small and even so, would not result in any of the pains, heavy bleeding, and other symptoms I'm having.

Now comes the worst, last Sunday I got my period. I feel like every month I say this period was worse than the last, but this one was horrible. Pains so bad I could not move, could not lay, sit, even stand or walk. I then began to get leg numbness, no appetite. I was ready to go to the ER, but from past experience, they just give pain medicine that doesn't end up working. My period was ridiculously heavy, and clot after clot. I sat on my floor crying and screaming out in pain. Eventually, after a few hours, it went down a bit.

Now this leads to today, I went to my doctor the day after, and he's having me redo my blood work to see if my B12 improved and he wanted to see all my past doctor's notes before taking next steps. I talked to my gyno, and she says it's now pretty obvious I have Endo. However, she says testing wouldn't really be necessary and we could just work on treatments. She mentioned birth control, but I told her all the ones I were on and the negative effects. At our previous appointment, she mentioned Mirena, but I'm just not sure about it. The more I think about it, I'd rather just be tested to find out for sure if I have Endo. Because I have so many other daily symptoms that affect my everyday life, I don't want to go through all these treatments without knowing the 100% cause.

I just need advice, I feel hopeless. I know something's wrong, but it's so frustrating not knowing what.

Sorry for the long back story :)
1 Responses
Avatar universal
Hello there

I'm very sorry you are going through so much, believe me I know exactly how you feel as I'm suffering myself at the moment. In stead of me writing all my story to you i have posted on the ovarian cancer forum. Please don't be scared I have not got cancer and I'm very sure you have not either. I found it helpful as a Doctor usually responds to your posts.

My post is entitled Ovarian Cancer??? Please feel free to read it and we can keep in touch through this forum, if you would like to. Again please don't be scared of the forum, I found it helpful and reassuring.

Best wishes

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