- 2 years ago
Warning! Too Much Information and slightly ecky.
I was officially diagnosed with endometriosis and andometrious last spring. I suffered from it since I was 16 which I am 32 and by the time I saw a specialist and got my diagnosis, the damage to my uterine muscles was so bad that it was visible via ultrasound to the naked eye. She is the leading surgeon on this coast so I mean, to her naked eye, but still.
At that point my only options where a laparoscopy and severing the nerves to help with pain or to do a partial hysterectomy + laparoscopy to remove the endometrial tissue. I opted for the partial hysterectomy due to the uterine damage and that being the only way to get rid of andometrious. Hysterectomies don’t really help with endometriosis but the laparoscopic removal of the endo tissues should fix it, which she had an 80% success rate. So I was hopeful and at that point, it was so bad that I was on more pain killers then a rock star in the 80s and couldn’t continue on that way.
Well the surgery was a success, though they ended up taking my appendix also due to tissue damage from the endometrial growth.
Fast forward to now, I am almost at my year mark but still in pain, except this go around it is nerve pain. I had a nerve pain before surgery, which maybe the other type of pain overshadowed it, who knows, but now it’s daily. My medication intake is way less but I had hoped I would be off of it entirely and able to be pain free. My PCP has been seeing me every month since the surgery to monitor progress and just recently she told me that I shouldn’t have the expectation of pain free and the best I could hope for is maybe getting it down to 70% less then it is now.
This is gonna sound dumb but I don’t want to be a chronic pain patient. I mean obviously not, but it is really getting to me that I am 32 and this is my life. I am in physical therapy because I have pelvic tension due to the constant pain over the years, which has been slow going. Then I am also on an antimflamtory diet to help with bloating since the two things that make the nerve pain worse is bloating and being tense.
Fiance has been my rock through all of this but everyone else I knew bailed due to my illness and some other life stuff that I don’t have control of. I don’t expect anyone to want to hang out with me and watch parks and rec for the 100th time. All I do at this point is PT, study, work, and watch silly stuff on TV. We travel a little but this pretty much ate my life and who I was, I just want be normal agian. In the last 4 years it feels like our sex life went from woo hoo! to noexisiting and half the time I’m wonder what my amazing sees in me anymore…
So anyone else dealing with this? How do you people? Do you still have close friends? How is you partner dealing?
Sorry ahead of time for the typos and grammatical errors, I am tired, dyslexic, and in pain.