Mar 08, 2015
I've had extreme pain for over a decade, and was a long aggravating journey to find relief. Pain in the girl parts was one of many symptoms, but came on more recently and was one of the most alarming. It started in my 20s and has required two surgeries in as many years. The first one was a partial hysterectomy for painful fibroids. At first the fibroids caused me to skip periods, but then it became heavy periods every two weeks with spotting between. I found out a year later (before the second surgery) that I also had adhesions from endometriosis that were ablated during the operation. The second operation was to remove my ovaries because they both had painful cysts that lifted me out of my chair every time. The adhesions had returned. My surgeon ablated my bladder, ureter, behind my bladder, and the part of my intestines that were stuck to my abdominal wall.
For years I was diagnosed with depression, and misidiagnosed with fibromyalgia and IBS. I had every blood test, xray, ultrasound, and every gastrointestinal test you can think of, including being scoped at both ends... twice. All tests were normal. I was bounced around from doctor to specialist constantly, and saw 2-3 different doctors each month. The doctors had me on every drug they could think of, including fentanyl (a VERY strong narcotic they give to cancer victims). Every time they increased the doses it would help for a few months and I'd "need" an increased dose again. If you're in enough pain you'll do what you think you have to in order to get relief, but it may only prolong the issue. I couldn't work, sleep, or eat, and it affected every part of my life. My entire body was in pain and the list goes on. My hips ached, and I gained a ton of weight. The pain felt like it was deep down in my bones. I had, and still do, have benign tremors. Even worse than the pain was that everyone around me (including my family) thought I was crazy or exaggerating.
All of the women in my immediate family have experienced similar problems. My sister was diagnosed with PCOS, though I never was. I told every doctor about it, and yet it still took years to diagnose. I eventually took myself off of all the pain meds, muscle relaxers, and Lyrica, but kept the wellbutrin for depression. It was surprising to me when my some of my doctors discouraged me from stopping the medication completely, I guess they just liked having the residual income, but I was on a mission to find the cause and the medications only clouded my symptoms with side effects.
Find a doctor that you trust and who listens. Find a doctor who is patient, knowledgeable, and that doesn't just want to treat you with medication. Don't read about everything under the sun on WebMD - you'll just end up driving yourself crazy and everyone around you. Do read, just take everything with a grain of salt and don't obsess... like I did. Most of all, don't give up. Never lose hope. If I had, I would've been on drugs my entire life, never knowing why I had so much pain.
Hopefully you don't need surgery, but my pain has been substantially reduced because of it. I would make the same decision all over again, even though the nerves won't ever be the same after removal of my ovaries. I wish you all the best and hope with all my heart that you find relief from your pain sooner than later. If my story helps one person, then I will have succeeded.