I have lived with pain and flu since I was a girl. When my second daughter was about six months old in 1982, I got a horrible flu that never went away. There was not ONE doctor who knew what to do or what it was. Not a whole lot has changed.
In 1987, I got pregnant with my son and in ‘88 had my first Dx of EBV, when he was four months old. I also had a Lap that year to see if I had endo causing such pain that I could not sit. It felt like I had been kicked in my bottom every time I was ovulating.
In 1998, I received my first Dx of CFIDS during a bad relapse/flare. In the early 2000’s, a Dx of IBS and FMS was given after bouts of sharp pain in my vag/rectum caused me to pass out before menses began. Osteopenia was found due to the chronic hip/pelvis pain. In June 2006, I had a lap hysterectomy after months of much bleeding and many years of pain. The doctor and I thought this would help.
As soon as the anesthesia wore off, I told the nurses that I had a lot of pain in my left groin and down my left leg. This inner groin pain shoots down to my knee and up towards my heart. The burning, sharp pain on my cervix has not ceased in 20 months.
My whole lower pelvis area aches and hurts when I move. I can no longer stand for long. I walk with a limp and am not able to sit for long without increasing the pain. I had to fight to get pain medication just to function and I hate pharmaceuticals. I also had to fight to get my medical records from the hospital and doctors. I bled a lot during the surgery and afterward was “lost” in the hospital. My children did not know where I was for hours when I should have been in my room.
At one-month post op, a CT showed a hematoma on my cervix and “small spot of air” in the tissue. I have been bounced back and forth and dropped by doctors, and actually for months I had NO doctor. I was my own calling the ins company, asking them what to do next. I also got advice from a great radiologist who located the recto-vag fistula after I requested another full body IV CT. This was now six months post op.
When a rectal CT did not show the fistula, they thought it was possible it wasn’t there. BUT it does show up on the full body intravenous CT! The symptoms of a fistula remain.
I have lost two jobs, now unable to do even the little that I could before the hysterectomy. I’m homebound with pain 24/7. A routine pap made me cry in pain and a colonoscopy made me scream! That doctor wouldn’t stop even though I begged him to. He recommended having my cervix removed and sent me back to the gynecologist who said he wouldn’t do it. He said I was not a good candidate, stating, “the colo-rectal surgeon says you have a treacherous colon.”
My new primary care (np) reviewed all my medical records and sent me back to another colo-rectal surgeon who also doesn’t want to do the surgery. She explained how invasive it would be to do a resection and that I would have to have a colostomy bag while my insides healed. Like the other doctor, she felt I wasn’t a good candidate for surgery, this due to fibromyalgia, possible trapped nerves and possible damage done during the hysterectomy surgery.
I am in the process of trying to get on disability, contemplating a nerve block and still hoping, one day to feel better.