Dear Fellow Endo Warriors,
I'm reaching out to ask about pain relief and help with debilitating bowel issues. Is anyone else post-hysterectomy and Endo adhesions still compromising your life? If so, I really need your help xx
Here's my story ...
I had a complete hysterectomy and ovaries removed about 13 years ago (age 36) due to stage 4 endometriosis which resulted in a frozen pelvis and extensive bowel damage.
After a long history of botched operations, I found an amazing surgeon who worked with 2 bowel surgeons and a vascular surgeon to free me from pain for the first time in 18 years. The endometriosis was also found in my kidneys and liver. I suffer from very high blood pressure (family trait), so could not go on HRT.
My surgery involved a complete hysterectomy and both ovaries removed. I had 8 years relief, but the pain has come back with a vengeance.
For the last 4 years, I've been suffering with bowel problems - excruciating daily pain, sudden onset diarrhoea, constipation and bleeding from my back passage.
I was sent for MRI scans which showed significant narrowing in my colon, so I had to go for a sigmoidoscopy/biopsies The narrowing of my colon meant that the camera could not go up there. Due to Covid, the only telephone advice my consultant told me was to take daily laxatives.
Sadly, the sigmoidoscopy left me with a severe infection and multiple antibiotics to clear and 5 weeks off work.
As Covid has progressed, so have the infections. I have been treated for 'diverticulitis' with multiple courses of antibiotics (2 weeks each time) every time I have a massive flare up (crippling pain, high temp, bleeding, high heart rate).
I have been back to see my consultant and he has told me that there are no surgical options available. Operating on a 'Frozen Pelvis' once was a major feat, they would never try again. I asked about pain relief and he said he would refer me to their pain clinic. I told him that I'd already been to a pain clinic, and they said there's nothing they can do as it's a structural problem.
He suggested I went for an enema scan to see how blocked it is. Ever since, I've been in excruciating pain, I can't drive as there's no chance of me doing an emergency stop, and I'm edging on incontinence (losing control of my bowel about 3 days per week).
It's six weeks later and still no response. My company want us to go back to work now Boris is lifting restrictions. It's completely impossible for me to do.
Any advice/help would be appreciated as I don't know what way to turn at the moment.
Lots of love to you all,