Tissue damage post excision.

[filous]

Hi. Hope everyone's doing well.

I had an excision in 2020, as I live on Wales I was transferred to North of England as there were no specialist in North Wales at the time. There, I had excision surgery which didn't really help. They said they removed a significant amount from around my bowel, bladder etc.

Following that I had 9 months of Prostap which was a nightmare because I had severe nausea and was completely drained out and had to stop working. I was told to carry on until I had my specialist appointment, hence why it was for 9 months. I kept going because I was convinced a cure was around the corner.

My follow up appointment was by phone and I was basically told that I did not have endo anymore because they took it away and I must have either some other pelvic pain or memory of pain. A hysterectomy would not work because the Prostap didn't work and a needless operation can shorten life expectancy!.

I was told I needed to go to the pain clinic at my local hospital (who had previously told me they can't do anything for me because it was endo and I needed a specialist in that) and was discharged. I was mortified.

My life had been on hold, I was on unpaid sick leave and I was told they couldn't do anything else, and chances were, the pain wasn't even there, my body just thought it was! I thought this is my life now, 43 years old, in debt because of no wages and basically a recluse because pain is so bad. It affected me mentally too, thinking I was weak and imagining the pain. Surely things weren't as black and white as that with endo. I asked them to prove the endo was not there but they refused.

I asked the GP for a second opinion only to be told that I would have to go private.

Thankfully an endo clinic started up locally and I asked my GP for a referral and just to shut me up they referred me. I saw lovely young specialists there who were up to date with information and agreed the endo could have come back and I needed further investigation to see if it was there or not. I had an MRI scan (which the others had refused because it would not show anything) which showed I had tissue damage from the excision and adenomyosis, tissue damage, a cyst and possibly some endo.

The pain clinic have given me a bilateral TAP with radio waves to try and numb the area of pain. While it's helped with stomach discomfort it has not done anything to my lower tummy / pelvic area.

I have been on the pill three months to try and stop my periods because they are horrific and I'm in bed that week with really bad migraines. The new specialist said I needed to improve my quality of life to begin with, try have more good days than bad and hopefully stopping periods will help that. I'm having another review in Dec. She was shocked I was not given traxenamic acid etc to try.

Does anyone have any advice of treatment that has helped them? or anyone been in similar situation. It's been 2 years on sick leave now, while HR is really good, I'm so close to termination of contract. The irony is I work for the NHS! I really don't know what to do next.

Thanks xxx