Sudden acute flare up

[Daughtersendo]

My daughter received a diagnosis of endo 2.5 years ago. 2 years ago we took out loans to pay for her to have private surgery. She had the mirina could fitted at this time. She has been pain free for the past 2 years, however a couple of months ago she started having pains again. Last monday she was exercising and had a sudden pain like something had burst. She has been kn agony for the last 8 days, she has been in hospital due to urine retention but then just discharged with morphine. She cant move by herself she is in so much pain. We dont know where to turn no one seems to want to help her. Any suggestions on what we can do would be really appreciated

[Moonglo]

Hello! That sounds like a burst endometrioma (I had that exact sensation, that something had burst, or like an elastic band snapping, followed by the worst agony I had ever felt). I ended up in A&E. If this happened 8 days ago they probably wouldn’t consider it an emergency anymore, but I’d get it checked out by her GP/hospital consultant x

[JOSANDY40]

Hi, It sounds like she had a cyst that burst! Perhaps twisting a tube or a flare up of Endo. Keep away from food products with Soya in as this contains natural Estrogen which Endo likes, often Chocolate contains Soya! Cut out wheat and gluten as this makes the bowel inflamed. Morphine may help with rest and sleep but generally anti inflammatory pain killers work better. I have found some days Morphine works and others the pain isn't stopped by it. If the pain gets worse over the next few days she may need a scan. Check what time in her cycle is as before a period, in a period and at ovulation pain can be worse. Endo pain can be very painful. Try not to have too many operations, as operation cause more scar tissue but equally sometimes laser surgery has to be done. What kind of drug does your daughter take. I was on Zoladex to stop the Endo growth?

Thanks Joy

[Daughtersendo in reply to JOSANDY40]

Hi shes not on any medication shes not been able to get a referral for a consultant, until now. we have finally managed to get an appointment with an eno specialist centre next week. She has been taking morphine for the past 8 days. The pain seems to be getting better but she keeps having urine retention. Hopefully we will have some answers next week and get a treatment plan. To be honest shes not eaten much of anything in the past 8 days due to nausea and pain!

[mollymm in reply to Daughtersendo]

I couldn’t take morphine because they realised it was making my urine retention worse. Opriates make your body sleepy as well as your brain so if you’re having problems peeing it’ll be harder still because your bits all go to sleep and the muscles don’t contract as they should. Endo damaged my bladder amongst other things (I had a huge endometrioma and my bladder bowel diaphragm and liver were all glued together) and consequently my urethra narrowed so much it was incredibly difficult to pee. Even after several endo surgeries. About 18 months after the last op they did a CT scan and looked at the urethra and realised that it was just too narrow to work properly and it was incredibly painful. I also used to get infected a lot and blood clots in my bladder which were agony to pass. I now have a urethral dilation every couple of years. In terms of meds. During the year when I had all of the endo surgeries they didn’t know why I couldn’t pee but they did notice that any opiates made it worse. Between my first and last endo op they gave me gabapanthen and that made a huge difference and didn’t exacerbate the water retention. I hope she feels better soon and finds out what’s going on. It’s horrible not knowing. X