Endometriosis a strong possibility? Views welcome!

Hello all,
Well here I am again...6 months post hysterectomy (BSO) , but not feeling like I think everyone expects/wants me to...

Pain prior to and during BM's; much like before and now the bladder problems which I and my surgeon believed to be caused by the numerous fibroids, (as well as endometriosis that I had) has become worse..now bleeding in urine every 3 weeks or so, with pain and burning. In addition, pain in left hip/sciatic region has not improved (can you have endo in this area??)

I am now wondering if in fact I might have had endometriosis on my bowel/in or on my my bladder/ureters and that this was never removed because it was never looked at!

I am on tibolone (which is recommended iun the UK for those who have had endometriosis). GP has now recommended I stop this, while I wait to see my gyn (probably in around 6 weeks). I have also been referred to urolology...

Am just expecting to have to 'battle' yet again with the medical people to get them to even check out whether it is endo, as I hear so many say that once you have no ovaries 'anything left will die off'...

I am disappointed and a bit scared to be honest...but I have a supportive husband who I cannot thank enough for putting up with my tiredness and grumpiness when I'm sore...

If anyone has experienced similar, please let me know...Also if anyone has any thoughts on other things these problems could be, I'd be interested to hear...

Many thanks...I didn't think I'd be posting here again about my symptoms...But I am so lucky to have found this place!

Fred1
Age 38

Reading what you wrote is my biggest fear !!! I have endo also and I am scheduled for surgery on June 3rd with a doctor I really trust. He is looking at bringing in another surgeon to assist him since we are concerned about where all the endo has spread. You are in my thoughts and prayers. Us, endo and hyster sisters need to stick together.

Kris

Removing endometriosis from the bowel, bladder, or ureters can be very tricky and not all surgeons have the ability to remove that endo. Endo was left on my bowel wall for that reason. You can also have endo on your sciatic nerve that would be tricky to remove.

Have you gotten a copy of your surgical report? It should tell you where all your doctor looked, even if endo was not removed from all of those areas.

While endo could be causing your current symptoms, there are other health conditions that could be the culprit. Bleeding in my urine that was believed to be endo in my bladder turned out to be interstitial cystitis (IC) instead.

I would suggest working with your GP to rule out any other health issues that might be going on while you also try to see an endo specialist.

I know it can be frustrating to have continued issues following surgery for endo! Been there, done that! While I did have actual endometriosis issues, I also had adhesions and some other medical issues. My doctors and I worked to isolate the symptoms and treat anything that was not endo and/or adhesions first.

Sending you best wishes! in there!

Dear ladies,
Thanks for replying. I did wonder about IC too...will wait and see what the urologist thinks (hopefully he/she will have a good look!).

Even though there are still problems, I don't regret having a hysterectomy, as it really was the only way to stop continual heavy bleeding. (the fibroids couldn't be removed...too many and all over the shop).

I will let you know how it goes in due course...

Take Care
Fred1