Bladder and Bowel pain

[EndoEffect]

Hello all,

I was diagnosed through laparoscopy in October and they excised and ablated the endometriosis patches found. No follow up. They didn’t even see me after surgery. Information of what they had found and done was just on discharge notes. Since surgery I have been having more and more bladder pain. Needing to go to the toilet more desperately and pain linked to how full my bladder is. Same with my bowel. I have a lot of pain before I empty my bowel and then afterwards it seems to ease. I feel frustrated as I thought pain would ease it go away for a while after surgery. And I didn’t have the bladder and bowel pain before. Any ideas or advice? I know I’ll have to make time to go back to my GP soon and discuss it with them or call the hospital and request a follow up appointment. Has anyone experienced anything similar? Thanks x

[chime6]

Hi I get this aswel and had patches of endo ablated on my uteral sacrel ligaments, and pouch of douglas 5 years ago. Unfortunately this did nothing to help if anything the ablation made things worse.

I have since learnt that burning off endo patches in this way is not good practice and other surgeon's who specialise in removal of endo have found women who have had this done have ended up with the areas of the endo becoming worse where the endo infiltrates deeper and also developes scar tissue.

You need to look up acredited endometriosis centres on the BSGE web site. Find one near you that does proper excisional (removes endometriosis at its root) surgery of endometriosis and has a full team of surgeons who specialise in the different areas of the anatomy in the abdomen (the bowels and bladder in your case) . Then tell your doctor you need to be refered to them.

I did this and now I am on a 6 months waiting list for excisional surgery of endo and if they find any on my bowels and or bladder they told me they would have to performe another opperation with a bowel and bladder surgeon.

Hope this helps

Kind regards

Chimene

[EndoEffect in reply to chime6]

Hello Chimene,

I have looked on the BSGE website and I was treated at an accredited endometriosis centre and was treated by a specialist. I would have insisted on only having endo patches excised before my surgery, but I did not know much about endometriosis before then, because I didn’t have the diagnosis. I will insist on this if and when I need surgery again in the future. I’m surprised they didn’t just do excision surgery due to them being an edometriosis centre!

Hayley x

[chime6 in reply to EndoEffect]

Hi

Yes like you I did not know much about endometriosis and the hospital that ablated the endo actually claim to specialise in endometriosis even though later I found out they are not even on the BSGE web site.

The surgeon over looking my opperation put: found small endo areas on pouch of douglas and uteral sacral ligaments but not enough in her opinion to be causing the pain and infertility.

Shocking really as areas of endo on the surface do not necessarily indicate how bad it is and how deep it goes. They also said I must have irritable bowel syndrome and sent me home with some tablets that I stopped taking as I was in more pain.

Unfortunately I also had a fibroid growing into my uterine lining on the left and a retroverted uterus, so even when I did get refered to a BSGE accredited centre they saw the fibroid and retroversion and decided all my pain and infertility was due to these two probs.

Another 3 years on I am told by a fertitlity clinic in the Ukraine when receiving egg donation IVF that I also have adenomyosis the worst kind where it is all around the muscle and uterine lining of the lower part of my uterus. Needless to say I miscarried each attempt at 3 weeks.

I hope you dont have to go through the sort of journey I have had to. I will say this do your research, make sure you know whats best for you, if one specialist endo centre doesnt listen properly or tells you they wont do certain treatments either be assertive with them or insist you be refered to another centre, try to find other womens reviews who have been treated for endo at these places but what got me on the waiting list for excisional surgery was being assertive and knowing my stuff, the specialist even admitted at the time that i seemed to know and understand more than he did.

I wish you all the best and that you get what you need. X