Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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endo pain management and wrong diagonsis

cleung
cleung
I have been in pain for 5 years now. Over the 5 years I have been diagnosed to have Intitestial Cystitis and IBS, but no medication can stop my pain. Finally I saw this gyno and the MRI shows that I have endometrium on my bladder. I went for a surgery, and the gyno found that the endometrium are everywhere, they are on my bowel, my rectum, kidney, and ovaries. So he just left it be and sent me to another doctor.

Does endometrosis that severe cause painful bladder and bowel problem? I am having my first period after my surgery, I am scared because my bleeding is heavy, just like always though, but I am in so much pain it is not funny :(
SSWarning
SSWarning
Absolutely! Your bowel problems most likely are coming from the endo on you bowel and rectum. The bladder pain may be adenomyosis. ( endo growing inside the uterus ) I was misdiagnosed with IC. The symptoms didn't add up so I started seeing a specialist and he told me that it most likely is adeno. I've heard of many women getting an IBS diagnoses and then it turned out to be endo growing on the bowel. They both can have the same symptoms.
Are you going to look into surgery to have the endo somewhat removed? Do your homework on what ever doctor you choose. Try and find a specialist or someone that performs excision surgery as apposed to laser. It has a longer recovery time but can keep it at bay alot longer.
Good Luck!! If you have anymore questions, don't hesitate to ask. Everyone here is very helpful and supportive and have been through it all!! We have alot of advise to give!

Stay Gold and welcome to the group!
thatotherchick
thatotherchick
hi welcome to the group! i totally agree with everything sswarning said in the above post. only the bladder pain may be endo and scar tissue attaching your bladder to your uterus...as mine was. ouch! not that adeno can't be causing that too, it very well could be...just thought i'd add my experience too! hugs~jen
Christine1976
Christine1976
I have endo on my ureters and urethra...I constantly feel like I have a bladder infection/UTI though I never do!
cleung
cleung
Thanks you all your advice. I have never heard of adenomyosis, definitely need to look into it more. The specialist I am going to see is a specialist very experience in doing endometrial ablation.

Thanks again, I am glad I found this site.
honor435
honor435
christine, you should have that endo removed from your ureter, my doc said if it got bad enough I could lose a kidney!
Christine1976
Christine1976
Right now the risk of damage in removing it is greater than the symptoms. I won't have it removed until that changes.
honor435
honor435
It is a tricky surgery for sure, i understand.
Christine1976
Christine1976
Right now I just have lots of specks of endo on ureters and urethra. For me it's more the inflamation from it that gives me problems...since those tubes are so small. But the specks would be so hard to remove.