Endometriosis on the bowel

gerrie

I was told it looked like I had rectal cancer when I was referred to a colo-rectal surgeon for symptons from a mass between my rectum and uterus. As I was having symptoms they didn't biopsy but went straight in to remove the mass. What was going to happen depended on what they found. I had a colo-rectal surgeon and a gyn/oncology surgeon and their teams both in the operating room. When I woke up I found out they were all surpised to find a 6 inch endometriosis mass that had grown into the walls of my rectum. I had my rectum and part of my colon out. They made my a j-pouch from my colon and was able to do it in 1 step. Also had a total hysterectomy and overies out. It was a blessing it wasn't cancer or I pretty much would have been sunk. My colo-rectal surgeon said he only has 2 or 3 cases of endo a year. Very rare. There was no endo found anywhere else. How strange endo works. My recovery has been very good. Sorry I cant help. But my prayers are with you. Did you have your overies out too? They produce estrogen that the endo lives and grows with. Hope all works out for you.

Oscarooni

Hi Gerrie,

Well looks like we are pretty rare cases. Thank God for that.

No they didn't remove my ovaries only my left fallopian tube and my appendix. So now I am worried that this endometriosis thing will grow again somewhere else.

I hope you are feeling better and everything worked out for you.

MFord1206

I have a similar issue. I had gallbladder surgery back in April and my doc found it everywhere...I never knew I had it either. I've always suffered from awful menstrual cramps and pelvic pain, but never had it checked out. My surgeon found endo tissue on my colon, small intestines, bladder and my liver! The doc didn't remove what he found (only took biopsies). Later on I had a CT scan which showed alot of free fluid in my pelvis, I am guessing from the endometriosis. I am now taking Lupron injections every month in hopes to shrink some of the endo tissue. I have had 5 shots now, and honestly don't think it's made much of a difference in my pain. I am seeing my Gyn in a week or so, and am preparing myself for him saying that he wants to operate to remove all of it. I am only 20, and I am hoping that having this doesn't decrease my fertility (not even thinking about having kids now, but in the future). Just wanted to let you know that you're not alone...my case doesn't seem near as extreme as yours though.

Please take care!

Megan

Oscarooni

Hi Megan,

What you have got sounds pretty bad too. The reason the Doctor didn't remove any of it when you had your surgery was because not being a gyno he probably didn't know what it all was. Had he known what it was he might of removed it then and there.

I know my surgeon didn't know what it was that he had removed until he had it tested. He knew it didn't look like cancer but wasn't sure what it was.

You are so young to be having these sort of troubles. Hopefully your gyno wont want you to have a hystorectomy or anything like that just yet.

My period pains were pretty bad when I was about your age but thought nothing of it. Once I got married and had 2 children my period pain disappeared. I hardly knew I had my periods. It wasn't until just recently that I had started to notice some period pain again. I just put it down to being 40+.

I hope everything goes well for you.

da_brown3

Oscarooni,
Hi! I just want to say I had a hysterectomy about eight years ago. I found out the day I had it that I had endometriosis. The surgeon said that I had the worst case he ever saw but it went undiagnosed. I was told by 4 different doctors from the time I was 16 that I would not be able to have children but was never told why. Anyway, I have three beautiful miracle children that I never thought was possible.

I am writing because the doctor told me at the time, that he was unable to get all the endometriosis out. I am now having problems with my bowels and I am afraid that the endometriosis has spread to the bowels. I have severe cramping (which feels worse than when I had my cycles), bloating (to the point that I can only wear sweats), diarrhea, vomitting, dizziness, hungry all the time but I can't eat without being in the bathroom within 20 minutes or less, mucous, and extremely tired. I have trouble getting more than 10 feet from my bathroom and I never know when I will need to go. I work full time (and I haven't been to work in 6 weeks) and I am a full time student.

I am having a really hard time getting the energy to get my homework done when all I want to do is sleep when I am not on the toilet. I am also afraid to leave my house because I'm afraid I will need to go and not have a bathroom to get to. My question to you is, did you have similar symptoms or should I find a new doctor who won't argue with me about having a colonoscopy and a laproscopy done? I want to be able to rule everything out. I want to go back to work and I want to be back to normal. I'm just sick and tired of being sick and tired.

Please Help!
Ann

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Ann Brown

MFord1206

I thought I would post an update about my situation. I saw my GYN and he does think all of my bowel issues may be caused by the endo, since every other test I have done on my stomach and bowels has come back normal. So I am going in for a laparascopy on Dec. 8th

Ann- My symptoms are very similar to yours, the most prominent being the abdominal pain and diarrhea. My GI docs never even thought about my digestive issues being caused by my endo...they thought I had crohn's disease. I am really hoping that my doc will get all of the endo out of there when he does the surgery, and it will help my pain and diarrhea issues!

Megan