ENDO Messages for September, 2005: Re: Anyone heard of intestinal endo? (my very recent personal experience with bowel endo)

Re: Anyone heard of intestinal endo? (my very recent personal experience with bowel endo)

From: Sparky (anonymous@obgyn.net)
Thu Sep 22 09:53:01 2005

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In reply to: Erin: "Anyone heard of intestinal endo?"

Hi Erin,

I am one of those people who never knew she had endometriosis until I had bowel symptoms. I had 2-3 painful periods each year and mild cramps at all the others. Nothing ever dramatically alerted me to the fact I had endometriosis until May of 2005. In May, I had period pain that felt like my uterus was exiting my body through my rectum... that got my attention. I also had rectal bleeding a couple of days before my period.

I immediately called my ob/gyn and told her my symptoms. She said to wait one month to see if these symptoms were repeated. I did and it was the same thing only a little more intense. My doctor did a pelvic exam and then sent me for an ultra sound and a colonoscopy. The discovered a growth during the colonoscopy that biopsied to be idnetified as endometriosis.

The doctor who did my colonoscopy has been a gatroenterologist for over 30 years. He said he had seen this kind of growth from endo only three times in 30 years. The statistics I have heard as I explored treatment options seem to bear this out. Only 1% of women who have endo, have endo that penetrates the inner layer of the bowel wall.

I had to undergo a couple of more tests - CT scan of my abdomen and rectal ultrasound (that's exactly how much fun it sounds like it would be). The tests revealed that the growth was about the diameter of a quarter and grown into the bowel wall. On the CT scan, it looks like I have a super thick bowel wall.

All of my resources (except one osteopath... and I think she just has a personal surgery-phobia) say this growth must be removed. I spent time seeking the best doctors for endometriosis in my area and had my first surgery on September 13th. I had a laproscopy to clean up endometrial tissue and to allow the surgeon to get a better look (and pictures) of the colon area. During the procedure, from what I understand so far, the surgeon removed endometrial tissue that bascially fully connected my cervix/uterus to my colon.

I will be having a second surgery to removed the diseased section of the colon. My post-op checkup is today. I will be learning whether my doctor recommends a hysterectomy as well as the bowel resection. I also have some fibroid tumors which factor into that decision. We would do both during the same procedure if necessary.

I have been back at work since since Monday the 19th and I have been feeling very good for the the past three days... good energy with just a little pain that feels like it is in the cervix area. I am surprized at how good I feel.

So, I will see what happens today at my appointment. It should be interesting.

Karen

At Sun, 18 Sep 2005, Erin wrote: >
>Hi~
>First I want to say "thank god" for sites like these! I just found the
>site and while reading the msg. boards for the first time starting
>crying. Finally...someone who understands!!
>
>I was diagnosed with endo only 1 year ago, but have had symptoms for
>almost 3. I've had 3 laps. A cyst removed, appendix and many adhesions
>removed, and now I'm having more severe symptoms. The cramping
>sometimes sends me to my knees, and is almost always present....sure you
>all can relate. I have been constipated, and been having all these
>bowel symptoms. Distention, indigestion, rectal bleeding.....does it
>ever stop???? My doc made me get a colonoscopy last month where they
>found 2 polyps which one was considered "pre-cancerous". I am thinking
>that it is all related to the endo, but I'm not getting any answers. A
>co-workers sister (age 23) just had her entire bladder, and part of her
>colon removed due to endo. She woke up from a diagnostic lap with a
>colostomy and urostomy bag. Can you imagine??? My doc does not seemed
>concerned with the recent symptoms and findings, but I'm really scared.
>I'm currently on 300mg DepoProvera for treatment and hoping to get
>pregnant in the next 6 mo. Anybody have any kind of advice or knowledge
>about intestinal endo? I'll take anything!
>
>Sick of the run-around......Erin

--
Karen in Richfield, MN

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