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Re: Anyone heard of intestinal endo? (my very recent personal experience with bowel endo) Please read all!!!
From: Alyson (anonymous@obgyn.net)
Fri Oct 7 12:13:05 2005
There is some good info about intestinal endo on EndoZone.com One of the
things they say is that only a very small % of women with bowel issues
associated with endo actually have implants on their intestines. Not
that is doesn't happen, obviously it does, but you can have similar
symptoms without it being physically on your intestines. I think the
gist is that the irritation of your other organs can also irritate the
gastro-intestinal system.
At Fri, 7 Oct 2005, Sarah wrote:
>
>Hi Ladies,
>
>Your posts have really interested me as i am beginning to wonder if i
>have intestinal endo...............2 weeks ago i underwent my 2nd lap
>for endo and was found to have severe endo back on my bladder and
>ovaries! Prior to this i had been off work as the pain was unbearable
>and i really thought that after the lap i'd be pain free and back to
>work BUT i was wrong!! I've been in agony again, its definately bowel
>related as everytime i eat i cramp up and i sometimes get symptoms like
>an upset tummy but the pain literally cripples me!! In conjunction with
>this i have terrible trouble when i have a wee..........it takes ages to
>come out and then when it does the flow is all wrong!!
>
>So what i'd like to know is how do they diagnose intestinal endo? would
>it of been seen in a normal lap? If you've been diagnosed with it can i
>ask what symptoms you get?? I also suffer with terrible bloating and
>sharp, stabbing pains on my left side and when i do have a number 2 it
>kills me!!
>
>Please, please, please help if you can, it would be much appreciated!
>
>Take good care all
>
>--
>Sarah - London
>
>At Thu, 22 Sep 2005, Sparky wrote:
>>
>>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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