ENDO Messages for September, 2006: Re: Bowel Endo? 'Are you out there JOCEE,' ANSWER To this post

Re: Bowel Endo? 'Are you out there JOCEE,' ANSWER To this post

From: Loretta (anonymous@obgyn.net)
Sun Sep 10 02:08:52 2006

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At Fri, 25 Aug 2006, Katie wrote: >
>I haven't seen Jocee post here, but I'm pretty certain that Jocee is the
>same lady who moderates a Yahoo Endo support group called "Endo
>Sisterhood". I am a member of that group as well. You may want to join
>that group and try to contact her that way. Just a suggestion.
>
>I, too, have some of the same problems you write about. I had a TAH in
>January, 2006 ... my uterus, also, was left behind as it was "cemented"
>to my bowels. I wish I had the answer to your pain...but at least you
>know you are not alone!
>
>Good luck in reaching Jocee...hopefully she has more information for
>you.
>
>At Thu, 24 Aug 2006, Wendy wrote:
>>
>>Thank you for letting me know about that, Pamela. I'll look at the
>>archived messages from JoCee.
>>
>>At Wed, 23 Aug 2006, PAMELA wrote:
>>>
>>>Wendy,
>>>
>>>I know there was someone by the name of JoCee that has first hand
>>>experience on bowel endometriosis. She has not posted on this website
>>>in a while though. She has pretty bad extensive bowel endometriosis.
>>>Hopefully she will see this & post back to you with her insight on this
>>>& if it sounds like bowel endo. Just an FYI for you. Sorry I could not
>>>be of more help.
>>>
>>>--
>>>Pamela
>>>
>>>At Wed, 23 Aug 2006, Wendy wrote:
>>>>
>>>>Oh my God! I have the same issues (tapered, mucus) and constipation
>>>>(occasional bleeding as well) and I've had total hysterectomy too. I've
>>>>had the same worries you've had also. I have a lap scheduled Sept 12th
>>>>(with possible laparotomy), so I'll tell you what they find out. I wish
>>>>I could give you an answer sooner. My guess is that it could be either.
>>>>I put off finding out which for as long as I could for that reason--I
>>>>was too scared. Hang in there.
>>>>
>>>>At Tue, 22 Aug 2006, anonymous@obgyn.net wrote:
>>>>>
>>>>>In May of 2004 I had a total hysterectomy and appendectomy because my
>>>>>endo was so severe that my uterus was attached to my bowel and had
>>>>>twisted my left ovary totally around and also attached that to my bowel.
>>>>>I was doing fine for about 2 years. The hormone patches are a Godsend,
>>>>>keeping menopause at bay. But as of this writing I feel horrible. I
>>>>>have no energy. No sex drive. Small amounts of gas that leak right at
>>>>>my rectum. I've had bowels movements that often appear tapered and have
>>>>>a mucus-like film on them. Although right now they appear normal. Just
>>>>>a little constipation. I've had so many recurring UTI's since my
>>>>>sugery, I'm sick of it - mostly after sex. I have headaches. I'm sick
>>>>>to my stomach on and off. And have a general feeling of having a lot of
>>>>>caffiene in my system. I haven't gone to see my doctor yet because I
>>>>>feel like a hypocondriac. I'm thinking one of two things. 1. my endo
>>>>>has speard throughout my lower bowel. 2. I have rectal cancer. I'm
>>>>>scared to death. Any ideas or suggestions? Does endo behave in this
>>>>>manner?
>>>>>
>>>>>At Sat, 16 Apr 2005, Karen wrote:
>>>>>>
>>>>>>At Thu, 14 Apr 2005, H. wrote:
>>>>>>Has anyone had bowel endo to the point of anal bleeding and blood/tissue
>>>>>>in stools? What procedures have you had to go through? Is it worth
>>>>>>getting treatment, if you're not in major pain?
>>>>>>
>>>>>>Yes, I did have cyclical rectal bleeding with my endo. it was diagnosed
>>>>>>with a colonoscopy. The portion of bowel that was affected was in the
>>>>>>recto sigmoid portion lower down and closer to the anus. I had severe
>>>>>>pain and pressure there most of the time and especially at that time of
>>>>>>the month. All of this progessed after I had a sub total hysterectomy,
>>>>>>which at the time my doctor reported no visible endo. One year later I
>>>>>>had to have one ovary removed due to endo and now I am 7 weeks post op
>>>>>>from my third surgery where I had everything else removed (cervix, other
>>>>>>ovary). I had my endo excised and a bowel resection. the endo also had
>>>>>>grown into my vagina which required me to have a small area at the top
>>>>>>of my vagina cut out. So far I am feeling WAY better. I don't have
>>>>>>that horrible endo pain I was experiencing before my surgery and no more
>>>>>>bleeding!!!! I am however not without my problems. Because the endo was
>>>>>>so extensive in the lower pelvis, nerves that stimulate to bladder to
>>>>>>empty had to be cut. I am having bladder retention issues and I am self
>>>>>>catherizing in order to empty my bladder. I am told the bladder is the
>>>>>>most forgiving organ in the body and that the nerves will regenerate but
>>>>>>is a matter of time....patience is a virtue.
>>>>>>
>>>>>>If you have any other questions I would be happy to answer them. YOu
>>>>>>can send me a private email if you prefer.
>>>>>>
>>>>>>--
>>>>>>Karen
>>>>>>
>>>>>>--
>>>>>>STAH in 2002 for adenomyosis and heavy painful periods.
>>>>>>Lt ovary removal in 2003 due to endometriosis
>>>>>>3rd surgery Feb 28, 2005 to remove severe vaginal and rectosigmoid endometriosis.
>>>>>>

-- Hello.

I heard from one of the lady's on my site that someone had been looking for JoCee and that she may be the mod of a support forum called, the Endosisterhood. Also that she was being looked for to ask her about her bowel endo.

If I may have recieved not accurate info, I apoligize, but I came to post this in responce to hearing of that post.

My name is Loretta and I used to post here awhile back with JoCee, sometimes our posts and identites have gotten mixed up. I am the moderator of the Endosisterhood. JoCee and I maintain that Endo support forum together. JoCee does not have bowel endo,that would be me. I have had endo since I was a young teen,I have stage 4 endo,extensive and very severe with extensive and calcified adhesions to my bowel and intestines. I also have loop obstructions, (partial), in the intestine,as well as frozen abdomin from the adhesions attaching to most every pelvic organ and pulling them into a "wasp nest" thus stopping all natural movement of those organs. I suffer secondary infertility, and have had 13 ab surgeries, I have also had many other unfortunate outcomes b/c of those surgeries.

I now co-manage a Endo support group called the Endosisterhood on YAHOO! groups where I offer my support to others facing theri journey's with Endo, and all the things that come with it. My past posts are in these archives if you are interested in reading further.

My Bowel Symptoms was posted April 23/06 and "All about my poop, To Steph Luv Loretta", was posted March 31/06. These ones talk specificaly of my bowel/intestinal symptoms.

If you would like to talk to me further don't hesitate to write me at my personal email address, I am always available to offer any help I can.

Health"n"Healing to you, Sincerly,

Loretta. Forum Moderator and SupportWorker EndoSisterhood@yahoogroups.com

P.S, If it was JoCee you were specifically looking for, again, write me and I can put you in touch with her.

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