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Anyone else out there that has sigmoidocele,rectocele,perineal descent?

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Posted 11/27/2012 11:27 PM (GMT 0)

 

Hello there,


My name is Heather and I'm 29 years old. I was wondering if anybody had any advice for me in regards to my medical enigma. Sorry if this is a little long I'm desperate for any suggestions!


I've been extremely sick for 3 years straight now. It's been emotionally physically mentally exhausting. My symptoms are: extreme stomach distention, horrible pain in lower abdomen, a sensation that my intestines are being squished, another sensation in which it feels like there is nothing to hold in my lower abdominal organs in place (feels like there is no barrier or netting) and I can feel what I think it my intestines and such pushing against my abdominal wall and insane pressure with that, along with pelvic pressure and pain, as well as nausea, lack of appetite, lower back pain, stomach feels extremely heavy, constipated at times, and even when I'm not I still feel constipated and trapped gas. Symptoms are everyday and it's much worse when I get my period.


The surgeries I've had are appendix and gallbladder removed, liposuction, and exploratory surgery to check for adhesions which they found nothing.


I don't meet the requirements of IBS, My blood work has been fine, x rays and 2 CT Scans that showed I was constipated and a redundant colon was noted. I had the smart pill test and gastric emptying test all were within normal ranger. Anorectal Manmetory normal too. My SITZ marker test - all 24 rings had passed but on the last x ray of the test it showed I was constipated in the sigmoid colon.


Which brings me to a defecography I had done at the Cleveland Clinic in Ohio - which is the only thing that showed anything. My surgeon first looked at one of my films and told me I had a Grade 3: descent of my redundant sigmoid colon into pelvis. She stated it wasn't bad and she's seen Grades up to 6? She said she wanted to take another look and would call me.


When I received her phone call she said she completely disagreed with what the radiologist reported. She offered me a temporary illeostomy bag to help with pain or I could do mind over matter? This didn't make any sense to me.


I didn't feel right about the whole thing so I called the Clinic and requested the actual report from the radiologist. I received it the other day and to my surprise in the findings and impressions it said;

Findings and Impressions read:

 

1) 50 % residual after evacuation

2) Large Rectocele - 4 cm

3) Rectal Intussuspection: Intra-Rectal

4) Perinal Descent - from 6.4 cm below to 7.5 cm below the pubococcygeal line. (how bad is this?)

5) Sigmoidocele - Grade 3


I also want to note my surgeon DIDNT give me the barium swallow to test me for enterocele! Upset after traveling miles and going through all that.


I was extremely surprised since my surgeon didn't tell me all of this and I can't believe she offered me an illostomy bag? And I don't get how she totally disagreed with the radiologist!!!! I'm upset and confused. Has anyone had this? How can I be tested for Entrocele without a repeat defecography? Are there any other tests? Can these be fixed? Especially perineal descent? Which type of surgeon corrects this? Pelvic or Colon surgeron? Any recommendations on who to see?


I'm a power lifter/bodybuilder and I've been telling many doctors and surgeons I've lifted heavy amount of weights. They kept telling me I had body image issues, blamed in on my past eating disorders, and told me it was in my head. I lifted 14 plates of 45lbs on a leg press on a weekly basis - I'm assuming I've ripped the fascia. Sadly, I didn't know any better.

 

Thank you for listening, it means the world.

 

Heather

Posted 11/28/2012 1:45 AM (GMT 0)
Hi Heather and welcome to the chronic pain forum. It looks like you may very well have some issues going on. I know nothing about any of the conditions listed on the xray report. Please note that none of us are drs here at the forum, we just speak from personal experiences only.

The questions you are asking need to be directed to a dr who is experienced in all of the above. I would get myself a 2nd opinion with another surgeon and take it from there. Sometimes a fresh set of eyes helps and can make all the difference in the world. Don't limit yourself to one opinion only.You should see another colo/rectal surgeon, plus a good gi dr.

The next thing I would do is a google search on the findings on the xray and read what it says about each one. Stay with sites like WebMd or the Mayo Clinic, either one is very reputable. The more you can learn about your health the better off you will be. Learning about this will help you communicate better with your dr too.

Take care.....Susie
Posted 11/28/2012 7:03 AM (GMT 0)
i've been thru 17 surgeries and the majority in my abdominal, pelvic, intestinal region. i have mesh upon mesh overlapped so much that has cause me so much problem. Enterocele, Rectocele several x's and currently have a horrible rectocele now. Had my colon tear thru vaginal wall, with colon, bladder and vagina falling out of body. i have massive pelvic trauma/dysfunction and unbearable pain that i feel like i won't make it another 5 minutes. On top of all that i had an ileostomy a year ago. i've had every test possible and most of the time they didn't show the cause of my problems until the damage was done. This is just a couple of my probs.

My advice is don't give up and keep searching for the Dr that you feel gives you all the info and answers that you feel your looking for. i am not a Dr either so each of us has our individual problems, so i definitely agree with the moderator on seeing the professionals. Much of luck 2 you.
Posted 11/28/2012 6:11 PM (GMT 0)
I end up advising people to seek out sports medicine doctors a lot, especially for ortho or joints that were damaged by football or long time heavy work or those types of things. But I really think, in this case, if you can find someone who specialized in sports medicine, they may have seen this type of injury before, or at least know how to get you to the correct treatment with a proper diagnosis.

You may need a referral from your primary doctor or gynecologist, and this is my opinion as a layman, but it certainly sounds like a sports related injury. This may be one type of physician you want to add to your arsenal.

Your average general or internal surgeon does not know how a highly trained body can differ from a pudgy body like mine, since he sees so many of me, or your basic skinny person with little to no muscle tone. Muscles heal differently, tendons are different, fascias between parts are stretched thinner more often, which can cause problems during surgery, all of which can add up to having a sports medicine doctor even scrubbing in while a regular surgeon does the work to make sure certain things are being done properly for a trained body.

Of course, this is just general advice. While I do have interest in the female pelvis.... It's of no real use here on this site. :)
Posted 12/16/2015 10:38 PM (GMT 0)
I know this post is really old, but I was just wondering if you ever found the root of your problem. I'm considering going to the Cleveland Clinic for exactly the same things. Wondering how you're doing.
Posted 12/17/2015 6:03 AM (GMT 0)
Hi maryc & welcome to Healing Well. I wanted to let you know that the above posters are no longer active here at Healing Well. The original poster has not been back since her post above & the others its been a couple of years since they posted here. I have heard many good things about the Cleveland Clinic in the past. I think it really depends on the individual.

I will lock this thread so no one else will post on this thread. You may want to check out the some of our other forums here at HW such as the IBS forum & ask some questions over there. I hope you can get some answers.
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