# Scared...any advice and kind words appreciated!



## caputsky (Jan 21, 2009)

Hi, I will try and keep this as short as possible, as I already appreciate anyone taking the time to read this post. Basically, I have been diagnosed with IBS for a little over 4 years. I have had every test under the sun done, including 3 colonoscopies. And when I tell this to every doctor now, they look at me like I'm crazy since I am only 27 years old. My IBS has never really gone away in these 4 years, just has varied in the severity of symptoms. Mostly, I have diarrhea, pain, and gas. About 8 months ago, I noticed that when I went to the bathroom and had to strain at all, it would feel like something from inside me was coming out. After several months of trying to get a referal, I had an appointment with a Colon/Rectal Surgeon. She thought I had rectal prolapse, so I had two more tests done, one of which I wouldn't wish on my worst enemy. Anyway, I just had my follow-up appointment with her yesterday. She told me that, based on the results of the tests, not only did I have rectal prolapse, but also that part of my vagina was prolapsing, as well as my lower colon. She also told me surgery was the only option. And I have to go to a urogynocologist about the vaginal prolapse (I believe its called a rectocele). Needless to say, I'm really overwhelmed and don't even know where to start. I can't believe that this is happening to me -- I have done some research and both of these conditions mainly happen to women who have had surgery previously, have had children, or have had a hysterectomy. I have had none of these done, nor an I overweight. I know that I have the rectal prolapse, because I experience the physical evidence myself. But I haven't noticed any major issues in the vaginal area. I really don't want to get surgery for that because I have read about horror stories about how it has made things worse for those who have. I know this is a fairly rare condition, but I figured it was worth a shot to post my query on these boards. If you have any experience or know anything about this sort of thing and wouldn't mind responding, I would so greatly appreciate it. I feel like I can't talk to many people who I am close to because of the nature of the topic. But people on these boards have always been so supportive and non-judgemental. So thank you in advance for any thoughts or words you have. I wish you all a healthy, IBS-free weekend.Thanks again,Julie


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## BQ (May 22, 2000)

IMHO... if you are doubting ANYthing>>> _ever_... get a second opinion. Get copies of the reports of the tests you have already had done, copies of films or videos that were taken etc... and get them IN your possessioin and bring it to someone else for another look and see what they say.


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## TanaG (Jul 11, 2009)

I agree. First of all get a second opinion. It is always good. Second of all do speak with a gynaecologist about the vaginal prolapse. It is possible there are ways you could avoid surgery for years if the prolapse is not that bad. I don't know anything about the surgery stuff of course....but I know my mum has operated on a few women (she's a gyno) and they're doing fine as far as I know. I know this might sound silly but I know small puppies sometimes have rectal prolapse and it goes away in time.... which makes me think it might be reversible...can;t they think of something they might help you for some time to see if things get better? I mean ...it is easy to just recommend surgery...Best of luck!Rux


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## koffeloverkris (Dec 5, 2009)

If it helps, you are not alone. I was having BM issues since age 7 and last winter at age 37 I saw my GYN because I felt actual physical changed down there and I was right. I have vaginal prolapse, but they didn't tell me that it needed correcting, so I still use a gloved hand when I eliminate to put counter pressure inside my vagina especially when I have constipation, it works for me. I have only had one child, with a forcep delivery at age 25, and I have never had rectal or female reproductive surgery of any sort, so I have no idea why I have the prolapse either. one doc said it was from child birth ... whatever.....I take so many meds, I am not sure I want to list them all. The newest was ALIGN, it helped me become more regular, but its not cheap. Email me if you want to share notes, or need to talk. I am short on time right now, but I am here. Just joined this group because of your post!! Stumbled upon it researching a new digestive probiotic.


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## caputsky (Jan 21, 2009)

Thank you all so much for your replies. I've decided to just take it a day at a time. I managed to get an appointment with a urogynocologist at the beginning of January, so once I meet with her then I will have a better idea of whether I need surgery or not. At that point I think I am going to decide if I should get a second opinion. I am just baffled by all of this and how it could have happened to me considering I don't seem to fall into any categories for those who are more susceptible to it. But then again, every doctor I have encountered since being diagnosed with IBS has been left scratching their head about me. One even said I was a "medical mystery" -- not always the most encouraging words from a medical professional, lol. I am going to try and look into alternatives to the surgery for the rectocele, as that is what I am scared about the most, especially since I don't have any symptoms for it. Thanks again for the support, it is greatly appreciated!


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## Kelly56 (Jan 3, 2010)

Julie,HI! This is my first experience with this support group--I have had problems since the birth of my son, 26 years ago. I was told at that time that I had "spastic colitis" which much later became defined as IBS-D. My son was almost ten pounds and unbeknownst to me there was damage to my rectum during the birth. Over time I developed rectal incontinence, which of course has been embarassing and difficult. I had a sphcterectomy to repair the damage to my rectum but continued to have problems.I have been taking a drug called Lotronex for about eight years--very expensive, it was even taken off the market for awhile, but it seemed to help and I would go weeks without a problem. Only this past month did I find a female rectal surgeon who suggested I read a book called "Pelvic Health and childbirth" by Magnus Murphy, MD and Carol L. Wasson. I know you have said that you have not had children, but this book helped explain to me about pelvic floor disorders--among them rectocele. My physician had me go to the hospital for some testing last week---very embarrassing tests but the staff was sensitive--called defography and a rectal ultrasound. She explained that without these tests they wouldn't know for sure what exactly the problem is and how to proceed from there. I was told that I have a rectocele and am seeing her this week to discuss where to go from here. I wish I had some suggestions for you, it is a difficult thing to deal with. Just know that there apparently are many other people who are struggling with these issues...I just found this website last night, and it did help me to know that I am not the only one struggling with rectal incontinence. Good luck to you.Debbie


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## caputsky (Jan 21, 2009)

Thank you, Kelly, for your information and story. It does make me feel better to know that I'm not the only one who has this diagnosis. I have reserved the book you suggested at my library, so hopefully that will come in soon. What I'm mostly concerned about is the fact that I don't fit any of the "red flags" for women with rectocele. I was supposed to have my consultation with a urogynocologist last week, but the paperwork for my insurance referral didn't go through in time, so I had to reschedule it for next week. I just hope that she can give me other options besides surgery, because I really don't want to go that route. Anyway, thanks again for you advice, I greatly appreciate it!!P.S. I had both of those awful embarrassing tests you were referring to done, so I know exactly how you feel about that!


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