Discussions By Condition: I cannot get a diagnosis.

Collapsed Pelvic Floor / Rectal Prolapse in Young Man

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: toddsqui
  • May 22, 2011
  • 00:06 AM

I am a 25 y/o male who has the constant urge to defecate (with accompanied "sinking" or seeping sensations in the area in and around the colon). This condition has slowly gotten worse (degenerated?) over the past five or six years. These sensations are most pronounced in the morning, subside somewhat during the day, and become worse at night, to the point where I am unable to sleep until 1 or sometimes even 2 in the morning. On my worst days, I cannot leave my room.

I am no longer able to exert full energy when I exercise, and even the simple act of smiling is becoming a difficult task. There are days where I miss work because of these symptoms. I have seen a dietician, I have had a urinalysis, I have taken Cipro and Amitiza, to no avail. I have seen a number of urologists and gastrointerologists in the NYC/NJ area (where I reside), all of who seem to agree (somewhat) on the same diagnosis: rectal prolapse, cystocele, and weak pelvic floor muscles.

I had surgery to correct a prolapsed colon (what I initially thought was causing these sensations) in August of 2010 and was feeling GREAT five months afterwards, but the symptoms slowly returned and by January of 2011, I was feeling awful again. I spoke to my surgeon over the phone about this and he said that he thought that the bladder was pressing on the colon which was causing these sensations. He ultimately recommended a second surgery, but expressed the fear that he didn't think his work would hold up. I immediately started looking for urologists and urogynecologists for second and third opinions with the ultimate hope of finding someone with an alternative solution. All of the doctors I have seen so far have either turned me away (not before providing me with especially unhelpful advice or references) or prematurely agreed to treat me before learning that their colleague (either gastro or urology-specialist) was not qualified or experienced-enough to repair such problems, especially in my case (since males do not usually have this problem). I may have exhausted all of my resources as I feel like I'm going around in circles.

The last urologist I saw--yesterday (05/20/2011)--told me that I needed to find myself a specialist in pelvic floor collapsing and provided me with a number to the Pelvic Floor Center in Minnesota. He also said over the course of our conversation (after the basic examination) that I still have a prolapsed colon that wasn't entirely fixed from the first surgery. I called the Pelvic Floor Center yesterday after the appointment and asked a representative to get me in touch with a doctor who might know of a fellow specialist in the tri-state area. I also had all of my records faxed over to the facility to assist their efforts, and am currently waiting for someone to call me back in response to my request.

I am at my wits end here and have no idea who to turn to anymore. I am confused and scared. It appears that no one is qualified or has the expertise to fix this problem. Most doctors (urologists, gastrointerologists, general care physicians) have turned me away, I suspect out of fear of possible malpractice charges (as I am quite a unique case). I fear that if this problem is never fixed that I will need to go on some form of public assistance. I really want to work and socialize and feel normal again, and I am desperate to have this problem fixed.

I am writing this post as an appeal to anyone on this message board who might know of someone who knows someone (preferably in the NYC/NJ/CT area) with the expertise and wherewithal to save me from myself and these horrible symptoms. I really don't know what else to do and I need help desperately.

Any information that anyone on this message board can provide that will lead to a cure will be very much appreciated, whether it be a reference, personal contact, link, or recommendation based on experience or otherwise. I am absolutely desperate and need help soon.

Thank you in advance for your help. I really appreciate it.



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