Reccommendations for doctors

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I have multiple issues in my pelvis from a hysterectomy and bladder sling performed 9 years ago. I've had two surgeries to remove the bladder sling, bilateral pudendal decompression surgery and bilateral obturator decompression surgery. I was diagnosed 7 years ago with Complex Regional Pain Syndrome (CRPS) from the waist down. I've gone to pelvic floor PT off and on for the last 7 years because of my pelvic floor dysfunction. I see a pelvic pain specialist on a regular basis and receive botox to the pelvic floor which helps. However, my rectal symptoms continue to worsen. The only thing that has helped is alternating valium vaginally or rectally to keep the rectal spasms at bay. I don't have true constipation but have a terrible time with BMs because I have a vice grip in my pelvis, especially my anal sphincter. In order to go I have to take enough MG citrate, colace, prune juice, and miralax everyday that gives me diarrhea otherwise I can't go. I spoke with my pelvic pain specialist about a year ago asking him if he thought it was time that I get a good anorectal work up to make sure we weren't missing something. He was quite sure it is all related to my pudendal neuralgia and pelvic floor dysfunction. My pelvic floor PT recently suggested I see a doctor for a bowel stimulator. I don't mind traveling but have decided I really would like to see someone who specializes in anorectal disorders. I've looked at a couple of sites of excellence listed on here and Cleveland, Ohio or Boston are the easiest for me to travel to. Does anyone have a suggestion the best doctor or clinic to go to for an evaluation. Thanks for reading and your suggestions.

 

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If you get up several times at night to pass urine
If you have problems emptying your bladder or bowel
If you have urgency before you arrive to pass urine
your problem may be loose back ligaments

Read "unlocking the female pelvic floor" Kindle books

You may find stories similar to yours and how they were successfully treated

 

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nyt,

You must be giving your doctors nightmares, not to mention your own pain and embarrassment. I too experience bladder and rectal spasms, but nothing like you described. A complete workup by medical folks who do this daily rather than once every couple years does seem appropriate. My colon difficulty is similar to yours, but it is caused by stomach paralysis, which is different and requires a different treatment. Good luck and keep us informed.

 

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Pep, thank you for your suggestion. I've read several books on pelvic floor like by Amy Stein and also Weiss. I'm not familiar with the book you mentioned so will look into it. However, my problem is not loose back ligaments. I have had that all checked out but great idea. I do see a chiropractor on a regular basis because the muscle spasms in my pelvis and legs through me out of alignment and it does help.

Patrick, thanks for the support. Most of the doctors tell me I'm one of the most complicated cases they deal with. Some even have told me that they can't believe I'm able to walk. My recent change to a new neurologist that specializes in Complex Regional Pain Syndrome has been a god sent. He is one of the smartest, compassionate and knowledgeable doctors I've met in 9 years. He is really willing to think "out of the box" for treatments. My recent inpatient lidocaine and ketamine infusions for my CRPS did not tame the rectal spasms and I suggested to the neurologist it was time to make sure there wasn't something that was being missed, he agreed. Thus me finding this forum looking for suggestions for the bests doctors to work me up.

 

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The looseness is often minimal
You can test it
Place two large menstrual tampons in the back part of vagina and see what happens

 

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Interesting idea. Unfortunately, not something I can do because it is to painful for me to insert objects into my vagina plus I have severe right sided obturator internus muscle atrophy which causes a bulge into the right side of my vagina.

 

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I appreciate what you say, but it can be done if you are very gentle. We use this is a standard test. Read the stories in the book and see if your symptoms are similar. If so, there is a good chance you can be helped.
Remember, this is a different system to most of what is practised in the USA.
See how you go
Hope to get some feedback later.

 

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Pep, will get the book and let you know.

 

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I have read the book. Very interesting as everything I've always read focuses on the muscles of the pelvis and usually doesn't discuss the ligaments nor their role.

I have also found several primary review papers that I will also read that discuss the "Integral System."

Nine years ago I was a classic PUL with stress incontinence with cough and would have only checked the box in the first column. I had a TOT placed 9 years ago which was developed by Delorme in 2001 which the placement of the slings are both midurethral slings but the book only discusses TVT. However, I work up from the surgery with difficulty voiding, bladder spasms and urgency that were a nightmare but had problems voiding and I could actually feel the sling on the right side. Five months after the sling was placed only the right side was removed so that I could void. Then three years after that I had the left side removed because I could feel the left side by then, felt it pulling on the left side and increased my groin pain. I have athletica pubalgia from the TOT tearing parts of the adductor muscles and rectus abdominus muscles off of the pubic bone with lots of scarring at the pubic bone.

As far as the exercises. I've worked extensively with PT over the last 7 years. I have obturator nerve damage from the TOT. I can squat but it is difficult for me and I do it as much as I can tolerate. The fit ball is a great idea but I only sit to eat and drive. Sitting is an absolute nightmare for me as it brings on groin pain and perineal pain. Both from the bilateral pudendal neuralgia and athletica pubalgia. I just found out I have a pudendal neuroma at the ischial spine from my pudendal surgery which explains my continued complaints about some of my right side sitting pains.

Due to the fact that I have Complex Regional Pain Syndrome, I am reluctant to have anymore surgery because surgery can spread this disease which has happened to me. I am not all go ho about putting anymore foreign mesh objects in my body after my disastrous experience with the TOT. I'm sure you can appreciate that. I really don't fit the profile of the boxes to check in the book. At some point I will try the tampon suggestion.

As you can see, I'm not a one size fits all. I have multiple problems in my pelvis from the TOT and the hysterectomy that was done at the same time that left my pelvis an absolute mess.