New from Texas

Hi,

I am so happy to find you all. I now have some hope.

My history: Forceps delivery in 1997 after prolonged pushing (posterior presentation/turning) resulted in a 4th degree tear. Repair done at time of delivery.

Approximately one year later, I began having the symptoms of myasthenia gravis (a form of muscular dystrophy) and was soon diagnosed with it. I began having incontinence episodes (urge and stress urinary incontinence and fecal incontinence, esp with diarrhea or soft stool). Unfortunately, the meds I used for the MG caused diarrhea as a side effect, so there have been many, many episodes of soiling in the past 14 years. I take immodium daily and now control it "most of the time" although the urgency is always there.

I began seeking opinions on my obvious (to me) pelvic floor problems about 3 years later, when I could feel that my cervix was resting pretty low and I began having difficulty with tampons, etc. Three doctors over a 6 year or so period proclaimed I had no issue whatsoever--except maybe that little rectocele. I was to go home and do kegels.

During all of this time, I was struggling with the muscle disease, and finally reached a point of "near death" functional level in 2010. Two years ago, I had a bone marrow transplant in a last ditch effort to stop the progress of the disease. It worked...but left me in instant menopause at age 48 due to the high doses of chemo used in the bone marrow transplant.

I felt better, but had had enough of medical stuff until this fall, when I decided to address the issues, and made an appt with a uro-gyn with an impeccable reputation. Several weeks of testing followed and last Friday was my consultation appt where we'd discuss options for treatment.

No options were really given--more or less ORDERS were barked at me: Total abdominal hysterectomy, mesh sling, bladder neck support and he'd have a colorectal surgeon come in and repair my 95% unconnected internal anal sphincter. He made it sound so easy--just lay down and let them slice! He said he has a 1% failure rate...not comforting at all to me who has a rare muscle disease and a child with autism! Statistics mean little, if you know what I mean!

Uhhhhhhhh, no thanks! The mesh stuff really scares me because in addition to the erosion issues, is the fact that I am soooo sensitive to tapes, latex, other plastics, I absolutely could not risk that. Besides, the doctor was an arrogant so and so...

I began searching as soon as I got home, and am awaiting my book order, am reading as much as I can find, and am planning on doing a concerted effort to really rehab my pelvic floor. I doubt that the anal sphincter will heal at all anymore, but then I also know that surgery to repair the sphincter only might not work either. So I am here to read and learn and try to get better.

Just call me "boo hoo" because at this point, with all I have been through, sometimes that's what I feel like! LOL

Thanks for reading!