hernia too

[Grammy]

In 1972 I gave birth to my second child. He weighed in excess of nine pounds and it was a difficult forcep delivery. Literally took two nurses to hold me on the delviery table. I immediately developed a prolapse of the uterus and had a surgery that was called a Kelly Plication which I understand is not done these days. However the bladder was tacked to the uterus and the uterus was pulled vertically as much as it could be and was stitched to the abdominal wall just below the belly button. Believe it or not this worked for 26 years. I lifted a heavy box over my head and suffered extreme pain in 1994--walk the floor pain. It was felt that the uterus was coming down and should be removed. BAD MISTAKE The entire pelvic floor prolapsed and I have had five attempts via huge surgeries to repair the pelvic floor. I have not had one day free of vaginal discomfort, pressure and burning in over sixteen years. I am only here because my husband has been at my side throughout it all. I have an odd physical thing that happens to me and I will try to describe it. If I bend at the waist it feels like the vagina will fall inward and when I stand I can actually hear air being released from the vagina. I have been tested by Dr Conway and he feels that I have three entrapments of pne. He only gave me a 50 percent chance of being 50 percent better and he said that most likely he would need to close the vagina for further support. Needless to say I just do not know what to do. I have tried more nerve blocks than I care to discuss and I have been on opiate medication for years. I am thinking about going to see Dr Peters in Michigan to see what if anything he can do. I am constantly under so much stress and I have days when I need to stay in bed. According to all that I have read I would not have surgery by Dr Conway even though I live in NH. I feel that my best bet is most likely Dr Hibner but after having so much surgery I do not have much courage to try another. Has anyone had such a difficult case and came out better? I would love to hear from you. PLEASE

[Karyn]

Hi Grammy,
I live just over the border from you (MA) and am also a patient of Dr. Conways. I think he's a fabulous doctor and feel very fortunate to have him so geographically close. However, I'm scheduled for surgery in January and it's not with him. Your story breaks my heart. Grammy, IMO you are waaaaaaaay out of Dr. Conway's league. While it may be true that you have PNE (I really don't see how you couldn't), the condition of your pelvic floor is equally alarming! Where does Dr. C think your 3 points of entrapment are? Are they unilateral or bilateral? Who did the 5 pelvic floor surgeries? Were they local? I don't think all the medication in the world (nerve blocks included) is going to be very helpful to you. I'm not familiar with Dr. Peters but I would like to humbly suggest contacting Dr. Shobeiri's office in Oklahoma City:
http://www.oumedicine.com/body.cfm?id=1367
I honestly don't know if he can help you or not but I do know that in addition to being "PN aware", he also performs pelvic reconstrution surgeries . I know ...
you're probably cringing right now and rightfully so! But I'm just taking a stab here, thinking you may need someone with experience in both areas. I would like to clarify that Dr. S is new to PN decompression surgery but certainly seems to know his way around "down there", which is why I've chosen him as a potential surgeon. Please take note of his credentials from the above link. I would also like to share with you that I was told Dr. Shobeiri doesn't speak to patients over the phone.
But I did want to provide you with another possible option and hope you find someone, anyone who's able to help you!
With love and best wishes,
Karyn

[Griff522]

Grammy, I have seen Dr Peters. He is a urologist that specializes in womens pelvic pain. My personal experience with him wasn't very informative regarding PN. I think he mostly treats IC patients and his solution to the pain is to implant the InterStim sacral nerve stimulator. Here is a link about it http://www.beaumonthospitals.com/research-urology

[A's Mommy]

Dear Grammy,
Your story is just heartbreaking. I understand the pain and frustration but certainly nowhere near the length of time you've suffered. I am in complete agreement with Karyn; you have so much going on in your pelvis that you need not only a doctor that knows PNE but a doctor that will do pelvic reconstruction on you. You deserve a much better quality of life and I believe you can get it.

I will be praying for you and your husband, who must feel powerless to help, but desires to see his wife free from pain.

Please keep us updated.
Sincerely,
A's Mommy

[pianogal]

Dear Grammy,

Thank you for joining our circle of friends. I am so sorry you've had to endure so much pain in your life. I think it's worth a shot to get Dr. Hibner's opinion, like you mentioned... ask if he does reconstructive surgeries. I believe he only does one PNE surgery a week, but is doing other surgeries 3 days out of the week... so he may have the expertise you need for both.

You mentioned

I have an odd physical thing that happens to me and I will try to describe it. If I bend at the waist it feels like the vagina will fall inward and when I stand I can actually hear air being released from the vagina.

and I wanted to let you know that I can hear air being released from my vagina too. When I lay on my back, and put my legs up onto the wall so my pelvis is suspended in the air at an extreme tilt, as I am moving each segment of my spine toward the floor while my pelvic tilt is rotated upward, my pelvis releases a lot of air (almost like passing gas). You are the first person to mention anything similar to me... I have no idea why it happens, but I discovered this when stretching one day in a strange contortion attempting to alleviate my pain. So, hello stranger... you are not alone.

[Griff522]

I experience that sensation as well.