Hysterectomy

[Christinercannon]

Can anyone tell me how many people have you read stories about HYS. causing PNE? My HYS caused it and I lost 2 years of my life . I've had 2 surgeries is ce my HYS & the last one was pudendal decompression nerve surgery, which I'm still trying to recover from. All of these surgeries were in one year, my body is so worn out that I can sleep for days. I know others are out there how had this happen during a HYS. If anyone has has the nerve decompression surgery please reach out to me as I feel alone and I don't know what the first year is going to be like. Thank you

CC

[nyt]

They do know that some develop PNE after hysterectomy but when you ask the doctors how they really aren't sure. Some think it could be due to the positioning during the surgery. Some think that if you needed a radical hysterectomy it could occur from that because of how far down they have to dissect. Some think with vaginal hysterectomies that if the doctor is aggressive in pulling the uterus through the vagina that could cause it from stretching. But, no one knows for sure.

Be gentle with yourself. Sounds like you've had several surgeries close together and you just need to take it slowly.

[Positivepoppy]

Hi
I had a full abdominal hysterectomy June 2013 and woke up in chronic pelvic pain. I saw numerous specialists and was told I was a puzzle and no one knew what to do with me!! I hit rock bottom and then threw myself into intensive research on the Internet until I came across the elusive condition that is PNE!! I saw an excellent consultant nov 2013 and consequently had bilateral pudendal decompression surgery in jan 2014. I am in recovery and early days but able to have a daily walk and even managed a visit to a pool and using a float just kicking gently completed 10 lengths.
How are you doing and finding recovery? It's an awful condition and like mine I'm sure it's turned your life upside down!!
We must stay positive and believe in time we will have our lives back.
Take care and keep believing!

[JackieOUCH]

A very highly regarded surgeon informed me about a specific case of pudendal nerve damage from hysterectomy. The doctor was convinced it was because of positioning during surgery.

This particular surgery was being observed by students and the doctor believes that the legs were positioned too far apart and that students pushed them even farther apart to get a better view of the surgery.

The patient is in a wheelchair now.

Still gives me the chills.

I would imagine there could be many possible scenarios during a hysterectomy that could cause PN damage, but this seems to definitely be one of them.

Less pain,

Jackie OUCH

[Christinercannon]

Thanks for the replies. It is so hard to stay positive, my surgeon said it will take 12-24 months before getting back on my feet with less pain. I had nerve entrapment on both side and the right side was really bad. I can't get any of the doctors to admit it was from my HYS, which makes me more depressed as I'm losing everything, home,etc as I've had know income for a year now and my attorney is still trying to get my case on the court schedule. All a doctor has to say is my condition was from the HYS but they stick together. I wish I could find one that would put this on paper. My strength is very low and my family doesn't understand why I'm not able to sit or be my old self again. I hope positive things happen for all of us, we deserve it.

Xox
CC

[Violet M]

I didn't have a hysterectomy but I was considering having one a year or two after my PNE surgery and the urogyn said she would not even consider it because the procedure would involve pulling the pelvic floor muscles tighter which could aggravate the pudendal nerve. So, I think with some people, during a hysterectomy, there is a tightening up of the pelvic floor especially if there are any pelvic floor repairs.

This begs the question why do some people get PNE after a hysterectomy and others don't. My understanding is that some people with PNE may have a genetic musculoskeletal predisposition to it. My mother developed PN-type symptoms after her hysterectomy and has had mild symptoms off and on since. Dr. Bautrant feels it can be genetic. He told me that he had treated a grandmother, mother, and daughter all in the same family.

Violet

[cubsfann@comcast.net]

Hi,
So sorry to hear about your pain. Sounds like you are doing everything you can- don't give up.
I did develop PN after a hysterectomy and, of course, the surgeon will not or cannot tell me what part of the surgery caused this. Most likely has to do with the TVT sling insert as well. I NEVER had pain prior to the vag. hyst. (done for prolapse). 5 years later- still suffering and after multiple treatments and surgeries, I still regret having the pelvic surgery- I admit I'd have rather be walking around with my uterus dragging on the ground and wearing a diaper than have this awful chronic vaginal/ pelvic pain.!
Keep trying, however- something has to help sooner or later. Like I said in my profile, I have tried everything short of Ketamine infusions(to reset the brains pain signals) and the pudendal neurostimulator I plan on having inserted in June. I will let everyone know how it goes.
I so understand how miserable and difficult this is to accept, especially after trusting a surgeon who destroys your life and cannot or will not tell you why or what happened to cause this.
If you have any questions, I will try and help. You are not alone.
Cyndi

[Positivepoppy]

Hi
These posts really strike a cord with me as since the hysterectomy I have been in chronic pelvic pain. My surgeon thAt performed the hysterectomy told me on numerous occasions that I was a puzzle and a mystery and because the MRI came backin clear he was exonerated from blame and I was left to my own devices. I am no medic but I do know my own body and have never ever suffered with any nerve related pain prior to hysterectomy and wish I had never had it done. There is a link but very difficult to prove especially if you have prior gyny issues
Stay strong and x wish you all well

[Violet M]

There have been cases of pelvic floor repair where there was a misplaced stitch into the pudendal nerve. Not sure how it would be diagnosed but definitely something to consider, especially if your pain is primarily one-sided. Dr. Hibner treated a woman who had this problem and there have been others documented.

Here is an interesting article on Dr. Possover's website:

http://www.possover.com/files/media/de/ ... e_2012.pdf
http://tinyurl.com/obfop7z

[Addysgammie]

I have had a hysterectomy with the TVT repair too and had 3 surgeries to remove the mesh and the last one rebuilt the pelvic wall and removed the last of the mesh. I see that DR Mikilos did your one of your surgeries I had his partner Dr Moore do my last surgery. I have had pudendal blocks, ganglion blocks and hypo-gastric blocks with no relief. It's been 6 yrs and I'm on pain meds and see the dr each month but I am afraid to do anything else. I still hurt bad every day and wish I had my life back but every time I had a block or procedure done it made it worse. I also had 12 wks of pelvic and rectal therapy only to aggravate it more. They want to do a spinal stimulator and I won't let them. I ve talked to a pudendal nerve Dr and he said don't do it. I could come see him and he could do surgery if need the next day. I don't know how I would handle doing that with 2 children and a grand child that live with me and husband travels for his job. I'm also just scared it will get worse. I have learned what to do and what not to do to aggravate it, in the summer months I feel some relief in the swimming pool . I don't drive, can't sit for long and just do what I can do. I have days where I can't wear underwear or pants and then days of incontinence bowel and bladder.

I wonder really how many of us there are out there from the Hysterectomy's ?

Addysgammie