Hysterectomy

[Positivepoppy]

I have no doubt there are many of us that now suffer from PN/PNE since having pelvic surgery. My PNE WAS caused by a hysterectomy and interestingly the surgeon that performed my PNE surgery was adamant prior to this that a hysterectomy cannot cause PNE. However after decompression surgery he concluded that the hysterectomy was probably the cause especially the left hand side where the nerve had multiple entrapment, was squashed, bloodied and tightly tettered to my left ligament.
Also it is interesting that when you goggle this condition websites cite pelvic surgery/hysterectomy is one of the primary causes of PNE. The website of the hospital my PNE surgeon works lists a hysterectomy as top of the list as the cause to say option is divided is an understatement.
I really hope you find some answers and start to rebuild your life

[ColSkiier36]

Hi,
I had a partial hysterectomy in 2012 and have this nerve damage. I kind of think I had it before my surgery though. My Dr. thought my pain was from endometriosis, but I still had the pain after the hyst and it was WORSE! I don't know what the answer is, now I have to deal with hormonal issue, loss of organs, increased risk of osteoporosis and cardiovascular disease ( I am only 36) and now the nerve. I wish doctors performing the hysterectomies were more educated about everything in that area. If you need help with your legal case try the HERS Foundation they offer help with legal issues and hyst, I know my Dr never mentioned anything about possible nerve damage to me, and she made it sound as if I would "breeze" through everything because I was "young" (32 at the time) I think that made it worse for me and for my body. It is something I wish I could take back, because now I live in pain every single day. Searching for answers and so glad I found this site, hang in there.

[ColSkiier36]

Hi,
I have PN from a partial hysterectomy and left ovary removal; although I think I had some nerve problem and possibly an aggravated PB before my surgery. I experienced pelvic pain for years, and a feeling that something was stabbing me deep inside, bowel problems. I had a diagnostic lap done in May 2012 which confirmed endometriosis stage 1, the Dr. removed it from bladder, colon, and left ovary. After that surgery I was in searing pain, it felt like someone poured acid inside of me. I kept going back to the Dr. I couldn't sleep, I was taking pain killers (I never did before) and when she offered the hyst I thought it would have been a cure all for my issues, little did I know it was the beginning of a new set of issues. I now have urine retention, bowel movements feel like broken glass, sex with husband is out of the question, pelvic floor spams, and a feeling of UTI. I went through cystoscopy and urodynamics testing this month. Trial of InterStim is working for the urine retention but not for the pain, therefore I am not doing it. I am going to keep reading on this site- somehow there has to be a way out of this even 50%. Like many I regret my hysterectomy, but I don't really think it is the hyst that causes it per say vs the way the surgery is done. My now Dr. said he sees women was had laps done for gall bladder or other reasons with PN problems, maybe it is the way they insert the instruments? I am starting a blog about hysterectomy with this information included, I wish I knew more then; people need more education about their bodies.

[cubsfann@comcast.net]

Hello Everyone,
The Ketamine infusion did not work on the pain, however it did help my mood for awhile. Still plan on the pudendal neuromodulaton (Dr.Peters) / stimulator implant in June. There really is nothing left to do that I know of. At least this will be a 2 week trial and then I may have it permanently implanted if it helps with the pain.
I'll keep you posted.

[lisa2014]

Hello,

I would like to bring up this topic again, because I also had a hysterectomy and ever since I live with the worst Pain I ever had.

I am collecting information about the possible link between the operation and my Problems. So I would be very interested in other peoples stories concerning that issue and even more in some more scientific articles on the topic. I will do a little research myself and keep posting the results.

So my question is: who else would like to share her story about the link between a hysterectomy and the developement or aggreviation of PN-issues.

Thank you so much in advance!
Take care,
Lisa

[Positivepoppy]

I would be happy to share my story as a hysterectomy has caused bilateral nerve damage and in short has ruined my life and career

[lisa2014]

I feel the same.
It is only one sentence that you wrote, but there is not more to be said. You described the story of my life as well as of many others (?).
How do doctors deal with that? I was told, that that could not happen... and I was sent back home as the operation went "perfect", without any complication. My PT ist sure, that it was the operation that cause the huge rise in my pain levels.
Positivepoppy, when did you have the hysterectomy? How long and how are you fighting against the pain?
And who else has similar experiences to share?

[Laramarie]

Hi ladies
I did not have a hysterectomy but had a Gynecology surgery in 2011 that caused my PNE. In August 2011, I had an anterior and posterior repair with a tvt mesh for a rectocele and cystocele (prolapse). I woke up from surgery in excruciating pain. My surgeon didn't know what was wrong with me and after 3 months of me complaining of pain actually took me back to surgery and made things worse. He finally admitted that I had a "nerve entrapment". I did all my own research thanks to "pudendal hope" and found the doctors that I needed to get in touch with. I ended up with a very entrapped left pudendal nerve discovered during TG surgery in December 2013. I ended up losing my nursing career..... But I am not going to let this take over my life! I am still fighting. I pray everyday that we will all recover from this horrible infliction.

((Hugs))

Lara

[lisa2014]

Hello Lara,
thanks for sharing your story. It is very hard for doctors to "admit" that it was their surgery that caused the problems and pain a PN-patient is dealing with afterwards. I also had to do all the research by myself. I don't know where I would have ended without this forum.
We are supposed to do a lot of "homework" or research to find out what and who could be helpful. With PN you are not "just a patient".

I think obgyns should be more aware of this risk.
So who else got his/her PN due to a surgery?

[Positivepoppy]

Hi Lisa
I had my hysterectomy June 2013 and instantly knew something was wrong. The surgeon told me the hysterectomy was without complication and nothing wrong. Fast forward 5 months later after numerous specialists I was finally diagnosed with bilateral PNE, had decompression surgery 5 weeks later. 7 months on still in chronic pain and at the grand old age of 41years applying for early retirement on I'll health from my beloved teaching post. Means I can never teach again and devastated.
Of course no-one medically will admit blame and wish with all my life I'd never had hysterectomy but I have and being a very positive person need to adapt. Does help that I have such a supportive husband, family and friends and they would prefer me around in this state than not at all. I pray we all get some help and quality of life back. Take care x