hysterectomy and negligence

[Positivepoppy]

Hi I was wondering if anyone has developed PNE as a result of a routine hysterectomy and consequently life has been turned upside down. I have posted my story on several posts and decided to take a break from the forum as I've been struggling with the major life chances I've been forced to make due to this chronic condition. Have been told numerous times by so called specialists that a hysterectomy cannot be the cause of PNE but I vehemently disagree and I know my own body. I'd be really interested to hear from anyone who has had a similar experience and if they've considered medical negligence? Thanks.

[Violet M]

Hi Positive Poppy,

There have been a number of women who have posted on the forum over the years I've been moderating who developed PN pain after a hysterectomy. According to the published literature, pelvic surgeries are one of the possible triggers of pudendal neuralgia. I don't know how it works in the UK but in the US, my understanding is that it would be pretty difficult to prove negligence unless the surgeon did something out of the ordinary and didn't follow the accepted protocols. I know that makes it very difficult for the women who are affected.

Violet

[Positivepoppy]

Thanks Violet I have now decided not to pursue the negligence route as its too stressful and you're right it'll be very difficult to prove. I think it was a knee jerk reaction as I've now been forced to relinquish a successful 20 year teaching career that I loved and finding it difficult to come to terms with the dramatic impact PNE has had on my life and my family.
I'm a positive person and taking each day as it comes. Your journey and others keep me buoyant and optimistic as I know you have experienced significant improvements which is fantastic. I had decompression surgery 11 months ago but surgeon has suggested entrapments are too deep and he couldn't visualise to decompress. I live in daily hope though that things will improve and find the forums a source of inspiration. Thank you

[Alan1646]

I read reports of surgery at Bristol with great interest, because from time to time I consider it for myself.
Having read your description of your nerves Poppy, which presumably came from the surgeon, may I ask you a question that occurs to me: you say the PN pain started after your previous operation-so was the condition of your pudendal nerves caused by that operation, or was it a long standing , historical condition that was somehow exacerbated and translated into pain by the operation?
I have in mind Ezer's recent posts and the descriptions he was given of the condition of his pudendal nerve, and wonder whether or not there is a connection between such descriptions/observed state of the nerves and pain.
I'm sorry if I haven't explained this very well,but I have been told by pain management experts that often people can have significant objective damage to their bodies, and yet have no pain while sometimes people have no observable defect or damage yet suffer severe pain.

[Positivepoppy]

I do follow your train of thousands it's an interesting debate. I had never knowingly suffered with any type of nerve pain prior to the hysterectomy, I was a super active gym fanatic and worked long hors as my job as a teacher. I had bonded of energy, still do psychologically just sadly physically my body resist. I have absolutely no doubt that the hysterectomy cased the nerve entrapment s and even Mr Wong the surgeon that performed the decompression surgery has now conceeded that the hysterectomy was the likely cause.
Are yo thinking of surgery in bristol, how long has PNE affected your life?

[Violet M]

Positive Poppy, I am so sorry you have had to postpone your teaching career. Some people hate their jobs but you obviously loved yours and I hope you will be able to get back to it before too long. Do you have anything to keep your mind occupied these days? I remember when I was in bed for so long I used to go online a lot and I also read some good books.

Violet

[Alan1646]

Poppy, I've read a number of posts on this forum over the last few years by people who have had decompression surgery at Bristol, some as NHS patients and some as private patients. I can't recall one that has reported significant improvement or a cure. I don't know what the Bristol aftercare or follow up procedures are and I don't know whether they keep any statistics on their success rate for PN decompression surgery . There may be figures and information available somewhere, but I don't know how to find it. I would really like to have much more encouraging information before committing to surgery.

There is a theory that people who have successful surgery don't post on forums such as this because once they are better they just get on with their lives and immediately lose interest in discussing their past illness.

I would like more information about results at Bristol before I decide.

I understand that so far your surgery has not been a success, but some information states that it can take up to two years to know the full effects of PN surgery, so perhaps there may be light at the end of the tunnel for you. I know that nerves can take a long time to heal. I hope your pain reduces over time and that you'll be able to return to teaching. I am struggling from day to day - I hope that one day there will be new medication for this condition.

[Positivepoppy]

It saddens me to report but I did not receive any after care from bristol. Mr greenslade diagnosed my condition and I was categorically told that the entrapment s were so bad that surgery was the only chance I had of any relief or success. I was promised after care prior to surgery but after surgery when I tried to make a follow up appointment with Mr greenslade his secretary informed me that I was no longer his patient and was not allowed to book with him under any circumstances, rather strange as I was a private patient and had already paid £6,000. I have not set eyes on him since my diagnosis Nov 2013!
The success rate after surgery that bristol use is can a patient sit for the duration of a film without a flare up. I am almost positive that no follow up app are offered after the initial one after one month unless the patient requests it and pays so I can't understand how success can be monitored or measured if they are no longer in touch with the patients?
To give a balanced account though Mr Wong has been very supportive when I've asked him to write reports etc for my early pension and school. I have needed to pay though for extra consultations.
Through hours and hours of research and sheer bloody mindedness I managed to put a support aftercare network in place that has consisted of internal/external physio, hydrotherapy, tens machine, AMATSU, hypnotherapy, very supportive GP and lots of love!!
Good luck on your journey and you are right maybe people who do recover spend less time on forums than those that are still in pain? We'll never know?

[Alan1646]

Poppy, I hope you were able to get ill-health retirement. At least that will help you financially
I wonder whether we should have a payment by results system.
I hope your pain eventually subsides. There are some stories of improvement or recovery on here, some after many years.

[Positivepoppy]

Hi Alan
Fantastic idea to pay according to success rates, doubt the surgeons would embrace it though. I'm sure you'll make the right decision for you and m post is not to put you off I'm just truthfully sharing my experience with bristol and surgery. There are lots of success stories to balance out those that have not been so good.
I really hope you manage to work out what you need to do and if I can answer any questions impartially I will try.
Good luck and take care