Nerve pain from surgery

[Sandra2468]

No need to suffer in silence.Help one another.

Any mesh or nerve complications from surgery?

Make contact.

Sandra

[Suzie49]

Hi Sandra .......I had a vaginal hysterectomy , and prolapse repair in April 2007, then a rectocele repair in the September.  Had excruciating pain for months after and it was decided that I had undissolved stitches that need to come out, so under the knife yet again. I never recovered and have suffered constant pain ever since in that intimate of areas.  Bowel movements can be an absolute nightmare.  I'm damned if I "go" and damned if I don't.  I have been on just about every pain killer there is but nothing touches the pain, and just end up feeling ill and a zombie.  I have had a radio frequency nerve block, which did no good at all.  Finally I was referred to St Thomas's "Input" programme which did help enormously as by that time I had become  practically suicidal.. lost a huge amount of weight, became depressed and my anxiety levels sky high.  Over the years I have become used to it..it has calmed somewhat but I can still get awful flare-ups which last for weeks.  My life has become very narrow as there are many things I can't and don't want to do for fear of making things worse.  All I was told was that it was "nerve pain" and that I had to get on with it....learn to live with it.  All as a result of wretched surgery.

[Hidden in reply to Suzie49]

What is helpful about "Input Programme?"

[Suzie49 in reply to Hidden]

Hi Lorna-doone  .. the Input course is pretty intensive.  You are practically an "in patient" for 4 weeks (though can come home at weekends) .  There are lots of different sessions .... occupational therapy, physical building up and exercise, help on learning how to pace oneself .. information about medication , how that it can often do more harm than good etc. .. learn about the complexity of chronic pain and how it manifests itself.  There are CBT sessions and one-to-one with various group leaders.  And most of all, with a combination of all these things...you learn how to live with and cope with the pain ... and get on with life DESPITE the pain.  For me I had just about reached the end of the road with treatments and so this was a last resort so to speak. You have to be referred by your gp and then have a couple if interviews with an OT and a psychologist at the unit. At the moment there is only this course and a similar one in Liverpool so there is quite a waiting list.  I hope that has helped answer your question.  Best wishes .

[Hidden in reply to Suzie49]

Thanks so much! Wish this was available in US near me. Will do some research.

[Hidden]

Yes, permanent pain from rectocele repair (no mesh) in Feb 2013.  Pudendal nerve entrapment. Hospital and gynaecologist still say nothing went wrong! 

[Allthatjazz123]

Me too. Rectocele surgery in 2010 and have been struggling with nerve pain in that area eversince. Have been round the block with consultants and docs. None can help other than offer drugs. This particular surgery should be banned. It's too tricky and dangerous. If I knew then what I know now before even thinking of op I would have found women's health PT, worked harder with prolapses and used HRT (vagifem). I'm doing all this now which is good but hindsight is a wonderful thing.

[Sandra2468]

Hi Jazz,

What type of rectocel surgery did you have?

Where is Womens Health do you recommend someone there?

And are sessions very expensive.

Thanks,

Sandra

[Rosepetal60]

Hi Sandra, I've had my nerve pain since Anterior ( mis diagnosis) and Posteriior repair in 1997. And as Suzie says life becomes narrower. My quality of life has narrowed a lot over recent times. I've gone from using one Tempur memory foam cushion to needing 3 just to be able to sit down in pain. I tried trigger point therapy but Physio was too rough and I ended up with pain either side of stomach area and digestive problems. So be careful if you decide to go down that route as I have read it can help some people. 

[loadsofissues in reply to Rosepetal60]

I've not had a op and recently developed rectocele - I am staying clear of trigger point therapy and deep tissue massage as i had some before rectocele issue and it made me worse. I had loads of knots in back and legs and they ended up being spread allover.

[Sandra2468]

For those of you still on this thread thank you for posting. So many problems after surgeries it is a mind field out there.

I have not found anyone directly with my pain issues.

Low back pain on waking 2004 eases when mobile but chronic on waking.

2010 anal pushing sensations waking with change of bowel habits and urgency. 2015 Some distal intussusception little trapping and incomplete evacuation. (Morning bidet cleaning regime) Quifora doesn't help discomfort in anal canal. (No constipation)

Sitting discomfort every day of my life but I feel this is poop not nerve pain. (However no constipation)

I am better up and mobile but suffer with fatigue as I can't sleep standing up. I worry to use any med but suffer from deprived sleep.

After considerable difficulty got to see a pain specialist who is organising some facet joint injections as a diagnostic.

A complicated history of pelvic tumours near sciatic nerve but showing stability may be contributing to this prolapse but no definites.

Getting some pain in left front thigh. Have no ideas if this is back or nerve related.

I'm still seeking NHS opinion.

I'm too aware of the consequences from any surgeries , still searching for answers. There appears to be no magic wand for prolapse but there must be some positives out there to ease some of this suffering.

Sandra