Pudendal Neuralgia?

[anna2]

For the last 6 months I've had a variety of pelvic pain - knife like vaginal pains, a feeling that something inside is ulcerated, a painful 'twanging' sensation, progressing to sharp pain in groin/pins and needles during BMs and a 'sensitive' perineum. The first doctor thought it might be diverticulosis and sent me away with some antibiotics, the second thought 'vaginal atrophy' and gave me some Vagifem (symptoms do seem to have eased since), the pelvic and transvaginal ultrasounds failed to find the usual suspects - ie fibroids, endometriosis, cysts and a prolapse has been ruled out. For some reason (atrophy or tilted uterus?) the attempted pap smear was excruciating and they are talking about doing one under general anaesthetic. Have yet to decide on that one. Everytime they poke around, (even the ultrasounds) the symptoms worsen.

The gynecologist said that any BM pain was not her territory and I would have to see someone else for that. It seems to me that it is all related. It would be nice to see some joined up thinking!

For the moment the symptoms have eased in that I no longer have pain during the day - it tends to set in mid to late evening. Then if I continue moving around it gets worse and I have a sleepless night as it hurts to turn round in bed. Just about the only thing to do is to get to bed at the first twinge.

The condition that fits the bill imo is pudendal neuralgia/nerve entrapment. I just wondered if anyone else got this diagnosed and how?

[hilarycavagnoli]

I have pudendal neuralgia. The only way I could get it diagnosed was by me insisting that I had it. I asked for a neurologist but they sent me to a dermatologist. However, she was intelligent enough to agree with me. I am now being treated by an anaesthetist and she has put me on high dose anti epileptics (pregabalin or lyrica if you prefer). I can still feel the pain but it's greatly improved. Actually, it is more of a sensation than a pain. I am shortly to start electroshock treatment in the vagina. I can't wait. I have had this affliction for 49 years. Don't let this happen to you. Oodles of love and good wishes.

Hilary99

[hazels88 in reply to hilarycavagnoli]

I hugely sympathise with you having this for so long - I wonder how you got it - for me it was an accident - a fall and I have it now for 11 years. I did not think at the time it would be such a big deal, used to things going after a while and I expected this to fade away too. We are constantly told of the wonders of modern medicine so feel cheated that for something that is a fairly minor thing like a nerve irritation, it is impossible to sort out. I wonder do you have any tips/thoughts on how to manage mentally? - I find it helps to have positive thoughts to keep spirits up and stop negative stuff in my head. How have you coped over such a long time?

[Lookingforanswers]

I cant believe that you have that condition 49 yrs!! It must have had a devestating effect on your life? I have my pain only 4 years and its not as bad as it only happens on arousal, but its had a profound effect on my life, I was prescribed Lyrica but wouldnt take them because of all the side effects. How do you find them?

[Hidden]

Here's my story LookingforAnswers. You'll find many answers here. I'm trying desperately to raise awareness for the condition I've not had for over 6.5 years. I was diagnosed at the 4.5 year mark and since started to make progress. This issue needs its practitioners and not dumb founded looks!

pudendalnerve.com.au

Good luck love

[Argonne]

I was diagnosed with PNE . Pudendal nerve entrapment after four years of pain and misdiagnosis The diagnoses was made by EMG exploration, I.e electromyograph after seeing a consultant neurologist who knew the condition. The key to pain relief was pelvic floor physiotherapy. These specialist are few and far between here in Spain, where I live and I believe it is the same in the UK . Good luck

[janeingirona in reply to Argonne]

Hello Argonne

I'm in spain and suffering undiagnosed pelvic/rectal/vaginal pain. Where did you finally get diagnosed? Been told it's not gynaecological but can't believe that! I think it has to be something like adenomyosis or pudendal neuralgia - something that was missed on my ct scan and laparooscopy.

I have health insurance that should cover hospitals anywhere in spain.

Many thanks. Jane

[Argonne in reply to janeingirona]

Hi again Jane . The neurologist is called dr Elices tel the clinic 971448500. You will probably get the main switchboard . Ask to be put through to neurologia . He is one of 3 neurologists at the clinic so make sure you see him . Good luck

[kiwi1 in reply to janeingirona]

Try looking at pelvic congestion syndrome

[Argonne]

I was diagnosed at the Rotger clinic in mallorca

I saw a neurologist who sent me for an electromyograph test

It's a bit painful but worth it to prove that the diagnoses of pudendal nerve entrapment was correct.

[2cv1964]

Pudendal Nerve Entrapment

Hi, from sharing your post above I think you are definately suffering from the Pudendal Nerve beening entrapped possibly in the Alcock canal. I have suffered getting on for 10 years following a Hysterectomy Operation performed in France (where I live). I visited the guru Dr R. Robert in Nantes

in July who said that I should seriously consider having the Operation to release the nerve. I have just joined this site to try and find out a bit more about the recovery of his Operation and also to find out who else has been suffering from these horrible pains in the bottom left side hip vigina pain down the back of the leg and sometimes it feels like I have been kicked between the legs by a horse. I have been taking anti-inflamatory tablets, Panadol and RIVOTRIL to calm the nerf (which it does) until I start to sit down as I am now typing this post. I am leaning over to the right as I cannot sit on my left butt. I sympathise with everyone on this site as it is absolutely appalling. Let's hope we can all help each other in the right direction. I have heard that there is help at Bristol Hospital?

take care.

[jfrhein]

You described me perfectly, I'm now seeking alternative physician advice... as my gyn and urologist do not explain this kind of pain related to other diagnosis I have... so its a mystery...should I go to a pain doc ?...not a pain in the neck doc ..ahah !!