Pudendal neuralgia??

[Joyliz]

Hello all, I`m a newbie and soo glad I found this site.

I`ve had pain radiating down my left groin and into my genitals for four months. I`ve had tests and scans and everything came back as ok. So I was diagnosed with unexplained neuropathic pain and given pregabalin.

These have worked to a degree and I have a bit of my life back, but I`m still having to add diclofenac and paracetamol to get a bit more pain relief.

As my GP had settled for unexplained neuropathy, I began searching my symptoms myself and when I found prudental neuralgia symptoms it could have been written for me.

My symptoms ticked just about evey box.

Now where do I go from here?

From what I`ve seen written this condition can be cured, and I`d like to start that journey and get a firm diagnosis.

Is there a list of UK hospitals, specialists etc,. that I can access?

Also I read that therapy can help, would that be an osteopath, chiropractor or the Bowen technique?

So many questions, I know. But any help would be really appreciated.

thanks

Joy x

[FKSW]

Hi Joy,

I had bilateral pudendal nerve entrapment. Unfortunately, GPs in England don't seem to recognise or diagnose this condition. I went to London, to Dr. Baranowski for a diagnosis, he works at UCL or a private clinic. The waiting time to see him on the NHS is about 9 months. I don't think you want to wait, as you don't want it becoming chronic and worse if it is pudendal neuralgia. There are doctors in Bristol, Dr. Greenslade, and in Manchester, Dr. DeMello, who also do the diagnosis and nerve blocks for the condition. Ultimately, after my diagnosis I went to France for surgery. The doctors in Nantes do diagnose the condition as well, but I suppose it might be better for you to get a diagnosis before making that journey.

As for physical therapy, I recommend getting a diagnosis first. I saw osteopaths, chiropractors, acupuncturists etc, and they treated my symptoms but not my underlying pudendal nerve entrapment. And they often told me that it was not pudendal neuropathy, which may be momentarily reassuring, but in the end the pain always returned and I wasted time pursuing this route as a treatment rather than seeing it as a complimentary treatment for pain management. Any more questions, please ask.

Fiona xx

[Joyliz in reply to FKSW]

Hi Fiona, thanks for your reply. Sorry I took so long in getting back but I got lost around the internet, looking for answers from people living in the UK. I think Dr Baranowski is my best bet, you`re right I don`t want to wait 9 months. I think I`ll have a problem with my GP refering me, he`s already showing signs of not diagnosing PN. Can I do a self referal?

May I ask if your surgery was successful?

thanks again

Joyx

[JudyRentz in reply to FKSW]

Same for me in US?im so glad you're giving drs.names.....it's all too sad. Let's all spread the word..judyr

[She1 in reply to FKSW]

Can I ask what prompted you to go to France for your surgery, as there are people you name in England doing it, and I am rather curious? Thanks She1

[Scooby747 in reply to FKSW]

Hi Fiona can you let me know how you got the pudendal entrapment. I had a tvt bladder mesh implant September 2013 and woke up not being able to move my left leg and left groin pain shooting down left leg. 8 months on and no change. The withdrawal from gabapentin which has caused a intolerance reaction has been like a heroine withdrawal I am told ... And pain as bad as my childbirth- so looking for answers and where best to have the mesh removed - search tvt mesh implant complications on tweeter or google to see what it has done to thousands of women - need help to control the pain - need help to get it out! Can you advise?

[Brevispink in reply to FKSW]

Hello Fiona. I hope you are still reading these posts! I think I might have pudendal neuralgia. It feels as though every nerve in my bottom is on edge. It seems to have spread to my vagina. I had a urinary infection in June and have been given 5 lots of antibiotics with resulting five bouts of thrush. After a cystoscopy, swab test etc the urologist says there is nothing clinically wrong and thinks I have vulvodynia. He has referred me for specialist physiotherapy for pelvic floor muscles. My pain is all-consuming and unbearable. Would you get referred to Dr Baranowski by the GP or by the urologist if you were me? How do they make their diagnosis?

Thanks so much for any information. I am desperate!

Caroline x

[Matilda1304 in reply to FKSW]

Hi Fiona, I have PN post surgery was wondering how you are going and who did your surgery in France? I live in Australia . Thank you Andrea

[Hopefulforthefuture in reply to FKSW]

Hello FKSW,

Was your surgery successful? If so, would you mind sharing the name of your surgeon in France? I live in Europe and have been diagnosed with pudendal nerve entrapment. I am told the surgery doesn't have a high success rate, so if I do it, I obviously would like to go to the best.

Thanks for your help

[juliahall]

Hi Joy, I have been left with pudendal neuralgia following bladder repair surgery. I demanded to be referred to a specialist gynae physio and she has been giving me accupuncture for two months and that did help a lot. Unfortunately the pain has returned and I have had to go back onto medication (tegretol). I am continuing to see her and hope that she can help again but I have also been referred to a neurologist to consider cortizone injections into the nerve as this has some success. I keep being told how slowly nerve damage heals and to be more patient but it is difficult to be calm and positive when you wake in pain each day. I did get advice from this site about a cushion to help with the practical day to day and altho it was expensive I went ahead and bought it and it is good. I can take it in the car and to friends and feel much more comprtable at times. It's a Valley cushion; just look them up on their website. I hope you start to recover soon. Julia

[Joyliz in reply to juliahall]

Hi Julia, thanks for replying. I`m taking pregabalin at the moment, I`ve increased the dose to 300mg a day, and it is helping.

You also seem to be going down the conservative approach ( I believe that`s what it`s called?) only on different meds to me.

I hope you don`t mind my asking, but have you had a definite diagnosis or, like me, found that you have every symptom of prudendal neuralgia and believe that`s the cause of your pain?

I`d like to think that this conservative way will heal the nerve, but then wonder whether I should get a firm diagnosis as I`m wary of waiting and damaging it more?

It`s difficult because my GP`s head seems in the clouds regarding PN and I believe it`s going to a battle to ask for a referal.

Thank you for your information about acupuncture and the cushion, I`ll definitely look one up.

I hope your pain`s getting better, it`s horrible, as you say waking up every morning with it.

Joyx

[juliahall in reply to Joyliz]

I was diagnosed so no it's not just about checking symptoms. Is this the conservative approach? I didn't know there was any other.

[Scooby747 in reply to juliahall]

Hi guys the drug I am having heroine like withdrawal from is gabapentin / it is addictive and the hospital put me on a 900mg dose with 150mg of tradamol - a combination the drug watch says is not recommended as the gabapentin enchanted the opiate effect. After time like heroine it stops working so I was increased to 1200 mg - my nerve pain spread all over my body and face and I couldn't move my arms / this is a sign of not tolerating it- to come off your body crashes, sweats, shakes, breathing troubles and it's hell/ don't ever increase. Pregabalin is the replacement and is just as bad to come off.

Pelvic bladder surgery / the problem is the mesh implant / it is banded in the USA with more than 46,000 women in one state with complications of pain and can't walk / British women : you can report your own complication of the mesh to the MHRA and FDA getting their online forms.

Your pain is due to the mesh - don't settle for pain killers for the rest of your life / the only mesh implant survivors that are pain free are those that got it removed .... Search twitter listen to drug watch radio broadcast with Michelle Llamas mesh survivors - google Scottish mesh survivors - google tvt bladder mesh implants / OUR ONLY way to fight back. UNITE, REPORT, and take legal action IRWIN MITCHELL are helping me and came highly recommended / so far lived up to there name. Don't live on pain killers search to be pain free .... I'm now after 8 months of searching for answers going to get this removed and hope this message saves someone 8 months of pain . If you haven't had a TVT bladder mesh sling implant -DONT EVER / if you have get it REMOVED!! It cripples! :(((

[helenlegs11 Volunteer]

Hi Joy,

Fiona's advice is exactly what I would suggest too. I would also say please don't even think of going to anyone else, they just don't have the knowledge and you could end up with a ridiculous medical history that potentially puts you in a 'malingerer or mad' category.

There is Dr Natasha Curren who works alongside Dr Baranowski too.

Take care, and hope you get it sorted.

Helen

[Joyliz in reply to helenlegs11]

Hello again Helen,

I found you at last on here. I was going round and round the internet looking for UK people who knew the problems with getting PN diagnosed, that I forgot to save Health Unlocked in my favs.

We`ve spoken at length and I`ve valued your advice. I think Dr Baranowski or Dr Natasha Curren are my best bet. I really believe I`m going to have trouble getting refered, do you know if I can do a self referal?

If not, I`m going to insist my GP does, but first I`ve got to find my assertivenesss

thanks again.

Joyx

[jacquieb Volunteer]

Hi Fiona

What surgery did you have in France, decompression? if so was it successful? I too have been to Nantes for assessment, but didn't go back on the basis that they thought it wasn't pudendal neuralgia, diagnosistic lidocaine innjection indicated this. You probably had this done with Dr Riant? My diagnosis was more of Maigne's syndrome, but alas not much can be done and still stuck with the wretched nerve pain. Having said that I have found some fantastic emu oil that helps me no -end with the sensitivity and dryness in the vagina, and compouned lidocaine from Welbeck Street this helps with the soreness. My two life savers., along with pregabalin, amitryptyline - weaning off of - co-codomol, and baclofen. Baclofen has also been brilliant and enables me to do so much more with my myofascial pain.

Hi Joy

I'd suggest you try to make an appt to see some of the Dr's recommended above, I have seen Dr B on at least six occasions for nerve block injections, but not one of the helped me, In my opinion, if after two injections, you have had no relief than I suggest you don't have anymore.

Medication can help you through this.

[FKSW in reply to jacquieb]

Hi Jacqui,

I had right pudendal decompression surgery this year and the left the year before. The left has been very successful, and it's too early to feel the benefit of the right, however, the operation itself was successful. I did have diagnostic nerve blocks with dr. riant. I hope they find something they can do for your pain.

[Joyliz in reply to FKSW]

I realise your reply is to Jacqui, and sorry for butting in. You`ve answered my question I asked you above- that`s really encouraging news, thank you.

[JudyRentz in reply to Joyliz]

Joy,if this is truly pne,there is no mental,herbal meds or any physical therapy or exercise that helps..I did them all. I and my Dr feel very hopeful.my surgery was three wks. Ago,not horrible pain afterward and MY worse than death pain has not returned...I suffered and searched for 7 years,most in bed writhing because drs.didn't know to tell me there was help..Judy r

[She1 in reply to JudyRentz]

Can I ask who did your surgery and was it in England or France with approximate costs please.

She1

[She1 in reply to FKSW]

Can I ask where you had your decompression surgery please and by which entry method and approx cost please.

[Joyliz in reply to jacquieb]

Thank you jacquieb, I believe my next step is to see one of these doctors. At the moment pregabalin is acting like a miracle now that the dose has been increased to 300mg per day. I`ve read and seen by other posters that early diagnosis is my best bet to stop further damage, and I really want to stop further damage. If I`m given nerve blocks and they don`t help, I`ll remember your advice-thank you.

Perhaps medication is already calming the nerves enough to heal them? I really don`t know what to think?

I hope you`re getting some relief from the Maigne`s type pain.

Joy x

[kate81]

Hi to you all

I've just been diagnosed with pudendal neuropathy by Dr mello in Manchester and I am absolutely terrified I'm 32 and I feel my life is over. I've been in constant pain for 7 months in my vagina which started after sex with a new partner which I don't understand. Dr mello thinks my constipation has caused it. He wants to give me vagina nerve blocks but I am petrified. I'm currently taking pregabalin 300 and nortriptyline 40. My pain seems to change with my cycle. I have seen 4 physiotherapists who said it wasn't pn I'm so confused. At the moment I feel like jumping under a train my life is over. I've lost my job I was long haul cabin crew which I adored. My boyfriend left me and my house which I just bought is being repossessed. I don't see any future if this is it forever. I wanted a husband and a baby and now ill never have this. Please help

[PPSN_JudyB Pelvic Pain Support Netwo in reply to kate81]

Kate,

Are you doing anything about the constipation ? this could be making your pain worse. There are lots of women with pudendal nerve issues who have had children, so don't give up. Does the pain worsen with a period ?

[JudyRentz in reply to kate81]

There is life.my pne drove me to thinking there was nothing but to die...Internal blocks help for a while....never let drs.. Do this while you are awake..you can't bear it.however,there is no need to be scared,now,one can find hope and help....read all the above..you must find a specialist,no matter what it takes..don't waste time on anything but! My YouTube might help.judy rentz pudendal neuropathy.. Prayers for your pain ,Kate

[kate81]

Im taking movicol for the constipation and take lactulose and drink prune juice. This has been a problem all my life. The doctor said it has permanently damaged my nerve so I am devastated. The pain does worsen during my period. The pain started with sex with a new partner which was in suppose much rougher than my last partner of 9 years. I'm in a really bad way lost everything and the person I was. Have you known anyone where constipation is the cause? I know my pelvic muscles have always been tight as I've always struggled with smear tests and sometimes with intercourse. I've had so many conflicting diagnosis I'm totally confused.

[JudyRentz in reply to kate81]

Your bowel and period problems sound like me all my life,not normal. My specialist said they are linked.constipation does make you hurt worse with pressure.in Us there is laci lebeau,walmart,and a new drug for blockage,linsess,use the mild at first,I did everything to not become septic...we must go...enemas came back as plain water since my muscles were so tight.add this to the nightmare...be hopefu....you can get help. Judy r

[flower9power]

I had bladder/bowel prolapse surgery 2012 been in a lot of pain been in hospital a bit had tests couldn't find anything surgeon said pain was from operation now saying it isn't my bladder/bowel isn't working am constipate feel like giving up had botox and nerve block made it worse can anyone help me feel so alone I live in new zealand

[JudyRentz in reply to flower9power]

Read these replies to joy. Don't try pschy or physio,holistic or new age medicine.you must go to the source......Judy r

[JudyRentz]

Joyliz,im in the US so most of the med names,I don't recognize.........however,I do know my pain.you must find an experienced pelvic pain specialist.here so few treat any pudendal pain or want to learn...if you truly have this,it will get worse.for very mild pain,800 IB with a CLONAZEPAM will ease.Gabepenten is a continual muscle relaxer,you won't feel as if it does anything...I fought,but,had to give in to morphine and opium....PN is a nightmare.....don't waste time. Or money on other drs. And NEVER let anyone do nerve blocks while awake..Internal blocks do relieve for a while,you could not bear these while awake....I just had pd entrapment surgery and after 7years,mostly in bed and writhing..I would have gladly done it in a second but,no drs knew of it!!!!!! I'm on my way back and up..You would be helped in watching my YouTube video,,Judy Rentz pudendal neuropathy......I am so thankful for this site since I had no one to tell me and many drs.didn't have a clue...... I feel your pain and am so sorry ...JudyR

[carliek in reply to JudyRentz]

Can you purchase a product at Walgreens named Miralax in the USA? Ask your pharmacy to look it up and purchase it under another name. It is a softner and absorbs water. I take it in orange juice each a.m. and I avoid pain killers which will constipate me and become habit forming and will be xxd to get off of them; it is just another problem. Try a warm sitz bath to relax in; prop the feet up on high pillows; do stretch exercises if the doctors say it is okay - very slowly; relax mostly; yoga. constipation is very uncomfortable and is responsible for my PNE I think. So did Mayo Clinic. Carlie

[mags41]

Hi ive had same problem for 4yrs..Im on tramadol,paracetamol and naproxen..None are easing ny pain..Ive seen several physios,docs,gynos and orthopedic..Ive had vaginal scans and MRI which hav all been clear..I jst got told i cant be fixed and to attend pain clinic as ther no diagnosis for my pain..Im new on here and hiping to find that bit of hope that ther is someone who can diagnose this and help me as pain severe..Thank you..xx

[carliek in reply to mags41]

I am from the USA and went to France in 2002 to have PNE surgery with 10 other Americans. There were no doctors here to do the surgery and few to diagnose it. One person had it for ten years and finally had it diagnosed - her husband was chief of surgery at a leading hospital in this country. We were a hundred years behind. We drive cars and do not ride bikes and do not have the bide accidents to work with . Some had insurance that would cover it and some did not. It was about $2000 medical for the surgery,etc. We all had to fly over, stayed at the same place, ate what we could find and kept our clothes clean, etc. and lived. I know the price has gone up, but by no means is it the price of the medical care in the USA. We had adequate care and all of us had check ups and were in very good health when we went over - no major problems to contend with. None of smoked, drank heavily or had any problems of significance. Pretty dull bunch. Male/female 20's to 65. Pain ranged all over the wall. One person cannot judge another ever. Pain is pain. We needed to have had our PT already in line at home and did not. We were not aware that it was vital to our getting better. There was no internal PT in my state (Arkansas) at that time. The PT is paramount to getting well. Without it, a person will not get better. It will if it is done the correct way and it take over a year, twice a week. A lot of internal work, slow and steady. This is done for male/female. Many people have gotten well in this country, thanks to the surgery. There are botox injections to the pelvic floor to relax the muscles for those that do not - they last about three months and decrease pain to a manageable amount. People have to fly across the country for those. I hope

this helps you some - what we find in the colonies. Carlie

[Poppy26 in reply to mags41]

Hi mags

How are you doing and have you managed to see anyone? I saw a succession of specialists and pain management drs before finally I saw the right person and was diagnosed with bilateral PNE· I have recently had surgery and now in recovery· I am uk based and happy to answer any questions if I can help at all?

Take care and best wishes

[Aleksandra in reply to Poppy26]

Hi Poppy26, please let me know who did you see? What were your first symptoms? I have just started to look for answer what is the cause of the pain and I don't know where to go. I googled the symptoms and found they correspond with PN. My GP didn't know about the condition however said that if it is a nerve then he can prescribe neuroleptic drugs but I would like to find the cause first before taking such medication. I have on and off burning sensation in different areas from coccyx area to urinary track end and mons pubis. Additionally shooting pain into all different point in perineum. Additionally pain in anus - that started as feeling of tense muscles, but now it is just pain. Please help with advise where shall I go to have it treated?

[Matilda1304 in reply to Poppy26]

Hi Poppy how are you since surgery? I live in Australia and hope to have surgery soon .Thanks Andrea

[Cincy]

I did something similar, found out about the pudental nerve myself. Got a nerve block as a diagnostic test and immediately got relief and my answer. Sad no doctor or PT went researching for answers on my behalf. I am a psychotherapist - I continually look for answers with my patients. Not happy with the phyiscal medicine professionals they see body parts and symptoms I look to try and see the whole person.

[mcpip]

hi everyone,

I just have a question to understand if this is my issue,

Dose anyone have problems with sexual function i am having issues where i feel as though I'm having a pulling in the inside of the vagina as well as the other symptoms of PN but the most troubling is sexual function, this causes me to not able to be physical with my partner due to this as it give a loose feeling and i feel as though i have no strength is this something to consider? a symptom with PN