Hello,
I started getting bad nerve pain diagnosed as vulvldynia about 4 years ago...was put on amitriptyline 50 mg and lyrica 300 mg .... for 2 years...I was then able to wean off them and had 1 year and a half of no pain whatsoever (complete remission). It was as if nothing ever happened.
I have had symptoms return 3 weeks ago and am now back on medication ..has anyone else experienced this ? I can't find an answer ...thank you xx
Yes. From the many articles I read, it can return. It seems it is also genetic. My sister developed it last year, She was treated early, so it subsided. She says every now and then, she feels it a little.. I was not diagnosed early. I have been in ever increasing vulva pain, sometimes it's sore, sometimes it's just pulsing so fast and painfully I can't stand it......I've had it for 3+ years. I'm lucky, mine goes away at night.....but begins again the next morning.....some days are worse than others. I use ice packs, thickly wrapped so there won't be any frostbite. It's truly the one real thing that has helped. The Amitriptyline, I'm on 1800 mg of Gabapentin.....a hideous drug but it helps with the pain......I'm having a wireless stim unit put in soon. On the trial run, it helped a lot. I never even imagined this condition, Mine began after I got Eye Shingles. Before that, I hadn't been on any antibiotics or antivirals for over 20 years.....I don't understand. I hope this stim unit works.....everything else has not controlled it.........I get very desperate...............
Hi jquintile
May I ask where you are having the stim unit procedure done? I asked about this at the ucl and they said I was too young (at the time I was under 30). I've had vulvodynia for 14 years diagnosed. Longer thinking about it as took three years before diagnosis.
My endo consultant is now looking at surgery in the nerves as next treatment option.
Thanks
I don't know where you live. I live in NJ.......I am being treated by Douglas Spiel, MD in Edison, NJ. He is doing this test trial, so the surgery is free. It will be done at the New Brunswick Surgery, in New Brunswick, NJ. It is an experimental stim unit......wireless...... Dr. Spiel is an amazing doctor. He considers his patients family......He gave me his cell phone number and will answer on a Sunday. We did a test trial where he put wires into my sacral nerve ganglia on the left side. With wires and a control, it relieved some of my pain.......so..............I am waiting for the rep from the company that makes this device to get back to NJ...his first child is being born at the end of May, so I certainly couldn't ask him to come sooner..for me......then Dr. Spiel will put wires into the right side of my sacral ganglia and then, I will have a control unit..but it's all wireless. I hope it works. I can't stand the pain much longer. I am usually very active....kayaking, hiking, swimming......now, I am reduced to lying in bed because the pain goes away then. The Gabapentin made me gain weight which seems impossible to lose....I'm down to eating very little and still I only lose a pound or two......very frustrating. It's called "Stim Wave". they are located in Florida. You can go to their website at stimwave.com. Or tell your doctor and he can call or go to their website about the device.....It's not on the market yet....but maybe your doctor will be willing to do some guinea pig tests...and you can be a guinea pig like me......if you're in the UK, you'll have to contact the company (or your doctor will) about any options there. Good luck, I'll let you know if it works.....but that won't be until the middle of June....... 
thank you, sounds great! Medication is working for me so I don't need a SCS but I keep reading it's great if you do need it ...
When I took lyrica some years ago it made me gain a bit of water weight, about 6 pounds ...
hi I'm really sorry to hear this... did you ever try cymbalta or lyrica? Lyrica was very strong for me, it made my entire body go numb at first, my tickle nerves were numb too, you couldn't tickle me... I also read about gabapentin cream 6% ...
When I had the remission after weaning off all meds it felt as though nothing had ever happened and resumed a normal life...
Really sorry to hear you're in discomfort..I know I read a LOT of stories about SCS implants working beautifully and it sounds like a great treatment!
Hi Mary hand
Have you had any other treatment offered like physio under a women's health physiotherapist?
I've had vulvodynia for 14 years. That's interesting and amazing you had no pain for so long. Is there any triggers you can identify? For example I've had a stinking cold so now my vulva is flared up. Could it be something like illness or clothing or soaps irritating it? I've never heard of it just going so something must have triggered the pain to come back so bad. Hope this helps.
Hello..thank you for your reply. I have no skin problems, never did, I know some cases of vulvodynia start after yeast infections and develop sensitive skin... so coconut oils or creams wouldn't help me... I went to a pelvic physio at St Thomas's. years ago... great lady and very lovely but she told me I have no muscle tension (at least internally). I think I developed this nerve pain as a result of years of severe anxiety and depression. But in this year and a half of being pain free I had no nerve symptoms at all so how can this be nerve damage? I wore skinny jeans, hiked, ran, did sports ...I never had numbness or loss of function. Nerve damage cannot work like this, right? I don't have triggers and never had flareups, just persistent pain or discomfort. Diet doesn;t do anything and I never had burning. Right now I'm back on amitriptyline at 20 mg and I mostly get mild symptoms like crawling under the skin and buzzing and feeling inflammation when there is none there. This relapse was triggered by stress I'm sure, I'm graduating soon and I am stressed about finding a job and moving to another country. I will go back on lyrica when I can to try and "reset" my brain to understand there should be no pain. I also do desensitization every day and tell myself there is nothing wrong with me ...I started reading the TMS forums, they're a lot more positive... and nice to read ..was just wondering if others have gone through this..
How are you doing now? I have had it off on and on for a few years and it's been mostly on for the past year. I haven't tried any medications yet because I'm kind of nervous. Been researching a lot about neuroplasticty which always makes me feel better. TMS stuff, etc. I'm thinking of going on something tho. It's so nice to hear you were able to wean off and were fine. Do you get sleep on them? Can you drink on them? Thank yoU!
Hi emmybaby, I'm doing well, in full time employment and still on the amitriptyline, 40 mg..tried to wean back to 30 mg but had some electric shocks.. GPs in Uk are useless, I don't know why I pay so much tax for nothing, I tried reasoning with them that Lyrica is far better for me than ami, but they refused to put me on them..I literally don't care they cost 100GBP per box, not my problem, I pay huge tax every year.
if you can survive without meds then it means you have a mild case so that's good!
with amitriptyline you sleep whether you want to or not, it knocks you out. Sadly, when I weaned off them years ago (the first time), I developed nocturnal panick attacks and fatigue attacks during the day which had me bed bound... so yes, I had no vulvodynia, but instead my central nervous system was chaotic. These attacks have dissapeared now that I'm back on amitriptyline.
I can drink half a glass of prosecco on this medication, but in theory you should never combine alchohol and tricyclics, you can have severe problems.
When I was off the amitriptyline and resumed drinking I found my body could no longer tolerate alchohol well and I no longer got tipsy or euphoric, I only felt sick and had chest pains. The medication changed some things, but I have since lost interest in alchohol anyway.
I suggest you consult with a doctor whether you should start any medication. I also recommend modern generation meds like nortriptyline and lyrica and not their older counterparts. Do you use any lidocaine? I found it really helps.
I live a normal life, however, I can do anything I want except riding a bike which irritates my bartholin cyst past surgeries (the reason I have developed vulvodynia in the first place).
I did speak to a neuro in private, she suggested I have psychocomatic pain, however she didn't explain whether psychosomatic pain responds to medication or not. I have read conflicting articles and some books on this, alsothe theory for TMS is that it is pain which does NOT respond to medication, but mine did, so I'm left confused. I will try and see Wendy Reid next at royal free.
Thank you so much for responding! I think I do have a mild case right now. Ten years ago, it was horrible and a few months ago it was as well. I cried every day and developed panic attacks, etc. But overtime, my central nervous system calmed down and I am better able to manage. I am actually going to be a nurse practitioner so I am fascinated by pain science and may consider going into treating this kind of thing eventually. (First I will work in primary care for a few years.) I go back and forth about taking more medication because I worry about getting stuck on it. I do have lidocaine cream and it does help! I'm considering using it more often to see if it will help with breaking the pain cycle. I also take 10 mg prozac, but don't know if it does anything. I have been on SSRIs for years and it's hard to get off of them. That's another reason I'm nervous about going on a tricyclic---I already got extra serotonin in my body! Anyway, glad you are doing well! Sorry about all of your trouble trying to get off of your meds. But, maybe, it's good to just keep doing what you're doing if you're able to work and enjoy life. Keep me updated and let me know if you ever want to talk pain science. It's fascinating stuff and gives me so much hope! I'm reading explain pain right now and loving it. xoxo
thank you ...
you may find this article to be of great interest. I also read a lot about medication, neuroplasticity and pain science
theaustralian.com.au/news/h...
Have you read the brain's way of healing? This is from that book! Norman Doige wrote the book! It's wonderful!
yes, it sounds like you have a more textbook case of this...I feel for you...are you managing alright? xx
I had eye shingles and was on an antiviral drug for 8 months. A week after I stopped taking the drug....the vulvodynia started. I was also under an amazing amount of stress.....Personally, I think there's connection either with Shingles or antibiotics, antivirals...They completely wipe out your immune system and with shingles......neuropathy can occur.......I've been to 28 doctors and they all had a different opinion. I joined the National Vulvodynia Asso. You must pay them $45. to join, but they then provide a list of doctors in your particular area that treat this horrible condition. I'm not done doing research. One doctor, I saw recently, after examining me and talking to me...I kept asking for Amitriptyline, Pudendal Nerve injections.........he called me into his office and he said...Well, you know so much about this, I can talk to you like a doctor...The Pudendal nerve injections did not help, the new laser treatment did not help, Pelvic injections in my back did not work. that's why I'm really hoping this stim implant will work. for me, I never go anywhere without my ice packs.....I put a barrier in between the ice and my vulva.....it numbs the pain but is rather embarrassing in public......
really sorry to hear that ....I would of imagined if shingles would affect anyone it would be in the location of the outbreak and not a new location ... stress and anxiety really damage the central nervous system and you become vulnerable to these things ... I still refuse to accept I have nerve damage, more like dysfunction ...because nerve damage would not do well when not on medication ... but yes, antivirals and antibiotics can have these effects I suppose ... I'm sorry to hear you have burning sensations .... have you ever joined the vulvodyniasupport forums ? they provide a lot of information
no, just the National Vulvodynia Asso. I read some little article about shingles and vulvodynia. You are correct about any neuropathy from shingles...I think the combination of shingles and the drugs triggered first, my sympathetic nervous system and has now spread to my central nervous system. Yes, I've been under considerable stress for over 4 years now and the hits just keep coming....stress is a major factor.......
I understand ...I am certain you'll find relief !! do update for others ..it always helps to read other people's experiences
Have you ever read the TMSwiki forums? it has some interesting stories..it's about mind body connection
xx
Mary Jane, I remember you. I'm still suffering following childbirth. Meds help to a point but my brain has remembered. I have allodynia and am too scared to try deSensitisation. Does it help? Thanks
Hello I read on the pudendalhope forums that one user did this for his sitting pain. Firstday he sat down 1 minute, second day 1 minute and a half, third day 2 minutes..and so on ..he did this for a long time ( 1 year?) and he can sit down again without pain....our brains are plastic and nerves have memory, so you can retrain them to "understand" that something doesn't have to cause pain ... unless you have a doctor's diagnostic like diabetic neuropathy or something of an organic cause, nerve pain is most likely some kind of "shortcircuit" thing... even on the vuvodyniasupport forums there was one user who had pain from her episiotomy scar and she massaged it, did PT and took B vitamins and other things and she then said the pain went away ...
I had allodynia too 4 years ago ...I used 5% lidocaine ointment (something from germany called posterisan) and instillagel 2% every day and meds and it went away
Thanks for this. I found a cream in America called Recticare which is for piles but it's basically 5% lidocaine. I'll look the German brand up.
I hope you find resolution soon. If it went before, it can again x
If it helps, you can also buy an entire box of instilagel 2% lidocaine gel on amazon uk, it's 24 GBP. I haven't found it in pharmacies lately. UK is so bad at importing medication , I don't know why.. you can't even find BAYER dissolvable aspirin in pharmacies ..hmm
I have Posterisan AKUT, which is 5%.. it is safe to use on the vulva and gentle ...do keep in mind I do not suffer from burning or skin sensitivities so always do a patch test before x
I'm no expert, I just read a lot of different forums to get a more clear idea of what is going on. this is why surgery may not work for some people...pain occur in the brain, so you can cut out whichever nerve you want because the brain still "knows" it should hurt ...if this makes sense... UNLESS you have a clear structural problem diagnosed by a doctor of course.
Hi there,
I've been diagnosed with pudendal neuralgia, (which is a form of vulvodynia caused by the damage of the pudendal nereve)in Marseille. Before that I had been in the worst kind of pain for 3 months. Couldn't sleep, eat, constantly felt like my urethra was either being stabbed or on fire.
After 3 months it just went away, I just had episodes of "light" pain every now and again. Then it came back for another 2 months. This time I managed to get a diagnostic. I had a herniated disk in my spine pressing on the pudendal nerve.
After some research I found that bee venom helped a woman who had similar symptoms. After 2 sessions of bee venom injections in the spine my pain was gone, and remained gone for 3 years. Now it's back and I'm going to try the bee venom again.
My point is that if you have a disc hernia or similar spinal issues, something in your back may be pressing, at times, on your pudendal nerve. At least, I think, this is the case for me.
what does this have to do with my post? I achieved remission of 3 years using only medication, this signals there is some problem in the CNS like central sensitization.. I don't see how bee venom can help me but I'm very happy it worked for you! PN can be tough to manage
Because amitriptyline and lyrica can't be treating the cause, as they're they just there help with pain management;And because the pain subsided, this is an obvious sign that the nerve wasn't damaged, the remission of the pain suggests compression of the pudendal nerve.
(In my case the pudendal nerve was compressed by a hernia.)
If you haven't already and if you'd like to listen to some random lady's advice, I would visit a neurologist and get an MRI. (And bee venom is used to treat nerv pain)
I'm just putting my 2 cents as I know what life with that kind of nerv pain is like, and I know that there isn't much information out there, or too many specialists. Perhaps you've already gone through all the motions and I'm speaking out of turn, sorry if I am.
Hi, if you google the vulvodyniasupport forums, you will find a few other users who have had the same remission as me by using medication. Why does it work ? Because they interrupt the pain signals and correct whatever went wrong in the brain to create pain in the absence of damage. My pain started when I had a very small cyst burst and then it spread around to other nerves, including the pudendal. I do not have compression of the nerves, and an MRI cannot see nerves! At best a 3T MRI can see nerve roots and a bit more. Don't tell me about the so called Potter MRI, I do not believe her. At the moment I am back on amitriptyline and it's working yet again, along with lidocaine. I have a lot of other pain syndromes like TMJ and IBS, lower back pain and I think I may have central sensitization, either this or some obscure neuropathy
Hi I've had a similar occurrence of peripheral nerve pain. I have CIN or chemo induced neuropathy in the vulva region. After my last session of chemo I had persistant migraine..then along came the burning, scalding in the pudenda. Eventually I was refered to the pelvic pain clinc at our women's hospital. Rx opiod pain patches and Nortriptyline 50 mgs. I eventual weaned myself of these like you did. But it all came back again a few months later. So I am back on the the same meds!!! This time they don't seem to be working as well.... Very upsetting ... I also get similar in extremities toes and fingers numbness and pins and needles in my feet. But I can put up with that. The vulvadynia is the worst pain. So hard to explain to people too....also I too had to take anti virals for a long time. As chemo lowers you're Immunity. Never thought that would be the cause. I'm seeing a neurologist. And am to have an MRI next week on my spine not happy about it. As I'm told that it will take 90 mins!!! And get claustrophobic in that coffin like tunnel.
Not sure what the next step is re pain relief is either
Best wishes to you all
Sheila in oz
Hi Sheila, really sorry to hear about your nerve damage from chemo 
I think you can now try Lyrica or Cymbalta if the nortriptyline doesn't work as well ..it's very odd that it doesn't, other people have been able to achieve the same results when getting back on a medication ...hm...have you tried mindfulness at all? My medication worked better when I added mindfulness and stress reduction to it. Nerve damage does NOT mean you MUST experience pain, my poor mom has had a hysterectomy and despite her nerve damage she does not experience nerve pain, she does have numbness however. Doctors need to get off their lazy bums and start thinking of new ways to treat this !!
Hi, how long did it take for the Lyrica and Ami combination to start working 100%? I.e. pain free days.
Hi, amitriptyline took 3 wntire months to start working properly (e.g. at least 40% pain relief). Lyrica, which was added later, after I was left only with pain on touch, only took 2-3 weeks to work, it made my skin NUMB for a whole few days which was amazing. so, in total, it took 3 months and 3 weeks for 100% pain relief.
Bare in mind what started this problem for me were repeated bartholin cyst lancing/cuts, so a lot of trauma to the area by incompetent gynecologists. I still see them as entirely incompetent to this day and I never trust what they tell me.
I later had 1 year and 4 months without any pain and no medications. I suddenly had fatigue attacks and panic attacks, but apart from that no pain. The pain later came back after exam stress
I am only on amitriptyline 40 mg at the moment.
I recommend medications to any other intervention because pain is an output of the brain and it makes little sense to start having surgeries or god forbid pudendal decompression surgery.
There are a lot of combinations you can take, I searched through the french pudendal forums and I even found some users who achieved pain free with the use of anti-anxiety meds.
Thanks for your reply Mary Jane! I guess I'm just going to have to be patient, i've been on the medication for less than a month, an my OBGYN did warn me that it's not a quick fix. Have you been able to have remission again? I pray you have.
Best wishes
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