Vulval nerve pain remission and relapse? anyone else?

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

24 Replies

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  • 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.

  • Sorry auto correct.

    Should be maryjane!

  • 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..

  • 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

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