How I cured my vulvodynia

Hi my GP, who is quite knowledgeable about vulvodynia because she was the only female dr in our local surgery for sometime so saw all the vulvodynia cases, told me that she knew of women who had given birth while suffering from vulvodynia. However, that was all she told me. I’d also like to know more. Firstly, did they have vulvodynia while trying to conceive or did it come on during pregnancy? If they did have vulvodynia while trying to conceive, how did they bear the pain of intercourse? What was it like giving birth with vulvodynia? How do the preganancy and post pregnancy hormone levels affect the pain?

I would like to know this too. As mine doesn’t hurt with intercourse I just want to know if I will be able to tolerate the pain for 9 months. We are thinking of trying for a baby and I really don’t want this to get in the way of it.

Mine didn’t hurt during intercourse, just the next day. It was provoked vulvodynia with a delayed response. I have read that many women report that actual intercourse doesn’t hurt but afterwards the vulvodynia is worce? Is this the case with you? If you want to fully recover, you should really stop anything that aggravates the nerves. Remind me - what is the cause of your vulvodynia? Do you know? If it is due to deeper nerve issues, rather than skin surface nerves that might explain why intercourse doesn’t aggravate your pain (or does it albeit a delayed aggravation?). Of course, I would not want to put you off having a child but if your vulvodynia stems from a problems with the pelvic nerves (e.g. misaligned pelvis, damages or trapped pelvic nerves) carrying that extra weight while pregnant may make things worce and it may be advisable to sort out the nerve problems first.

So, today was one of the bad days for me. I got this like random pulsating pain (at first around my pubic bone/pelvis area) and now i feel it directly around my vagina and lips, and I’m not sure what to do about it. Does anyone else have the same thing? It’s like this random pulsating sensation combined with slight burning. It comes and goes for a few seconds at a time. Is it because of the nerves?? This is so frustrating, one step forward and two steps back. I was hoping I made progress

Hi Clariver, nice to hear all the things you have tried, I have had this since November just over 3 months, and I am just so fed up with it.  I am surprised they said to use diazepam as when I had an episode of depression 3 years ago, my GP initially gave me 3 days of diazepam to calm me down, but when I went back and asked for more, as they were brilliant, he said he couldn't prescribe me them as they were extremely addictive, only to be used very short term, no more than 2 weeks, and put me on to another anti depressants.  I am on Nortriptyline and now on 20mg but no bad side affects, how much a dose did you reach before getting any bad side effects?  I am hoping to begin course of acupuncture next week also, as so many people have said it helps.  Will try anything to be honest.  Doing yoga for pelvic floor every day and a Mindfulness meditation cd every day which really relaxes me so much, and funnily no pain at all whilst doing it, so nerves must be relaxing too.    Are you pain free almost now?

Hello Linda, and apologies again for both my bad typing and the predictive text!  My GP was not keen on me taking Dazepam, but as the Consultant Dermo lady said to take it, he has agreed!  I have come off it after two months with no problems.  Things are improving, and I am still very careful to asses how much sitting I need to do each day, and if necessary I juggle things.  I rest after lunch most days and do the mindfulness app then.  If you find meditating helpful do try the headspace app, it has lots of different programmes, and I find the Acceptwnce one very helpful.  Diazepam suited me as I had used it occasionally before for my dodgy spine, and back pain. I was not on a high dose of Nortriptiline but it caused to have a hand tremor, so the docs decided not to go down that route again..... I haven't ruled it out though if I need someone else!  You do have to take control of the situate as y know best what suits y and what doesn't.  I also have VA, and was given creams and a less art for that which cause mega flare ups,  but everyone is different, so you just have  to keep trying different things to find out what works for you.  I was diagnosed s year ago with pelvic floor spasm, and so went to a wonderful pelvic floor physio...... Difficult to find but use the Internet.  I used the headspace woo over the last year too.  Now keeping fingers crossed that I can manage using the diazepam as a fall back, and have had nearly two weeks off it full time.  It worked for rm, is allI can say.  There are other muscle relaxants too, but you would need to discuss with a doctor. the nerve damage to the vulvs, cause Unknown, needs muscles in the area to relax so as not to wind the, up, and given a chance to settle.  Also it gives the brain time to get used to being in comfort mode and not in panic mode!  I was also told to try's sitting each day on different surfaces for even s few seconds, to help e brain calm down and  recognise comfort rather than danger.  There are several good books on pain and the brain and reading a lot about that helps to understand what is going  on.  I do hope things improve for you...... Certainly this thread is very useful and would make a wonderful self help boo!  Hopefully you can read this despite any more typos!  Best wishes for a full recovery..... It tickle time but it will happen.

Tickle time!!!  Equals ...  It will take time!  Made me laugh snyway!  Hopefully the eyes will improve soon!  Also higher up the message ... Less art equals pessary!😂😂

PPS...... I do think it is vital to get to a medial specialist in the vulval area, whether dermatologist, physio, acupuncture, etc.  I had to keep going back to the GP with details from the Internet, and he was reluctant to send a referral, but eventually did.... I saw the London lady dermatologist on the NHS at Guys hospital..... Google consultant  dermatologist vulval area, and you will find her.  There are others too.  I was told by at least six doctors  that there are no dermatologists specialising in vulval skin!!!  There are!!

Hi Clariver,

Thank you for sharing your story. 

Really glad your pain and burning has now turned to just a dull ache. Sounds like you are on the road to recovery!

I have just gone up to 20mg if Amitriptyline and to up to 30mg if needed.

Like you, creams made me have really bad flare ups! Im so scared to  even try coconut oil! So for now leaving everything to calm down again.

Im starting womens health physio soon, i cant wait!

 Im going to try the head space app aswell. Thank you x

Hi Clariver, yes predictive text does get on your nerves at times, too clever for its own good.  Hope your cataract op goes well for you.  Hope you don't mind me asking but have you gone through the menopause?  I went through several years ago.  It does annoy me that the GPs think they know better than the specialists, my Gynaecologist wanted me to take Nortriptyline but GP wasn't keen.  Good to know about the diazepam and no side affects after 2 months.  Will keep that in mind if the Nortriptyline doesn't work once dosage increased.  I do. 50 minute Mindfulness CD which is just so relaxing, I almost fall asleep, almost like being hypnotised.  I am looking on line for a couple more so to vary them a little.  I also have VA which is being treated with Vagifem every night for a month, gradually reducing dose, and YES lube every morning which has sorted out that problem.  But the Vulvadynia began before I started on the HRT.  Do you take anything for your VA?  I think mine is nerve related causing the pain, and stinging and sometimes tingling too.  I sit on a donut cushion in the car, and at home, which I can bear for around an hour max, couldn't envisage sitting on anything hard yet.  I am seeing an acupuncturist Friday with a view to booking sessions, she said she has experience of helping others with Vulvadynia so am hopeful this will help lots.  The referral to specialist by my GP was almost 2 month wait so I decided to go privately and saw one within a week, and have another private appointment with her in March.  She knew straight away that it was Vulvadynia and was really kind and helpful (I know I was paying for that!!).   Last 4 days have been a lot better pain wise, until this evening, started getting pain in anul passage, which was annoying as thought it was beginning to get better.  Best wishes to you also that you carry on getting better and better, hope we all do, it's a miserable condition.

Thanks Linda and Hay for your message.  Yes I've been through the menopause so VA is part of all the joys of getting older! Two other thoughts are that there is a good site at pelvic Physiotherapy dot com.....hope that gets through..... With a list of UK wide qualified physics, also excercises and helpful advice.  Another teo apps I use for sleeping and for deep pain relaxation which are both very helpful are by andree johnson.....hope these are useful too.  There are also very good cushions in the UK from putnams....if you need more details please contact me privately.  And Hay, when trying out something new in the vulva, I start outside, then work my way in over a couple of days, and that way way if it doesn't  suit you only get a minor flare up.  Coconut oil on the whole seems to be widely tolerated, and if you can use it  it might be helpful.  Keep smiling!😊😊

Sounds as if you are being very pro active Linda, and I'm sure you will get there.  Yes, I am past the menopause so VA is part of everyday life!  I have sent another message but it is being moderated, so will scratch my head and try and re  word it!  All the best.....

thanks Hay... So glad you have an action plan.  I found being diagnosed after 18 months a great relief In some ways, as finally someone has listened, and believed me, which vindicated the many hours of research on the Internet!  GPs do not on the whole like their patients telling them what is wrong! Good luck eith head space, I'm sure you will find it helpful.  Another useful app for deep pain relaxation is by and-rew john -son..... My last effort eas moderated, so hope you can read between the lines!  All the best.,

thanks Hay... So glad you have an action plan.  I found being diagnosed after 18 months a great relief In some ways, as finally someone has listened, and believed me, which vindicated the many hours of research on the Internet!  GPs do not on the whole like their patients telling them what is wrong! Good luck eith head space, I'm sure you will find it helpful.  Another useful app for deep pain relaxation is by and-rew john -son..... My last effort eas moderated, so hope you can read between the lines!  All the best.,

Sorry Linda, one last thing is, there are some good cushions you can buy online in the UK via put nams cushioins......  I tried putting the name in earlier but it was modified!  

Thanks Clariver, the link was really useful, nearest to me is Bristol but I will bear this in mind if the acupuncture doesn't work for me.  The demonstration exercise was good too.

Clariver, I also have a good cushion, it has a hole in the middle so takes all pressure of the painful area, it is my lifeline and travels everywhere with me, be it, counselling, GP or visiting by car.  

I do the same. I put a tiny amount of the product on the outside, wait for a bit and if I feel any stinging / burning from the product I wipe it off immediately with coconut oil.

Hi Linda, if Bristol is nearby, then I can really recommend debbie dillon in Wells.  She has helped me over the past year.  A really lovely lady and s brilliant pelvic physio.  Good luck.!

Hi Clariver, thanks for the recommendation, I could get to Wells probably.  Prefer that to Bristol as Bristol is so busy and we hate driving there.  Is your physio on NHS or are you paying for the treatment yourself, if so do you mind me asking how much she charges per session.  I will try the acupuncture first but if not successful I will try her.

Hi Clariver, I just noticed you went to Guys Hospital in London also, was that before you went to the specialist in Wells that you recommended to me?

Hello Linda.... You would need to contact Debbie for up to date charges.  She does work in the NHS, and I saw her privately as was not in her area.  I started seeing her just over w year ago, until late last year.  The pelvic floor spasm was then sorted, but still suffered problems with  sitting, and burning etc, so was referred to the London dermatologist ..... Took nearly three months to get an appointment on the NHS at guys.  So I finally saw her in December last.  I think there were to issues, sort of combined.....pelvic floor dysfunction and vulvodynia.... Difficult to know w hich came first!  Chicken and egg.......good luck and best wishes. 

Hi Clariver, how are you getting along now?  Just thought I would let you know I had my first acupuncture session yesterday, it went well.  She explained that a lot of my "channels" are blocked causing the pain but she didn't want to just treat the pain, but rather the actual cause of it so she put bout 12 needles in my knees, ankles and toes and left them in around half hour, wasn't painful at all.  I did notice whilst the needles were in that I had a really strange smell, like a sort of burning smell, it was so sting that I thought it was something in the room but it was only me that could smell it.  It stopped when the needles were taken out.  She said I had a lot of "damp" in my channels and asked if I had congestion which I have had the past two weeks, so advised no fresh orange juice and no bananas, both which I have every day as these cause congestion as well as dairy products which I rarely eat now.  It was strange as the past 4 days I have had hardly any pain at all but when I got to the place the pain came on really bad, and all through the session, which tells me it's made worse by stress, when I got home the pain has gone.  Not sure I had much change after this first session, she said it may take a few sessions to notice a big difference so hope she is right.  I have another appointment next Tuesdsy for an hour.

I one the the acupuncture works for you. I used western acupuncture which is not based on “channels” but the actual structure of the nervous system. Thus, needles were inserted at points near to the nerves running from the spine to the vulva area. A 30min session with electricity passing into those needles would leave my vulva area numb and, as the numbness gradually faded after a session, noticeably reduced pain in that area.

Hi Suki,

After reading your comment im defos going to look into if the acupuncturist i found on Harley St specialises in western acupunture.

Thanks  

Hi Clariva, just thought I’d update you and others on my Vulvadynia.  I think I have now finally got rid of it.   I have now stopped the Acupuncture as my acupuncturist said I was much better and all pathways clear now.  I went on holiday for the past 2 weeks and felt wonderful, no pain at all and I completely forgot about my condition.  I now no longer do the  meditation or yoga, I have gone back on to a normal diet almost.  I have stopped using creams after using the loo.  I still use my donut cushion but can sit on hard surfaces ok now.  I still use the Vagifem and YES lube regularly.  Also I did go from 30mg if Nortryptyline to 40mg and that is when the pain went completely.  After 3 weeks pain free I decided to reduce back to 30mg as the Nortryptyline gives me awful constipation and has made me gain a lot of weight, almost a stone.  I didn’t want to gain any more, the website does say it causes weight gain, and a friend of mine has also gained weight on this medication.  I was ok on 30mg pain wise but still constipated so last week decided to cut back to 20mg of Nortryptyline which seemed ok for 4 days but now there is a little pain, nothing unbearable but it does prove to me that it was predominantly the Nortryptyline that got rid of my Vulvadynia more than anything else.  If it gets worse I will have to increase up to 30 again.  If not then I will stay on 20mg for a couple of months and them try 10mg. It just feels so great to have finally conquered this awful condition.

To be honest I preferred the constipation and weight gain to the pain. How long after you considered yourself pain free and back to normal did you drop the nortriptyline dose? My consultant dermatologist told me that if you start dropping the dose too soon the pain will return and to wait at least 3 months after being pain free before doing so.

Oh, and well done! And thank you for posting your success on here. It is important for others to know that they can be pain free again.

Hi Suki, the constipation I could cope with, just, but I had put on a stone and none of my clothes fitted me, which got me very depressed.  I had been pain free on 40mg for about 2 months so decided to cut back to 30 which was fine, no pain, last week I cut to 20mg, ok for 3 days or so but today it is getting painful again, so tonight I shall go back to 30mg again.  I thought once the pain has gone it wouldn’t return, but it looks as if it’s inky the Nortryptyline doing its job.  I guess as you are still on your dosage, you won’t know if it’s really gone or just the meds keeping it at bay.  Shall have to just diet more and exercise more.  I am hoping to return into the office Tuesday so want to be completely pain free.

I have slowly and steadily put on weight despite becoming vegan and exercising regularly now. I couldn’t understand it. Thanks for reminding me it us a side effect if amitriptyline!

A stone is an awful lot for me as I am normally 9 stone, and now 10, highest ever been.  I am also eating a lot less but not been exercising, so going to start now.  I increased last night to 30mg Nortryptyline again and feel better already.  I think the Nortryptyline slows down the bowels and gut, so more food gets absorbed into the body as fat.  I may start on sachets if laxative I have to help it speed up.  But at least as you say, the pain has gone, it looks as if it’s mostly the Nortryptyline that has helped, I am not sure about anything else now.

But it was worth trying everything because different things work for different people. Also the acupuncture works well in combination with nortriptyline/ amitriptyline so having acupuncture may have accelerated the recovery. I had read that these drugs give you greater appetite, so you eat more.

Hi Linda! amazing news, so happy for you!! Can I ask you how long it took to notice the pain was gone once you upp'd the nortriptyline to 40mg? I just got up to the higher dose my doctor wants me at, it's been three days now. Weirdly I saw marked improvement the very first day but these past two days I feel like the pain has gone back to its normal level. Maybe it was just all in my head that first day, also it was a weekend day so I wasn't sitting at work all day like i have been the past two days.

Hi Ally

yes it’s such a relief to get rid of the awful pain.  I think it took a week or so before I finally realised I was pain free on 40mg of Nortryptyline.  When I went up from 20 to 30 the first couple days I felt ok, but then it came back a little, not as bad, so that’s when I decided to up the dose to 40mg, and that seems to be the correct dosage to maintain pain free for me.  It may be higher for you, perhaps you may need 50mg, my specialist said it’s ok to go to 75 and everyone is diff, you have to find the right dose.

But I made the mistake of feeling so normal again that whilst on holiday I decided to decrease back to 30mg, and was ok for a week, so decreased again to 20mg and was ok on that for only 3 days before the pain started again, so I quickly went back up to 30 sgajn. I am still on 30 and it doesn’t quite feel as good as when on 40mg but I think I can put up with it as it is.  The only reason I wanted to decrease was the constipation it causes and also weight gain.  So that proves to me that it hasn’t gone completely, it’s just the Nortryptyline keeping it at bay, so may have to continue on 30 for another few months yet.

i went back into the office for the first time since the start in November, as up until yesterday I was working at home.  I found yesterday ok from 7am until about 11am, then it got a little painful, so I went home for the afternoon.  Today I worked 7am until 12 and was ok.

Hi Linda! Yeah definitely stay on it for a couple months, then hopefully it will finally be gone for you! I've been on 50mg for 8 days, I have decreased pain but still not 100% pain free. My doctor said to give it two full weeks at least. I"m really just left with a discomfort, the sharp pain is gone though, I'm more just burning/stinging sensation now. I hope I get rid of this thing once and for all soon. it's so awful! 

My consultant said the dosage needed is different for everyone, and I could safely go up to 75ng if needed, but I found 40mg was good for me, pain free completely.  I went down to 30mg and it’s ok, but not as good as 40 but it’s bearable and I can walk a long way now and sit fir about 5 hours.  I don’t want to increase back to 40 as the weight gain is a nuisance and I got very constipated which I understand doesn’t affect everyone.  If after 2 weeks on 50mg if I were you I would go up to 60mg.  I just feel a little tender now, I wouldn’t call it pain.

its a really horrid thing to have, I hope you get better soon, I know what you are going through.

OKy yeah I will probably go up to 60mg soon, to see if that finally does the trick. 

You mentioned sitting at work all day, have you got a donut cushion, it’s one with a whole in the middle?  If not I really recommend you getting one, mine goes everywhere with me, even now, it’s just so comfy, takes the pressure of the painful area.  I use mine st work, in the car and even in a bus.  You can get them on line, mine is a memory foam one with a lovely tartan cover over it so it just looks like a normal cushion.