How I cured my vulvodynia

Hi Linda, you are not alone and you have come to the right place. If you look at my first post on this forum above you will see that it is possible to be cured and pain free, but it takes time and determination. There is no quick fix with these neuroseptive conditions. There is also no one cure fits all. It’s depends on you and the course of your vulvodynia. You need to find what works for you and stick with it and do nothing that aggravates the nerves. Other women have posted on here what worked for them. Like I said, you will see what worked for me at the top of this page, if you have any questions don’t hesitate to ask or private message me (private messages don’t get deleted by the moderator - they tend to delete references to websites and some product recommendations). First thing you need to do it get yourself a cushion with a hole in the middle and don’t wear underpants - wear baggy jogging bottoms or a skirt. I too work from home and when I had vulvodynia I went around in baggy joggers or a skirt with no underpants at home and I would kneel on my office chair infront of my computer. I couldn’t sit on a chair - that would aggravate the nerves and make the pain worse. But I would loose feeling in my legs. I was so pleased when I found a donut shaped cushion (hole in the middle) for women to use after childbirth. Like you, I was lucky that I worked form home and could go around with no underpants and sit on a weird cushion. I use the cushion in the car too.

Hi Suki, thanks for your kind information, reading all your messages has given me a bit of hope, as I am feeling I will have this forever and life won't be worth living.  I really don't know what caused it, as the day before I was out with a friend shopping all day without a care in the world and the next day I felt a bit of stinging, which has gradually got worse over last 2 months.  My GP initially thought it was menopausal, and gave my Ovestin and Replens, which didn't do much good, I went back and she referred me for an ultra scan, and a gynaecologist appointment.  The scan was clear, but appointment was end of March, so decided to book private appointment with a gynaecologist last week.  She immediately diagnosed Vulvadynia and recommended I change from Ovestin to Vagifem, together with YES, and also Nortriptyline starting at 10mg and increasing in a fortnight to 20mg and so on to see what dosage will help with pain. I was a bit reluctant to go on anti depressants but as I am desperate decided to give them a go.  She also mentioned about wearing no underwear which I do in the afternoons and evenings whilst in the house.  I also have one of those donut cushions you mentioned, which I have found invaluable to sit on for short periods, in the car and whilst working.  I also have been drinking as much water as I can, and doing pelvic floor exercises 4 times a day.  I have baths with no soap and use non bio detergent for clothes washing too.  I am going to try the coconut oil if I can find some in my local health shop.  Not sure what else I can do.  I am very interested in hearing about the acupuncture, it seems a lot of people think this may help.  How do you find a reputable acupuncturist?  Are they very expensive?  How long roughly did it take yours to go, after taking anti depressant and acupuncture?  I am unable to walk more than half hour without soreness and can sit for periods of half hour on my donut so I feel I am virtually housebound at the moment, none of my friends really understand what I am going through.

hi Hay, thanks for replying, I have absolutely no idea what started this, I keep racking my brain trying to think but nothing comes to mind, I do wonder if it stress related, as I have suffered from stress related things in the past, 2 years ago I has mysterious joint pain for 9 months, was sent to a mineral hospital for tests for rheumatoid arthritis but all tests negative, and in the end it just went as quick as it came, and I am sure it was stress related.  Do you know what started yours?  

Hi Linda, I'm one lady whose vulvodynia didn't appear until after menopause.  But I found that the cause of mine was dietary.  Turns out I'm sensitive to all of the solanacea group of foods: Potato, tomato, chilli, bell peppers (capsicum), tobacco (I don't smoke but second-hand smoke will set it off), eggplant, and goji berries.  These are all related foods and I only need a small amount to set the pain off.  My doctor recently diagnosed me as having an underlying Multiple Autommune Syndrome, and it turns out that my vuvlodynia is a symptom of this where my immune system sees the chemicals from the above food group as dangerous and overreacts by attacking my own tissues. It turns out that before menopause my liver was working more efficiently and was able to detoxify the chemicals before they were at a level that alerted my immune system.  Now that I'm older it takes longer for the liver to work and my immune system jumps in.  

Although I'm effectively cured of the vulvodynia so long as I don't eat any of my trigger foods, I am also having a lot of trouble currently because my immune system is stressed out by the horrible heatwave we're experiencing here in Australia.  Over the past two months we've had many days of over 40 degrees celsius and nights of around 36 degrees.  Due to heat stress I've come out with eczema all over my body as my immune system thrashes about.  

My doctor says that old age isn't for the weak, and he's not wrong there!  Although I'm only 57, I feel about 150, and am dreaming of winter!  If the cool weather doesn't arrive soon, my immune system will only leave an eyelash and an earlobe unaffected, seems like!

Minamii

Minamii

Oh, I meant to add, I'm sure you're right about the stress.  As I've said, apart from the main dietary thing with me, stress, particularly heat stress, often sets off not just ezcema but also joint pain!  When I was diagnosed as having Multiple Autoimmune Syndrome, it turns out that I haven't had a functioning thyroid since my teens.  So there is a cascade effect of unpleasant symptoms, many of which appear and disappear, as you found, as the immune system charges about causing trouble.  One of these "symptoms" was full-on Hashimoto's Thyroiditis.  This was undiagnosed by doctors until recently, but my specialist says that I have no thryoid at all, it's a miracle I was able to function and have a child, since one of the nasties of this is problems getting pregnant and carrying a child to term.  Other signs of Hashimoto's Thryoiditis are: chronic joint pain, chronic fatigue, trouble keeping weight off (without a thyroid you have no way to regulate body temperature and don't burn calories to keep warm, and conversely, don't sweat in the heat, which can lead to lethal heat-stroke, which I'm currently terrified about in our heat-wave conditions) and trouble sleeping.  

So I would suggest that you ask your GP for a thyroid function test, and don't take no for an answer!  Especially since you are now in the age group where women do get thyroid problems.  Also, ask him to do a work-up of your immune function, since if it's overactive it can lead to a lot of the problems you've stated.  My vulvodynia is essentially cured, so long as I don't eat any of the foods that set it off, there are a lot of stress-related things that can make your immune system hypersensitive and vuvlodynia could conceivably have a stress-related cause. 

Don't let the doctors bully you into thinking there's nothing that can be done, they are overworked and will prefer to hope that your problems will go away of their own accord.  Unfortunately we ladies know that is not the case and causes years of suffering.  My specialist told me recently that most GPs hear hoofbeats and think horses.  But in a number of cases there are zebras like us running with the herd and we need different care!

And good luck!

Minamii

Minamii

Hi Minamii, yes I had read that potatoes and tomatoes could cause the pain, so I have also started to cut out all potato and tomatoes from my diet, I don't smoke either.  I guess it's worth a try for around 3 months to see what happens.  I will ask my GP when I see him for a thyroid test, but I don't have weight problems usually connected to thyroid.  I think my joint pain was probably stress related, I had it 2 years ago, and prior to that 10 years before, and also 10 years back again, so 3 episodes with 10 years in between.  I agree the GPs just don't seem interested, try to fob you off as menopausal symptoms.  I am under a private gynaecologist at the moment so perhaps having to pay might bring better results.  I also had headaches continuous for a year, again stress, it just seems my body is trying to bombard me with pain over the years.  I am having 12 week counselling sessions at the moment to try and help me cope with my anxiety and depression caused by the Vulvadynia symotims.  So pleased yours has gone, it gives me hope, I would give anything to wake up one morning and be pain free.  Even going shopping for food is a hard task, as can't walk far without the burning and stinging starting up.  I am lucky my husband is retired and very concerned and worried, doing all he can to help, cooking meals, cleaning etc, which I am finding hard.  I tend to sit / lay all day, which is again a worry as I am not getting any exercise, and I normally love walking 6 miles or so.

Before I realized what was causing the pain of vulvodynia, I used to take antihistamines for hay fever, and found that they did give some relief to the vulvodynia as well.  Not a complete cure, that only came about once I fixed my diet, but it eased the symptoms a bit.  Also, I used virgin olive oil on the area, or else petroleum jelly also eased it a bit.  Soft cotton liner pads eased the chafing and irritation of wearing undies, the cotton pads can be washed and re-used, you can order them off the internet.  

Minamii

Hi Linda. It seems to me that you are doing all the right things. I too had counselling with a pschosexual therapist to help me cope with the pain. I notice that your gynae wants you to get up to 20mg amitriptyline. Lots of women have said the same. My gynae told me when I was on 20mg that that was enough. But I was still in pain. Then I saw a consultant dermatologist who specialises in vulva pain and had seen many many women who had vulvodynia (she ran vulva pain clinic) and she said in her experience 20mg was not enough - she said I had to be on 50mg-75mg. I managed to get up to 50mg (by slowly increasing the dose by 5mg every 2 weeks - increasing by 10mg gave me side effects) and it was only then that I began to feel that life wa getting back to normal. My pain no longer ruled my life and I could function properly on a daily basis and sleep well. But the pain was still there in the background and it was the acupuncture that finally freed me from the pain altogether. Like you, I used to wish I’d wake up in the morning and the pain would be gone, but every morning I was disappointed. I soon realised that that wasn’t going to happen - it was going to be a long and slow road - it took me around 2 years - but I made it.

By the way amitriptyline is no longer used as an antidepressant - it wasn’t very good and there are far better antidepressant drugs now. When is was used as an anti depressant it was in far greater doses than we are using it. It is now used as a nerve numbing drug - it dampens down the overactivity of traumatised nerves. Acupuncture does the same but cts in a different way, so the acu and the ami together make a powerful nerve numbing agent. 

Stress certinly plays a part in the onset of vulvodynia, as I am sure hormones / menopause does. Mine started when I was under stress and had just entered perimenopause. I think there are often multiple factors at play and all of them need to be tackled in the fight to get rid of the pain.

Hi Suki, I am going to try really hard to beat this, and all your help has been marvellous, I printed off the very first message you put on so I can read often and try all the same things.  I have bought some coconut oil today, and will give that a go, it's solid so does it melt easily in your hand?  I will use after going to loo each time.  Also got some Dermot 500 cream to perhaps try at night.  I tried to get some oatmeal bath sachets as heard they are good too, but couldn't find any, will have to order on line.  Regarding the Nortriptyline I have been recommended, how long does it take to work, I have been told to up the dose every 2 weeks.  So I am on day 5 now, but noticed no changes.  The first night I took it it knocked me out almost, and the second, but last couple of nights I have taken ages to get to sleep.  I haven't had the dry mouth yet, or any other side effects.  I am a bit worried about taking such a high dose, is it safe?  I don't like the idea o taking anti depressants as has a bad experience few years ago trying to come off one, gave me brain zaps for 2 months.  Are these ones addictive?  Did you also use the Vagifem and YES?  Was yours continuous pain every day at its worst or just now and again?  Mine seems better in the mornings than the evenings.  It never feels normal though, but it's either a stinging pain or a drawing aching pain, or at other times it just feels uncomfortable as if you have a tampon inserted incorrectly.  I will look up acupuncturists in our area to see what is about.  Are they very expensive to use?  Don't suppose NHS will fund it.  I am also doing the pelvic floor exercises as many times a day as possible.  Thank you so much for your invaluable support, I am sure everyone appreciates it

Hi, has anyone else tried Dermol 500 at all, I read somewhere in can help with Vulvadynia but when I read the instructions, I got a bit worried as it said "Do not use DERMOL CREAM or OINTMENT as treatment for the following skin conditions.

? untreated infected skin

? rosacea (unusual reddening

of the nose and cheeks) ? acne

? skin conditions involving the mouth area

?

? skin conditions around the

anal or genital areas including genital herpes "

The above worried me as it says not round anal or genital areas, whereas I thought that was what is was for?  Do you put it all over the vulval area including anal area?  Scared to use it now

 

Hi Linda,

Mine started 6yrs ago 🙁

From what i remember i used tea tree oil in my bath and a few days later i was in worlds of pain! Sore, red, swollen. 

Went to the GP and he said just looks inflammed. When i think back i should of got him to do swabs for thrush. 

But ever since that day i had pain and discomfort.

Going to a womens health physio in March so hopefully that will help. 

Just keep going. Dont let GPs or Gynae docs just keep prescibing creams because for me everytime made it worse xx

The amitriptyline takes a while to kick in, but your body gets used to it so you need to keep upping the dose until you get to 50-75mg. The dose is much lower than was used for people with depression (they took 150-200mg a day). I don’t know what it is like to come off it. I know I was advised that once I am pain free I need to leave it for at least 3 months before I start to come off it, step by step very gradually. If you come off it too early the pain comes back. What happened with me once i had been pain free for sometime menopause really started to kick in and I got hot flushes and night sweats. One of the treatments for night sweats and helping to sleep through them at night is amitriptyline, so as I had already adapted to it my GP said to stay on the ami. It certainly had helped with the night sweats - the only reason I know I have them is because they wake up my hubby - I sleep right through them!

You cannot get acupuncture on the NHS - I paid £40 a session for mine and I needed around 10 sessions.

My pain was a continuous burning - always there but was slightly better in the morning and got worce by the evening. That is because the nerves had a chance for a little rest and night, then all the moving about you do in the daytime aggravates them. It also got much worse if I did to much or, obviously, on touching.

Hi Hay, gosh 6 years is a long time, I see you have started amitriptyline recently, let me know how you progress with it, I have just started Nortriptyline which is similar, on day 5 but no change yet,but think need higher dose to get any effect, seems a slow process.  Have you seen a gynaecologist yet?  I went privately and she was a lovely lady, very sympathetic and diagnosed Vulvadynia right away.  I have another appointment with her end of March.  I am feeling so low and depressed but am having counselling, with MIND, a 12,week course, you pay contributions as to what you can afford.  I initially thought mine was cystitis as similar stinging pain but unfortunately not.  I am trying the creams first as they don't seem to aggrevate me at the moment.  I am trying everything I can, including no tomatoes and potatoes, no tea or coffee, just plain tap water!!  Hope you improve soon too xx

hi Suki, thanks for info on anti depressants, I will have to up the dose gradually, I have another week on 10mg then told to up to 20mg.  It's interesting that the amitriptyline helps you sleep, I did the first 2 nights but last 2 very fitful sleep and I really want them to knock me out so I get a good nights sleep.  It might be that I have all the worries going round and round in my mind stopping me from relaxing to get to sleep.  Maybe the higher dose will be better.  Not sure why she gave me Nortriptyline instead of amitriptyline though.  That is not too bad £40 per session, not good but worth it if it helps with this awful pain.  I will investigate next week.  Did you get any stinging as well as burning?  It's strange as mine doesn't hurt when touched, I had several internal exams and none of them were painful whic really surprised me.  It feels as if the pain is mostly towards the back, sometimes the anul area stings too.  Yes it makes sense I suppose that the nerves have had all night to relax and then gradually get more aggravated as the day goes on.  Today has been a better day for me, managed to walk around town and supermarket for 2 hours, slowly, and this afternoon has been very mild discomfort, not sure if was the Dermol 500 or not, probably too soon to say.

I think that having some kind of lubricant or emollient on there - I always used natural oils - provides a protective layer and reduces aggravation from walking around. I can’t really remember the exact sensation now (and don’t want to!) but I remember saying that it was a burning / stinging feeling. Like you, mine was to the posterior of the vaginal opening and all the way back to the anus. I think that is the most common area to get it, although it can be more on one side than the other for some people. My clit wasn’t involved so I could use clitoral distraction as therapy (I read somewhere that it helped, but only while the clit is being stimulated and a little afterward. The pain soon comes back). My hubby applied that treatment for me, if you know what I mean .....

Have you tried Emuaid at all, was reading on the website and lots of women with Vulvadynia have tried it with great success?  It looks very expensive though, but do wonder if it's just advertising promotion.  It's supposed to have healing properties and 100% natural .

It is way too expensive for what is basically just animal fat. I think the healing properties come from the other ingredients it has such as silver. I bought some and the tub is tiny and it had a false bottom, so you get even less that you thought. I was very surprised to find I’d hit the bottom of the tub so quickly - the bottom inside the tub is halfway up the tub! I bought it for hemarroids but it didn’t do anything different to the much cheaper anusol. Complete con. Plus, I’m vegan now so I’d never use anything extracted from the bones of farmed emus. 

Becides, your vulva isn’t injured, it doesn’t need to be healed. It is a problem with the nerves. The nerves need to be calmed down.

Hi Linda, just wanted to mention you don't need to order oatmeal sachets on line.  Just buy some oatmeal from the supermarket and put half a cupful into an old sock or stocking and swish that about in a bathtub of water.  Also, a cup of salt can help also: I've got friends who swear by it, although mine was not helped by anything but a change in diet.  

Minamii

Havw you gone to a women's health physio yet ? They are the mainline of treatment for this. Your pelvic floor can be overtight and compressing the nerves. This causes itch sting burn ache and all the vulvodynia symptoms!

hi Katie, no not tried a physio yet, I wasn't offered that by the gynaecologist but next time I see her if no improvement at all, I will enquiry if that is an option I could try.  Is yours on NHS?  Did your GP recommend it?  How often do you go?  I am doing daily pelvic floor exercises to see if it helps too.  What did the physio do for you?  Sorry so many questions but it might be a route I could try.

Omg linda u have to go. My gyne gave me meds and told me it would go in three months. They havent a clue how toto treat this they just treat the symptoms you need to get to the cause. I rang around and found the a women's health physio that specialises in vulvodynia. Within four sessions I had improved massively. I see her once a week. She does theur physio vaginally and releases the tight muscles in my pelvic floor. The muscles were compressing the nerves and causing the itch sting burn! I had no idea. They are the mainline of treatment for vvd. I have not seen my gyne since I started physio two months ago. They address the diet and skin and everything as a whole. All of my physios patients have recovered. She said gynes don't know much about vulvar pain and just try mask the symptoms. I wanted to get to the botten. I had no Idea I was guarding down there and clenching when I had a previous infection then the infection went and I was left with infection like symptoms. But its the nerves. She will b able to tell within the first session if ur pelvic floor is tight and pressing on the nerves causing ur symptoms. Stretches wont fix it if the muscles need to be manually released. Hope this helps its the best thing I ever did. I am recovering 😊. But like suki said its slow and there are lots of ups n downs. But if I had of listened to my gynes I dunno where I would be now. Read up on pelvic pain rehab vulvodynia. You will see examples of what I mean xxx

Hi Katie, that seems really interesting, I will def think about it.  Bit confused now as not sure if to go down the acupuncture route like Suki did as that cleared hers up, or the pt route as you have.  I think my preference at the moment is acupuncture as not sure I could cope with someone stretching me in that area at the moment.  But I will have a read up on it to see what they say, are you still on amitriptyline though?  Are you self funding or on NHS for payments, I have already forked out a lot for private gynaecologist.  This is a horrid condition and I had never heard of it up until 2 months ago.  I know for a fact though that if I feel at all upset or stressed over anything, the pain def gets twice as bad, so I think it must have an element of stress involved.  I am a very stressy person too, cup half empty and all that.  Today has been a good day, hardly any pain, not sure if it's the Dermol 500 but hopeful it is helping to a degree. xxx

Acupuncture didnt work for me as I had a physical cause and wasnt aware of it. But try that all first I tried all of it and didnt work so physio was my last resort and is the mainline of treatment for vulvodynia. So try that all first and see how u get on. I funded it myself ye.

Like Katie says, what will work best for you will depend on the cause. Mine was caused by my nerves being traumatised by repaeated thrush infection and the home treatment I tried in despiration. I didn’t have tight muscles in my pelvic region. I still did my own pelvic exercises though. 

Katie, so I went to Physical therapy twice so far, 

The last time I went ... she massaged this on spot that was hurting & like a sharp pain, after the session I was in pain for the rest of the day? 

Is it supposed to be uncomfortable & when will I find relief by?

Hi Nisha, I was in physical therapy for this and my PT called this manual release, it did hurt and will continue to hurt each time you do it, however, the pain should be a little bit better each time. Every now and then I would have really bad days where it was worse, but the less tense the muscles get, the better it will be. I have had 2 out of 3 sessions of the vaginal laser therapy (this one is Mona Lisa but there are other brands of it) and I used steroid injections into the affected area which hurt but did wonders for me. The first doctor I had didn't know how to fix it but gave me Noretrypteline and told me to go up 10mg every week until I found relief. I found that 4 pills (40mg) was the magic number for me. It made me a little more groggy than normal for the first few days but no other side effects.

Hiya Linda,

Sorry to hear your feeling low. Its is horrible and i feel your pain, i sometimes get extremely low days. Always feel i waiting for a flare up if i have a good day! 

I have a womens health physio appt in March, i cant wait! 

Im only on 10mg at the moment, i need to definately go up to at least 20mg. First few days i felt drunk taking them! 

For me loose clothing and no knickers if possible helps, also putting nothing on that area. I wash with water only and dont let any shower gel, shampoo etc run down me. 

Hope you get some releif soon. X

Hi hay, yes I am just so down with this, every day I wonder if it's going to be a good or a bad day, feel so weepy all the time, it just takes over your whole life, I spend all day trying to do things to help, either yoga, meditation, washing with water to cool, putting on lube, drinking lots water, never ending.  I bet you can't wait fir the appointment in March, is that on the NHS?  I started on 20mg Nortriptyline tonight, it hasnt affected me much so far.  When I first took the 10mg I felt drunk too.  I try and wear skirts or leggings now, no tight jeans.  I have tried going without knickers in the day but because I use Vagifem at night and Yes in the mornings, there is too much leakage.  But I use no soap, gel, etc, just plain water.  Hope you are bearing up.  Sometimes I feel I will beat it, other times I feel it's hopeless.😥

Hi Linda and Hay, it may be worth you keeping a log of what you eat and do in a day to see if there is any pattern to when you have a bad day - try to identify what is triggering it. I think I have said before that you really need to get up to 50-75 mg amitriptyline for it to really help. I had said effects whenever I went up by 10mg (feeling drunk, hard to concentrate, dry mouth and severe rash). The way I managed to get up to 50mg a day was by going up by 5mg every 2 weeks. I had to cut the 10mg tablets in half.

Hi Suki, I started on 20mg last night, no side effects so far, not like when I first took the 10mg.  How much are you on now, I think you said you were still taking it?  Do you have any side effects now if still on it?  I am feeling near to tears all the time now, any little thing sets me off, so unlike me.  Just hope it's not the tablets doing it.  Will do 20 for 12 days then  up to 30mg.  Seeing acupuncturist next Friday for a free 15 minute chat with view to booking first appointment.  Thank you for all your kind help, it's invaluable to us all 

I have been on 50mg for over 4 years now. I am fine. So side effects. No long term issues. I feel normal. Still sleep well, even through menopausal night sweats and tinnitus.

That sounds great.  I think one side effect I am getting is slight constipation but got some syrup from chemist, a very mild laxative as one the GP gave me was too strong.  Also she said to eat plenty of greens, drink lots of water, also she said tinned pears and peaches are good as they have pectin in which helps with constipation but only in natural juice, not syrup.  I also have prunes every day for breakfast.  It's almost as if my body is craving for natural foods now, no rubbish.  I did sleep really well last night with 20mg dose.

Good to hear you slept well. Sleep is part of the cure - our bodies heal themselves when we sleep, plus if we get good sleep we feel more able to cope with what life throws at us. When I first got vulvodynia I was in a terrible state because I couldn’t sleep. I was depressed and exhausted. Getting decent sleep made me feel more able to cope. You have reminded me - I did get terrible constipation each time I upped the amitriptyline. So bad I got piles. So then I had a painful vulva and a painful bumhole! In fact, at one point the piles were so painful they outdid the Vulvodynia! I joked that I had found a way to reduce the vulva pain by having an even more painful anus! My GP recommended movicol which I took after upping the ami dose. I didn’t need to use movicol forever because I found that my body would adjust and the side effects would die down. I think I might still be a little on the constipated side but I’m fine as long as I drink plenty.

Well that's one way of combatting Vulvadynia- find another illness to out do it!  That made me laugh 🤗   I took the syrup this afternoon, it certainly worked fast, only just made it up the stairs!!  Will take less tomorrow.  I have had a good day today, managed to shop in the morning and took a gentle 30 minute walk this afternoon, with no pain at all.  Little discomfort this evening, but bearable.  I think the yoga and pelvic floor exercise may be helping.  If all the days were like today, I could cope.

Hi Linda, 

I feel your pain, i have good days and bad days. Your right it takes over.

Not sure about yourself or anyone else, but yesterday i had pain on my vulva on the left side then by the evening it had gone from my vulva to the inside. Its so stressful because your always waiting for pain even on good days. 

Yes the physio is on the NHS referred by my GP.

I found these online which i may purchase for some relief on bad days. 

https://www.stressnomore.co.uk/vagikool-feminine-cold-pack-12098.html?gclid=EAIaIQobChMIrs-r166r2QIVbrvtCh0AlwnsEAQYASABEgKWnvD_BwE[/b]