How I cured my vulvodynia
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I see so many posts on here about constant or provoked vulva pain that I thought it might be useful if I explained vulvodynia and how I cured mine. Vulvodynia literally means vulvar pain and is a condition of the nerves in that area. The nerves have become hyperactive and hypersensitive due to trauma which can be chemical or physical in source or due to infection. I think mine was due to persistent thrush infection and the many remedies I tried to cure it, including home remedies such as bathing in a bath with some cider vinegar in - that made my soreness much worse (chemical trauma). Vulvodynia can cause itching, sore or burning sensation and this can be continuous or provoked (only happens when the area is touched). The nerves are so hypersensitive they register touch as pain and the usual way to diagnose it is to touch around the vulvar area with a cotton bud and where the touch registers as pain then that is the affected area. It can involve the whole of the vulvar area or can be in a horseshoe shape toward the posterior (which may also involve the perineum) or the anterior or can be offset to one side. The pain is a form of chronic neuropathic pain because it stems from nerve damage as opposed to nociceptive pain which is caused by tissue damage. Neuropathic pain can be very hard to get rid of. It took me 1.5 years of determination and the occasional disappointing set back to cure my vulvodynia. Probably more like 2 years to get back to normal.
Ok, ready for a long story about how I cured my vulvodynia:-
First I saw a gynaecologist. He took a biopsy of the painful area and confirmed no diseases or cancer. He put me on amitriptyline and steroid cream. These slowly worked for a while and made me comfortable enough to have a long overdue smear test. I had the smear test and the pain came back full force - back to square 1. By that time I had used the steroid cream for as long as is recommended and had stopped it (long term use not recommended). However, desperate to get rid of the pain I tired it again, but this time the cream stung me and made the pain worse. The gynaecologist gave me lynocaine cream to numb the area, but that stung me and made me worse. Nothing was working and in the end the gynae said that he could not cure me he could just help me managed the pain. Well, I wasn't going to put up with that for the rest of my life. So I did some investigating to find someone else who could help me and found a dermatologist consultant in Oxford who specialised in vulva pain. I also found some medication on the internet, made in Italy which is a gel is specifically for treating vulvodynia. It calms down the overactive and hypersensitive nerves. Saginil gel - you can order it direct from the suppliers, epitech, on their website. You can do this because it is not classed as a medicine because it is made of natural plant-based ingredients. It is expensive, as is the post from Italy, but I am so pleased I bought it because it was the only thing my skin could tolerate there and it did make a difference - it reduced the pain so that it was bearable and I could function better with daily life.
i saw the dermatologist and she told me all the things that she had found worked to get rid of the pain, but nerve pain is difficult to get rid of so she suggested I try them all and stick at it. i was surprised because, appears from upping the amitriptyline dose to 50-70mg a day (I was on 20), the rest of the things were what you would class alternative, or natural, cures. They were: western acupuncture, physiotherapy, chiropraction and manual desensitisation. Now, different things work for different people because there are different causes for the vulvodynia: infection, physical or chemical trauma, hormones, trapped nerve in back. I knew mine was caused by repeated and persistent thrush and the various treatments I tried to get rid of it (including cider vinegar - ouch! No!). So I didn't see a chiropractor because is didn't thing it stemmed from a pelvic nerve problem, however, from what you describe, yours might. I did do yoga exercises that free trapped pelvic nerves. I bought a book on pelvic floor exercises and did those, rather than see a physio. I did the manual desensitisation - this is where you stroke yourself very lightly in the painful area, using non-irritating lubricant (I used oil based lube by yes, or coconut oil), just once the first day. Then each day you gradually build up the strokes in number and pressure. The idea is that you are retraining the nerves to register touch as touch and not pain. So, massage yourself there just enough so as not to cause lasting pain afterwards. I built it up until I could do 100 strokes of fairly good pressure, then I moved into inserting a finger, then two, then the tip of my husband's penis and then gradually out him in a little further each time, until I could get most of him in, then starting moving with him in, again gradually building it up each time. I also found a GP that also ran a Western acupuncture clinic. Western means that they leave the meddles in and pass electricity through them. That was what really worked for me - each time I went I just got better and better. Apparently the amitriptyline and the acupuncture work well together to dampen down those hyperactive and oversensitive nerves. I upped the amitriptyline to 50mg as day, very gradually by 5mg every 1 or 2 weeks because it caused side effects so my body needed to adapt to each increase.
Finally, there are the changes to how you live. No tight clothes, no sex (until you are ready), no exercise (I gradually built that up too but walking just a short distance and gradually increasing it - never do an amount that cause she lasting pain). Go knicker free if you can - I work mainly from home so was able to go around with no knickers on and baggy jogging bottoms or a skirt. Sitting also caused problems (I work at a computer) so I got a ring shoved cushion form woman to use after they have given birth and sat in that so that there was no pressure at all on the sensitive area (dame for driving the car). Coconut oil was soothing (raw, cold pressed, organic coconut oil) so I applied that externally and internally with a clean finger after every time I went to the loo (I carried a little pot in my hand bag so I could apply it while out and about with an organic, pesticide and bleach free cotton pad). No scented products on that area, in fact I didn't wash there at all, I used coconut oil to clean the area and when showered I used organic, nasty chemical free and scent free body wash and shampoo and conditioner (because stuff runs down). I also washed my clothes in scent free, kind-to-skin laundry detergent and conditioner. Toilet paper has bleach in it, so I got some tissues that were bleach free and used those to wipe after doing a wee.
The key is to be persistent, try everything, gradually build things up, stick with what works, be determined, don't give in. The consultant dermatologist was very impressed with me because I was so determined and didn't give into urges. She said she had many women who just got fed up with how long it was taking and just went for a long walk / bike ride / horse ride or had sex and put themselves back at square one again. It does take a long time - it took me 1.5 years of all that stuff in my message above to get to being pain free. Even now, 5 years later, I still apply coconut oil after every time I go to the toilet, use tonnes of oil based lube during intercourse, go around the house wear no knickers. I don't want it to come back. I am also still on 50mg amitriptyline a day. At first I was afraid to come off it because the consultant dermatologist told me, you may be pain free, but if you come off it too soon, the pain can come back. So it is best to wait a few months after being pain free. Then menopause set in and I got hot flushes and my GP told me to stay on the amitriptyline because it helps with hot flushes. My body has adapted to it now. I hope to reduce the dose sometime (gradually, by 5mg very 2 weeks, just like I built it up). I still do pelvic floor exercises - the book I got was called 7 steps to pain-free sex by Claudia Amherd. It is mainly about vaginismus, but the exercises apply to vulvodynia too - just don't do them sitting on a juggling ball (ouch) do them standing up first, then lying down, as it advises in the book. Gradually build up the exercises, doing more and more each time. Again, don't do so much that it causes an increase in pain or lasting pain - cut back if that happens.
Also, you need to get some organic, chemical free sanitary towels for when you have your period (no tampons).
13 likes, 1041 replies
eva43256 Suki_girl
Posted
Good for you for pursuing a cure. Luckily I don't have pain. I think your post may help those who do.
Minamii Suki_girl
Posted
Hi Suki girl. Very interesting to see how you cured your vulvadynia, and sorry to hear you had such a difficult time. I suffered from the constant itch and pain for about seven years, with it getting gradually worse and the doctors treating me for many different things and no relief.
My breakthrough came about when I had a bout of gastroenteritis and couldn't eat for about four days. During that time my vulvadynia eased, until by the third day the symptoms had entirely disappeared. That gave me the hint that my problem might be diet-based.
I gradually reintroduced foods over the next week, and found that the symptoms slammed back about one hour after I ate some potato. I cut out potato and the symptoms again eased, coming back whenever I ate potatos relatives, the other Solanacea plants of tomato, chilli, bell peppers or capsicum, and eggplants. Tobacco is also one of this group, and although I don't smoke, I get return of the itch if I spend time in a place, such as a club, where tobacco is smoked.
All of these plants are closely related to the Deadly Nightshade, or Belladonna plant. It seems that as I grew older I could no longer de-toxify any of this family of foods, and by the time I reached menopause the problem had grown chronic.
Now i avoid all of these foods and I am absolutely symptom-free. I think of all the various things that doctors mis-diagnosed me with over the years and am so glad to finally have found out for myself what the problem was, and happily it is one that is easily fixed. I do occassionally give in an have some hot chips (I'm only human!) but for that I can take some of the edge off the pain by taking a strong antihistamine.
Again, so glad you've found a solution to your problem.
Minamii
Suki_girl Minamii
Posted
That is very interesting. It also reminds me that I had read that vulvodynia can be caused by a reaction to oxalates in food. There is a whole thing about some scientists in a clinic recommending going on a low oxalate diet to cure vulvodynia. I forgot to write about that - that in the interests of going all out and doing everything I could to cure myself I also went on a low oxalate diet for a couple of years. Once the pain had gone I gradually reintroduced high oxalate foods and I was still ok, so perhaps it was unrelated to diet for me. I wonder if those foods that caused you problems are high in oxalates?
Suki_girl Minamii
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Suki_girl Minamii
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pauline25402 Suki_girl
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Suki_girl pauline25402
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Minamii Suki_girl
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Basically, the family of plants that make up the Solanaceae have four main alkaloids that are all toxic to a various extent. Solanine is the one I'm sensitive to, but they are all to some extent toxic. Just as I aged, my liver became less efficient at eliminating the toxin from the nutrient content, and the solanine built up in my system. I've also known of one child who used to get horrible eczema. It was eventually traced (thanks to my telling his mother my suspicions) to a solanine sensitivity to tomatoes. He had tomato sauce in nearly every meal and his eczema has since cleared completely when he eliminated tomatoes from his diet.
Minamii
Suki_girl Minamii
Posted
Wow. That's interesting. Why did it cause vulvar pain? Did the toxins come out in your urine and irritate you?
Minamii Suki_girl
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You have to remember that I'm no doctor, so I can only give my best guess on this. But it seems to me that the toxins were deposited in the mucous membranes of my skin, causing the nerves to react. I also developed bleeding gums and diffuse itch in the mouth whenever I eat too much of the Solanacea family. But of course the vagina and vulvar have the most mucous membranes and I got the most pain there. Urinating didn't bother me, so I don't think Solanine gets excreted in the urine. It seems my liver does get around to de-toxifying over the course of several days but it deposits into the mucous membranes until the liver can manage it, rather than de-toxifying immediately as when I was younger. I used to be unable to sleep due to the pain, and forget having sex. Happily, cutting out potatoes and tomatoes is a small price to pay for being able to to all that again.
Minamii
Suki_girl Minamii
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Continuous unrelenting pain is horrible. I recently had a shoulder operation and straight afterward I was in the most excrutiating pain, but I knew it would pass and I felt appreciable better by the next day. But that vulva pain just carries on, day in day out, always there clawing at you. So glad to be rid of it.
I have never heard of the problem you had with solanine. I feel that someone should gather together everyone's successful vulvodynia stories on a website so that others can read our stories and discover what the cause is for them and find a cure. My gp knew someone who had had it for 20 years!
medicalname Suki_girl
Edited
Thank you both for sharing your stories in detail! I'm battling vulvodynia as well, for many years. I am currently very confused to try which approach. I wanted to try the low oxalate diet, just found out about it while googling, but my gp dismissed it, and any other holistic approach really. She prescribed amitriptylines and told me to try them for 4 weeks. It's so upsetting how long it takes to try things, with no definite cure on the horizon. I've been trying different things for years and even one more day is too much at this point. But, I am desperate, and will give it a go... Not sure if it's a good idea to try two very different things at the same time, if it works, I won't know which one worked, and the pills take a long time to get used to / slowly stop..
I have two recommendations (that I haven't seen in a lot of places) for anyone else who is suffering.
Using a layer of gauze swab and a piece of cotton instead of pads feels a ton better than any other commercial pad or liner I have used, no matter how cotton they market it to be. You can place a pad or panty liner underneath it if you have heavy flow.
I have just started using Dermol 500 lotion. It feels a million times better than last week. It's too soon to say if it will cure it but I am hopeful. Look for a similar lotion / creams. They are called emulsifying ointments.
Like Minamii I too feel like there is something wrong internally with me, like an allergy of some sort. I have inflammation on my eyes, my scalp and face also are very sensitive. Very similar feeling of soreness and irritation to vulvodynia.
I hate to stop eating all the delicious cakes, breads, junk food and even the healthy tomatoes and stuff but I feel like a special diet can fix this. I feel like I either need to use Dermol 500 to feel okay, or find the right diet for myself. Again, shame it takes so long to find out what food you are intolerant to. GPs dismiss my diet related inquiries so it's hard to design a diet on my own. I have done a cleanse 3 months ago which didn't seem to help, and now I think it's because of the nightshades and some high oxalate greens I have been eating since then.
Suki_girl medicalname
Posted
It is a shame your GP is unwilling to consider alternative therapies. Stick with the amitriptyline, it will help with pain and sleeping. However, I believe that it was the alternative therapies (acupuncture, manual desensitisation, etc) that actually cured me. I was surprised, after my experiences with gynaecologists, that my consultant dermatologist (who specialised in vulvar pain) recommended acupuncture, manual desensitisation, physiotherapy, chiropractic and psychosexual therapy to me, but I am so pleased she did. These were the things that, over the years, she had found to be successful. However, she did also say that I needed to get up to 50-70mg amitriptyline a day. Being a dermatologist the first thing she checked was the skin on the rest of my body and my eyes to see if there could be a skin condition or allergy cause. But I had no other symptoms.
She also told me that it is worth just trying everything. Do, I tried everything she suggested and more (low oxalate diet, suppliments, saginil gel) and found myself gradually getting better so I continued with everything. It didn’t bother me that I didn’t know what was and wasn’t working, all that mattered was that I was getting better. In the end it doesn’t matter exactly what cures us, just that we are cured.
It seems to me that, because you have other skin issues, you need to see a dermatologist.
Suki_girl medicalname
Posted
She also told me that it is worth just trying everything. Do, I tried everything she suggested and more (low oxalate food, suppliments, saginil gel) and found myself gradually getting better so I continued with everything. It didn’t bother me that I didn’t know what was and wasn’t working, all that mattered was that I was getting better. In the end it doesn’t matter exactly what cures us, just that we are cured.
It seems to me that, because you have other skin issues, you need to see a dermatologist.
medicalname Suki_girl
Posted
Thanks for your reply suki.
Glad you found solutions for yourself. I am going to try therapy for the first time in my life this week. Quite excited (probably too hopeful). I will ask them about psychosexual therapy as well. I'm sure it's connected somewhat, I come from a conservative family and I still find sexuality quite embarrassing. I probably have subconscious thoughts like virginity is the nice honourable thing for a woman and premarital sex is bad. I'm sure I'm effected by not just my family but the whole culture and media everywhere suggesting these things. High five for a guy for having sex and a 'slut' stamp for the girl right?
I've been to a dermatologist about this for the first time a few months ago, and I'm sure there are good doctors out there but this woman was terrible. She examined me and said my skin looks just fine, when I mentioned if my stress could be a factor she started brushing it all off to that, and acted like I was exaggerating. But the douchiest moment was when she said 'won't your boyfriend get tired with you?' when I was saying it hurts so I can't have sex with him a lot. Way to make me worse than I already do, doc! I really ran out of my respect for doctors and the whole medical industry because of this type of behaviour. Worst, I lost my trust. I can't rely on a doctor anymore to 'fix' me, I have to research and come up with suggestions, spend ages looking for information online. Makes me extra stressed on top of everything.
I should try to find a different dermatologist but I am so fed up (also broke at this point). Anyway sorry for the long post and the ranting, I have some good news / suggestions.
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I want to say that since I posted 3 days ago I am feeling ABSOLUTELY PERFECT! It's too soon to say I know, I always had on and off days in the last 8-10 years of this illness. Here's the 3 things I've been doing if it helps anyone: Emulsifying ointment (dermol 500), water consumption, and diet (avoiding nightshades). PS: I haven't taken antidepressants because I am afraid I might get well because of the ointment, then think the pills helped. And then take pills for the rest of my life.
- Emulsifying Ointment: This immediately made me feel better so might be the most important thing compared to the other points which are more indirect. I found out about these ointments from an NHS booklet online, from 4 years ago! I started using Dermol 500 (there are other brands you can try, I hope I don't sound like I'm marketing a product) 6 days ago, I was putting it on almost every time I went to the toilet, and especially before going to bed. It immediately soothed my skin, and now on 6th day I haven't felt the need to put any on yet! (I used to use flora balancing bv gels almost constantly, acti gel, flora plus and boots brand stuff etc, they used to burn when I'd first put it on, and had other problems with them, but it was okay and that's why I lived with this curse for years, because it was 'okay'. And recently bv gels just stopped working.)
I freaking hate walking around in 'wet' underwear, but better than that awful burning and irritated feeling. Best way to describe is I feel like I am wearing an underwear made out of wool, so it scratches my skin, makes it burn, etc.
- Water: 3 days ago when I spoke with my GP she told me low oxalate diet is unrelated and even if I had high ox I should just drink lots of water. This made me furious, the fact that doctors don't do any tests on me, that she is offering such a nothing-y thing, and that they just make these assumptions and just dismiss any holistic treatments.
But I did. I started forcing myself to drink 5-6 big glasses of water a day. (Filtered tap water and a small bit of evian. I am not made out of money! :p) This might not mean anything to everybody else but I used to drink maybe 1 cup of water a day. All my life. Not much of a water drinker. I am on pills for life, for a different illness, and at check ups doctors always told me I need to drink more water after seeing my unclear urine samples. And I never took it seriously. (bangs head on the wall)
I feel like my vulvadynia is an inflammation, dermatological/internal, like someone else said as if the toxins coming out of my pores burn my skin and cause all this irritation. Or my skin / body was just dying with thirstiness.. I feel super ignorant.
Diet: I stopped eating tomatoes and all the other nightshades. My mother has an allergy to tomatoes so maybe this is a big thing. When I had a horrendous flare up last week I had been eating loads of tomatoes and peppers. I am also doing a candida diet, but not super strictly. I avoid sugary things as much as possible, as well as packaged stuff with preservatives etc. Try to eat lots of veg, eggs, organic yogurt, etc. Yesterday we had burgers (first time in months for me) for lunch and sourdough pizza (I didn't put any tomato sauce on mine) and I still feel fine vulvadynia-wise. Saying that my face feels very irritated as I am typing this, but moisturiser helps with that.
Perhaps a combination of this 3 will help with all my other skin problems, over time.
Suki_girl medicalname
Edited
By the way, my GP said “your husband must be very patient” - as if men have sexual desires and needs that have to be met! If anything, my sexual desires are stronger than my hubby’s and he doesn’t give me enough!!! When he had pneumonia and had no strength for sex for a long time his GP didn’t say “your wife must be very patient”!!
I am sure that stress is a contributory factor - I was very stressed when I got the persistent and recurring thrush which turned into vulvodynia.
medicalname Suki_girl
Posted
You are so right. If this was a male illness you bet it would have been cured ages ago. Infuriating.
Stress is so hard to pinpoint to connect with illnesses as it's not like a physical thing you can rub on your arm and see a visible reaction. But I am sure it is connected to most diseases. It does have a biological effect of course on our adrenal glands, immune system and everything but I will probably never find out what shape I really am in with my GP being so unhelpful, I have to literally beg to give samples for them to do tests.
I think stress is the hardest to 'fix' of all. Deep breaths have been the best for me but they are so momentary.
I watched a really helpful video yesterday: (How to use an elimination diet in vd management) that shows how to do find what food might be causing allergic reactions in our bodies. It also shows we can reintroduce some foods back into our diet after giving our immune system a break. I feel depressed I can't enjoy tasty junk food ever again and I want to hope I can once my body recovers from whatever the hell is happening to it....
Another informative video about yeast infections and vd:I love his holistic, anti drugs approach. I've used many things and they usually just cover up symptoms and not fix the underlying problem so it just happens over and over again. I had tons of yi in the past years, I can't remember which started first, and I hope if I can find the right diet I might get rid of both.!
I don't know if my problem can't be called vd if it is related to dermatology rather than nerve system. They are indeed very different and probably needs to be separated but so far just finding out the name vulvadynia has helped me find SO much information.
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Suki_girl medicalname
Posted
Minamii medicalname
Posted
I'm so pleased that you have found relief! And good on you for trying everything and finding three that worked for you. Also, I know what you mean about a horrid flare up. I was at a friend's party last week and we were all outside around the barbecue (this is Australia, it's hot as hell for Christmas here!) Anyway, my friend knows about my allergy to nightshades, but she served some sauce on the snags (sausages) that she said didn't contain tomato. So I slathered it on and it was delicious, enough for me to have seconds. That night, all the old symptoms were back so badly that I couldn't sleep. I took some antihistamines, but it only took the edge off it, it was still horrible. Anyway, I went to see my friend the next day and asked her if I could see the label of the sauce. She got it for me and I took a look. No tomatoes, as promised. BUT... it had chilli, paprika, potato thickener, and red and green capsicum! Aargh! No wonder I was in utter agony! To my friends credit, she didn't realize, she just assumed that tomato was the only one I had a problem with.
Minamii
Suzanne_L Suki_girl
Posted
I’m so happy to have found all you girl’s, I’ve been suffering of vulva pain itching and burning in the last 6 months, feeling very said and depress.
Reading all your info and crying at the same time. It will be along journey I see. Seeing a new doctor tomorrow will have a lot of questions.
With all your info I will be making a plan and trying to be positive.
i will be starting the diet today for sure, talking about medication with the doctor also.
Thankyou all 😍
Suki_girl Suzanne_L
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medicalname Suzanne_L
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Hi everyone. I just wanted to share an update on my experiments.
I am not 'cured' but I have been a ton better recently than I have been in the past decade.
Here are some things I'd like to share in case it helps anyone else out there:
I kept saying 'my' vulvodynia because everyone seems to have different issues, I believe mine is a dermatological issue since the creams help so much but these might not help everyone else. I still haven't tried amitriptyline mainly because my vulvodynia has become so very mild lately already so I didn't think it's necessary.
Hope these help someone. And thanks so much for sharing your experiences.
susan05495 medicalname
Posted
Totally agree emulsifing ointment helps me and never use soap products . I also only shower and never bath . i apply vaseline if i swim .
i agree most definitley that my hormones are a big factor . Also agree about excercise i walk a minimum of an hour a day . im currentky only having mild symptoms at certain times in my cycle and lidocaine works well for me . i also have over the years had attacks in times of extreme stress . Most recently because my mum died . i had 2 months of pain but pretty much under control at present
Suki_girl medicalname
Posted
I used diprobase cream. Like you say, there are a lot of such emolients and it is worth experimenting to find put what works for you. Mine personal favourite was coconut oil - I found that soothing but the oily stain can show through clothes, so panti pads are advised when out and about.
Sitting definitely aggravates. However, for me exercise aggravated too. I had to give up all exercise and walked only when absolutely necessary. As I was recovering I walked longer and longer distances.
Columbia medicalname
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where do you find dermol 500? is it a body lotion or a balm thanks
shruti45532 Columbia
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its an emollient (kind of lotion). google search and it will show pharmacies selling it
susy72358 medicalname
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I had to comment on you mentioning the inflammation in your eyes, scalp and face. I had that too. Mine was food related. I have to stay away from night shade vegetables, dairy, gluten, eggs and beans. I take probiotics and aloe juice. This helped tremendously and resolved my issues completely.