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
sarah16651 Suki_girl
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Suki_girl sarah16651
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Minamii sarah16651
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For me, I found that I was super sensitive to any foods from the Nightshade family. They are:
Potato; tomato; capsicum or bell pepper; eggplant; chilli (love it, but YIKES, the itch and pain); tobacco. These plants make a natural insecticide and I used to be able to tolerate them when I was younger, but once I hit menopause, my liver got less effective at de-toxifying them and I found that my vulval itch and excema got better when I didn't eat them. Took me seven years to clue in to what was doing it, though! Now I don't eat them at all, and if I accidentally ingest any (food that's been prepared and you just heat is RIFE with tomato sauces, for instance, I need to check the labels of anything I buy) then I take a strong 24 hour antihistamine. It doesn't cure the pain, but it lessens it until my body can deal with the toxins.
Hope this helps!
Minamii
Minamii sarah16651
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Oh, and since we are discussing the Nightshade or Solinacea family of plants, the toxin they make is known as Solanine. It is a powerful insecticide. If you happen to be growing your own potatoes, and they produce a tomato-like fruit, DO NOT EAT THEM. They are deadly poisonous. In the wild, the plants spread their seed via birds. Birds can eat the fruit, but since they have no teeth to break down the seeds where the toxin is mostly stored, and since they have a quick metabolic rate, they are able to tolerate the high amount of toxins present and spread the seed far and wide when they defecate. All the same, every autumn I have found dead birds who over-indulged on the berries of the weed Belladonna. So it is a risky business even for birds to eat these things. It took many generations of selective breeding by farmers in South America to make even a few parts of some of the plants edible. Below is a news article with more information:
Tomato-like Fruit on Potato PlantsNews Article
by Richard Jauron, Department of Horticulture
Occasionally gardeners are surprised to find small, round, green, tomato-like fruit on their potato plants. These fruit are not the result of cross-pollination with tomatoes. They are the true fruit of the potato plant. The edible tubers are actually enlarged, underground stems. Normally, most potato flowers dry up and fall off the plants without setting fruit. A few flowers do produce fruit. The variety 'Yukon Gold' produces fruit more heavily than most varieties.
The potato fruit are of no value to the gardener. Potato fruit, as well as the plant itself, contain relatively large amounts of solanine. Solanine is a poisonous alkaloid. The small fruit should not be eaten - it is extremely toxic. Since potatoes don't come true from seed, no effort should be made to save the seed.
bearbear4 Suki_girl
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nitajayasaputra Suki_girl
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Hi Suki girl, your sharing about Vulvodynia experience really bless me and give me some alternative possible solution to my issue.
I’ve suffer from a possible vulvodynia for the past 2 months, where dermatologists and gynecologists have no clear diagnosis because my vulva looks normal, no UTI, yeast & bacteria under control from swab test, USG normal, and no biopsy needed.
So my gynea advice me to try ignoring the pain, live normally, exercise, and have a healthy diet by decreasing refined carbs, increae root veggies and cut down diary.
However, I’m struggling with managing the pain and it somehow freaks me out and affect my daily productivity. I’m not on any painkiller at the moment.
After reading your post, I’m encouraged to try saginil gel, and research for acupuncture. I will also try to seek nutritionist for diet modification and do some pelvic exercise from the book that you refer.
Still searching for the acupuncture at the moment. Btw just wondering where the needle is put for Vulvodynia case, I suppose it’s not in the vulva area? How often and how long did u have the sessions until u feel normal again?
I’m approaching a holistic health acupuncturist who is skillful in Japanese acupuncture. Hope it will help to ease the pain like your experience.
Thanks for your sharing.
Suki_girl nitajayasaputra
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nitajayasaputra Suki_girl
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Exploring the holistic approach through Japanese acupuncture at the moment. Also I’m ordering Saginil gel that you recommend.
Thanks Sukigirl, I’ll sure msg you again for further advice and questions.
Suki_girl nitajayasaputra
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sarah16651 Suki_girl
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Suki_girl sarah16651
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Minamii sarah16651
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Minamii
sarah16651 Suki_girl
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andrea13745 sarah16651
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Suki_girl sarah16651
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Suki_girl sarah16651
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Minamii Suki_girl
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That's why this site is so helpful, because we can get so many ladies who give their advice as to what helped them. Try everything and you're almost bound to find out what works for you.This is a great resource, you don't get such a think-tank from asking one single general practitioner, who may or may not have the answer.
Minamii
Suki_girl Minamii
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We have said before that if men had such a problem a cure would have been found by now. They can get something similar on the end of their penis called balanitis - my husband had it in fact but for him it was more of an irritation and an unbearable burning. He was still able to function on a daily basis ... something I struggled with. And he was cured within a few weeks with some cream.
I suppose one message to women would be prevention - don’t let an infection go untreated, don’t use home remedies that may make things worse, don’t use any topical products that sting or apmake you sore and treat that area gently. I responded to a post the other day from a young lady who was experiencing some problem in the vulva area following rough sex and masturbating when dry. I don’t want to sound like some kill joy or frigid old lady but is a bit of rough sex really worth years of burning vulva pain? I think the vulva can stand just so much trauma then it shows you it has had enough. My western acupuncturist who also happened to be a GP told me that the vulva skin is fragile and delicate yet has to suffer so much trauma from sitting, sexual intercourse, childbirth, etc.
Suki_girl
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Have you heard of Deborah Boyle, a gynaecologist who has expertise in treating vulval pain? Part of Ms Boyle's work involves educating other doctors about vulval pain and she says that many of them are "not absolutely sure what goes where" when she asks them to do an anatomical sketch of the vulva, making understanding the condition even more difficult.
There was a piece on BBC radio 1 news back in 2015 about vulvodynia to try to increase awareness of the condition. They had some women speaking about their experiences. Ms Boyle also spoke on that programme and she said that there was no magic cream that you could put on there that would make the pain go away. I found out her email address and emailed her to tell her about saginil gel which for some women is soothing, for some it does nothing but for others it is a miracle cure - so surely worth a try. I asked why it wasn’t available in the U.K. and the only way to get it was to have it posted as great expense from Italy. I never got a reply from her.
Minamii Suki_girl
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Before I found out that my problem was diet-related, I found some relief from applying cold-pressed olive oil. Only needed a tiny amount and I used to carry some around in a little make-up bottle and apply as needed. However, it's not a cure.
Minamii
Suki_girl Minamii
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nitajayasaputra Minamii
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Hi all,
Have you heard about biomedical therapy or biomedicine for vulvodynia? Biomedicine is Nutritional & Environmental medicine that focuses on optimising cell health in order to support the body’s numerous and interconnected systems (metabolic, immunogical, neurological, digestive, endocrine).
Has anybody try and feel better with it?
The solution is focus on diet and nutrition based on individual blood and other lab checks.
I’m about to try it soon.
tatiane55054 nitajayasaputra
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Did you try biomedical therapy or biomedicine for vulvodynia?
Could you to explain more about the results, please?