How I cured my vulvodynia
Posted , 116 users are following.
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
hilde33174 Suki_girl
Posted
I did get botox and it made it kind of worse. Well I got the shooting pain back but it changed I can touch my vagina with less pain. Its just it changed so now the pain area is in my vagina.. the shootings is there too and I tried acupuncture and it did not work.. I dont understand why because I read on the internet that acupuncture does not interfere with the botox as long as I dont get it in the places they injected the botox. Where do the acupuncturist set the neddles?
Have anyone had the same experience? Its hard because I have both vaginismus and vulvodynia.. so if I get one thing well then the other goes bad.
Suki_girl hilde33174
Posted
I never experienced this shooting pain in the vagina that you and others speak about. Vulvodynia, as the name suggests, affects the vulva, which is the external parts. I have recently discovered, however, that endometriosis causes such a vaginal shooting pain and can cause itching and burning feeling in the vagina and vulva (because my daughter had recently been diagnosed with endometriosis and these are the kinds of pains she experiences). Do you have heavy periods? Is your pain worse during your period (which is often the case with endo, but not always)?
hilde33174 Suki_girl
Posted
That is interesting. It gets worse when Im on my period however I know its because of the blood that makes it my nerves go crazy. When I was a little better I did not feel that shooting when I was on my period. I do think its vulvodynia because I was a lot better after acupuncture and ami helped so I know its my nerves. However it changed and now acupuncture does not work on me anymore.. Where did they set the needles on you? I do think that I did get better with the botox but when he injected the on on the right side he caused some damage. Its only on that side and I dont understand.. Acupuncture on the right foot made it worse as well.. i dont know what to do and why and none answer me
Suki_girl hilde33174
Posted
I had western/medical acupuncture and they put the needles at the bottom of my spine ans sacrum. They may put them somewhere else with traditional/chinese acu.
hilde33174 Suki_girl
Posted
Okay thank you for the answer
Nae8723 Suki_girl
Posted
i was diagnosied with vulvodynia about 3 months ago. my pain is always worse around my period.Had anyone noticed that their period blood causes more pain. I am able to use tampons. But i notice when i ise pads my vaginal opening and vulva burn more from the blood.
Suki_girl Nae8723
Posted
I personally didn't find that the blood made me burn more, but I know others that did. I certainly could never insert a tampon.
hilde33174 Nae8723
Posted
I feel the same. The blood makes it worse. I think its because our nerves are so sensitive that every little touch makes them fire at least thats my case.
Nae8723 hilde33174
Posted
yes ive noticed before and during my period i am the most uncomfortable. Compared to sone other ladys my pain is t too bad but the burning is anoyying. Even though a tampon is uncomfortable to put in sometimes i prefer it cause the burning from the blood touching my vulva hurts more.
hilde33174 Nae8723
Posted
I understand. I would try to do something now. You might be on an early state. Better to try now than be sorry later.
Nae8723 hilde33174
Posted
unfortunately its been going on for years. ive been put in gabapentin and started pelvic floor therapy. ive been at it about 3 months. Hoping things will get better
hilde33174 Nae8723
Posted
I think it will since you started really early. Just keep doing that if you feel it helps a little bit.
missy97385 Nae8723
Posted
I have the same experience. Also when I have discharge during my hormonal cycle.
missy97385 Suki_girl
Edited
Hi everyone,
Who would have thought two and a half years ago that at I would be diagnosed with generalized unprovoked vulvodynia at the age of 39 while mother of a 10 months old babygirl and a another childwish, but no sex for more than a year..
Well, certainly not me, thats for sure. Back then I was running 15-21 KM each weekend for fun, and now I am crying after a 5 minute bikeride.
I am suffering from horrible pains on a daily basis and I am totally disconnected from my femininity and sexuality. Since a first herpes infection (February 2018, via my bf who has an oral infection, which apparently can also be contagious without a visible flare up), I am experiencing horrible pains in my vulva.
After three herpes breakouts in a row, the herpes eventually healed, but I kept feeling tingling, burning (vulva and anus) and sometimes even the feeling of needles prickling in my vulva. At first it were episodes of pain, but during 20 wk prengancy, it became worse and worse and on a daily basis. I even started to feel tingling and the feeling of electricity in my buttocks, thighs and legs. Initially the gynaecologist and dermatologist thought it was post herpeutic neuralgia, but recently diagnosed me with generalized vulvodynia. I have tried medication (amitriptyline and gabapentine), but nothing seems to work.
I have stopped taking the gabapentin and are still on amitriptyline 60mg and valacyclovir. My new gynaecologist wants me to stop taking the medication under the supervision of a sexologist. Also because I would like to become pregnant again in the future. I dont think this will happen in the very near future though because its pretty impossible to get pregnant without having sex, and besides, I am not sure that I will be able to raise a second child if my condition stays as it is right now. My first appointment with the sexologist is in two weeks.
I havent been able to see a patern. sometimes it hurts a little less when I have my menstruation, sometimes it doest. Sometimes its not there for one to two days max, and then its back again. Mostly it hurts extra while sitting, sometimes not... I guess dont have to explain how I feel about my life right now.
I've read in previous posts here that some experience more pain when blood or discharge touches the vulva. I have the same experience. And also, all medical creams and even pure vaseline / peteoleum seem to make the burning worse.
I would like to thank everybody here, especially suki for sharing your stories. Your stories give me a little hope for the future. I've read such terrible stories of women who suffered 10, 20, 40 years from this condition. Some stated that they were 'happy' that they were older when they had their first symptoms of vulvodynia because they could not image how they would have been able to raise their kids if they would have had this when they were mothers of little ones. Well, here I am, still standig, but for how long. I just dont know.
Suki_girl missy97385
Posted
Hi missy. I'm so sorry to hear that you have this horrible condition. Before I had it I did exercise boot camp, swimming, belly dance and bike rides. I had to give all that up. And sex, of course. That is very important - to stop everything that aggravates it. Only then can you start the long journey of curing it. You sound like a strong person. I'm sure you can do it.
You say you cannot tolerate any creams or ointments on there. Have you tried coconut oil or Yes oil based lube? Those were the only things I could tolerate and, by moisturing the area helped a bit with the pain.
Don't read the horror stories online. I have found that with medical conditions it is mainly those who are having a bad experience who post online. Of course it is. Why would you post when you are fine and healthy! Once I was pain free I stopped visiting these forums. But then I thought, no, women need to hear that it is not all doom and gloom, that you can be pain free again. I have been private messaging several women over the years and guided them to pain freedom. It is possible.
missy97385 Suki_girl
Posted
Thank you Sukri, this means so much to me. Sometimes I think I should stop doing anything and just lie down on my back for a few years until someone tells me that this nightmare is over. Also I know that going to work, where I will be sitting behind my desk for most of the day, isnt going to help me. It probably makes it all worse, but I dont want this condition to take away my job too. I also need the salary to keep everything at home up and running, and to pay all the bills for the creams, underwear, pills, books, yoga classes, acupuncture, et cetera, et cetera, for recovery. Its so difficult.. if I knew that this lying down thing would be the solution I would call my boss immediately to tell him I will be sick for the rest of the year, and I wont be back before I am cured completely. Can I private message you sometime if everything in my head gets darker than dark again?
missy97385 Suki_girl
Posted
Haven't tried the yes lube yet. Might have to get me this lube, because even the cold pressed organic coconut oil irritates when I apply it. As I am writing this I think that maybe everything putted there will irritate because I have to touch my vulva to apply it.. aaah
missy97385 Suki_girl
Posted
Oh and, what about shaving..? I'm having this shaving dilemma every three to four days. I guess shaving isn't a really good idea, but when I don't shave I can almost feel my hair growing and the hairs feel like little needles in my skin.. sometimes I think it's better to remove all hair with laser/ipl, or wax every month, but I think all these options are non supportive to my recovery. Even letting the hair grow. Right now its freezing in the Netherlands and I am sitting on an iron bench waiting for my train to come. The bench is so cold that I cannot feel my vulva anymore. I need this bench at the office 😃
Suki_girl missy97385
Posted
I know exactly what you mean. In fact, at the beginning I did spend most of my time in bed feeling sorry for myself. The thing is once you find something that helps and you feel a slight improvement, that gives you hope and the strength to keep trying. For me that was saginil gel (the only other thing I could tolerate and actually took the edge off the pain).
Feel free to private message me any time.
marina91325 missy97385
Posted
stop shaving for now, i did. and no soaps and etc, but you probably know it already.
missy97385 marina91325
Posted
Hi Marina, Thanks for your tip. I haven't used any soaps or other than medical creams, and about the shaving.. I keep trying to get past that point when needle sharp stubbles grow into longer hairs, but until now, after a few days of extra pain and irritation, I have had this strong urge to release myself from it and shave. I guess I will have to try harder this time.
missy97385 Suki_girl
Posted
Thanks Suki,
What I also find very confusing is that the pain and irritation can differ like day and night. One day I only feel intens burning in the vulva, the other day I feel tingling and burning in the vulva and anus, then raw and burning, sharp needles stinging and today its mainly needles stinging, itching (?!) and burning around my clitoris. Its also more red than usual and a bit swollen.
I find the itching pretty scary, because my doctor, here the one you see before you can make an appointment with a specialist in a hospital, told me that she thought I had lichen scleroses. She even told me that she thought the architecture of my vulva had changed.. she said she was pretty sure and she wanted to prescribe me corticosteroids, but when the first specialist saw me he said he didnt see any strange things, just small inner labia. The second and third specialist came to the same conclusion. Also a biopt came back negative. When I told my doctor about these result she said something like "well, I have a few patients with LS so I know what it looks like and besides, a biopt isnt always reliable. When you have LS for a very long time they might not see LS in the results of the biopt." ... aaaargh 😦
I also really hope that this is not a sign for an upcoming herpes outbreak again since I strongly believe that this was the trigger for my vulvodynia journey.
Suki_girl missy97385
Posted
I carried on shaving, using saginil wash gel. But i dont really have hairs on the inside of my outer labia so i didnt shave anywhere near my painful area.
Suki_girl missy97385
Edited
Hum, difficult. I dont know much about LS or herpes. I didnt get itching with my vulvodynia, but I know that others do. Mine also didnt fluctuate - always the same constant burning. Others, however, have reported having good days and bad days.
marina91325 missy97385
Edited
hi Missy, the hair will get softer after (the needle) period. i always was shaving before , but after i got vulvadiniya , i stopped . i am just too scared to start shaving again. i trim them with scissors 😃 and no soaps, gels , cream and etc in that area , only olive oil sometimes.
missy97385 marina91325
Edited
Thank you both, Marina and Suki! Much more helpful and understanding comparing a lot of doctors that I have seen so far. For the shaving part: unfortunately I do have some hair between my outer labia. I wish I had never shaved it, so that this wasn't one of my problems right now. There is enough to cope with already, 😉
It's weekend now and I have just promised my acupuncturist not to think about my condition too much and if so, than I should do some breathing exercises and meditate. I find that really challenging, but I will try my very best. Have great and healthy weekend!