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
debi14820 Suki_girl
Posted
Yes I got your PM. Thank you. 😃
stephani60379 Suki_girl
Posted
Hi Suki Girl,
This is very fascinating to me that you were able to cure it. I have been dealing with Vulvadynia for just under 4 years now and it is miserable. On top of the Vulvadynia I also have lichen sclerosis which causes even more itching, so eventually I give in, scratch, excruciating pain. I had seen 12 different doctors where they did a colonoscopy because it was so close to the perineum they believed it may be an anal fissure or something of that sort.. it wasn't. They did a biopsy of it and MRI, no luck either. I finally found a gyno that knew what it was, she placed me on Noretrypteline I have them in 10mg capsules and went up 10 each week until it went away or I hit 70mg per day. I found the magic number for me was 40, if I was under or above the pain came back (not sure why but I tried many times to be sure) I found this helped make the pain manageable, I was able to walk longer distances and on a good day have sex (usually had to have some alcohol to enjoy it though). Eventually I moved on and found another doctor, Denise Sweney, she finally knew what I was and how to fix it. She started giving me steroid injections into the vaginal area (this hurt a lot but is totally worth the pain!!) I was then instructed (as well as my fiancé to do internal massages to massage out the tightness in the muscles. After the muscles relaxed I moved on to the Mona Lisa laser therapy, this has been the best thing to happen to me. I had my second treatment today, I have 1 more left but I already feel like most days I am normal enough to go on hikes again or go to the gym. I feel like I have finally started to get my life back, and I honestly can't thank Dr. Sweeney and my amazing pelvic floor therapist, Amy, enough. Without their help I would still be miserable day in and day out, it literally changed my personality from being happy and optimistic to being a negative, cranky person and I didn't like it but couldn't help it. I am finally happy again, I missed my old self and thank them for helping me get back. If this is something that anyone else is dealing with, have your doctor take a seminar taught by Dr. Sweeney, you'll be so thankful that you did, and you never know how many women that doctor can help. I truly hope anyone living with this type of pain finds the relief they deserve. If you have any questions, feel free to reach out to me, I hope this helps many women suffering to finally get relief.
hay123 Suki_girl
Posted
Ever since the last lot of cream that i was prescribed it has sent me back to sq one!
On a positive note my GP referred me to a womens health physio ive also booked onto a 4 week yoga course.
I hope everyone has had a calm day and not in too much pain! Xx
Suki_girl hay123
Posted
stephani60379 hay123
Posted
Yes!!! Mine has gone through phases where it is so bad I can barely function and others where I'm relatively ok. Try logging it for a few months to see when it is better/ when it is worse. It could be hormonal, I got off birth control to see if it made a difference (it didn't for me but does for some women) this is something I was advised to do in order to help figure out the cause and address which way to go to fix it. I also sat on ice packs a lot, it helps temporarily. I always noticed I was extremely inflamed when it hurt the most and was the most itchy, this helps. I also took antihistamines to help but it didn't do enough to be worth it.
I hope you feel better!!
hay123 Suki_girl
Posted
I do need to order the saginil gel like you said its about biting the bullet and trying it, im pretty scared to though!
Going to go to the oseopath and get an adjustment too as I know my pelvis is out of line. Then i will book acupuncture.
Again Suki thank you so much for your information and replys to all the messages and to everyone else thats replied. Honestly this forum has saved me from a really low point in my life xx
hay123 stephani60379
Posted
Thank you Steph.
Yes i need to keep a diary and see what i have done to maybe of made it flare up.
Yes when mine is bad its really inflammed, red and sometimes badly swollen. 😫 like an allergic reaction.
Xx
stephani60379 hay123
Posted
That's exactly why I tried the antihistamines, I thought maybe it was swollen and puffy for that reason but it didn't help, you should try it though. Yours sounds dead on like mine, ice did help a lot as well as the Noretrypteline and really the steroid shots I had. Now the Mona Lisa laser is doing the final touches with estrogen cream daily rubbed in and I should be good. I hope you are able to find some relief soon. Let me know if this helps you.
katie42541 Suki_girl
Posted
Are u still painfree suki 😊
Suki_girl katie42541
Posted
Suki_girl
Posted
stephani60379 Suki_girl
Posted
Minamii Suki_girl
Posted
There are so many triggers for vulvadynia, I've found. Mine is definitely related to hypersensitivity in my diet, but it was definitely made worse by heat. I live in Australia, and the temperature today has been up around 44 degrees celsius (I think that's 110 or something on the farenheit scale?) as we're suffering from one of the worst heat waves I can remember. Even though I try to stay cool, I did inadvertently eat some tomato today, and I've now got a horrendous itchy rash all over, not just vulval pain but all up my stomach and chest. It'll take a couple of days to heal. If it had been cooler weather, it would have just been vulval pain, which is bad enough. So heat definitely gives me more trouble. Not much I can do about that, just be very careful what I eat and sleep with a frozen wet towel on my skin to take out some of the sting.
Minamii
Suki_girl Minamii
Posted
Nightshade vegetables, including tomatoes, peppers, potatoes, eggplant; also spinach, beets and avocados are not recommended or are used sparingly in macrobiotic cooking, as they are considered extremely yin. Some macrobiotic practitioners also discourage the use of nightshades because of the alkaloid solanine, thought to affect calcium balance. Some proponents of a macrobiotic diet believe that nightshade vegetables can cause inflammation in the body and osteoporosis.
Just thought you’d be interested.
Minamii Suki_girl
Posted
Thanks for that, Suki girl, definitely applies to me! Interestingly, I didn't know about avoidance of beetroot and avocado - but I don't usually eat them, as when I do, I tend to vomit! For the beetroot, this is a long-standing thing, first happened when my mother gave us beetroot when I was about four or five. I soon learned not to let beetroot past my mouth, because it would come back up straightaway! And the current trend here in Oz for avocado had the same effect. So I don't eat either of those as a matter of course.
Thanks!