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). 

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  • Posted

    Hey suki girl. I replied to this last month. I am doing better again. Yet still have some symptoms. Id love to be able to have a chat with you. Do u have instagram or facebook or even email. Or is there a private messaging on this? Just wanna ask u a few things im oretty anxious. Thanks 😊

  • Posted

    Hello again Sukigirl...... What a lot of helpful information there is on this thread.  Since we last spoke, I have seen the consultant dermatologist at Guys in London who specialises in vulval conditions.  She is on the NHS.  I live in Dorset and my GP would not refer me, so finally went in and burst into tears, which did the trick.  He did not want to refer me out of the county.  I  had to wait nearly three months for the appointment. The consultant was extremely clear in her diagnosis of vulvodynia, so at last after eighteen months I know what it is.  I also had pelvic floor spasm, which has been helped by a pelvic physio over the last year.  So what to do now?  My main problem is with sitting which of course affects 80% of what we do.... Travelling is tricky but trains are better than cars as I can stand a lot.  I use yes oil based, and coconut oil to soften and soothe.  Have tried various other things for the vulval area, and unfortunately those and the Saginil did not suit me.  I will try the water intake and emollient now. Also giving up the tomato family.    I am also seeing the local community pain team and doing an eight week course on meditation to re train the brain.  Taking diazepam (muscle relaxant) helps the nerve pain and the specialist told me to treat it pro actively rather than reactively so now on it every day, and it helps.  If after three months I'm no further on will give the Nortriptiline another go, as specialist said I hadn't been on it long enough before or at a high enough dose.  Acupuncture helps, like you, and I have that monthly.  If anyone wants the name of the guys hospital specialist please contact me privately through the website.   Am happy to help.  Good luck to all you ladies.....perseverance is the key and don't take no for an answer!  GPs know very little about this condition and seemingly care less.  I find meditation hugely helpful and its worth trying head space app which has lots of different programmes.  Also metta  meditation is good.  Lots on utube. Keep trying till you find one you like.  Will let you all know how the eight  week course goes, starts in March..... This is also on the NHS but again I had to persevere for a  year to be referred to the Dorset community pain team, which is multi disciplinary.  Interestingly I saw doc boyle  as above, and asked her if it was vulvodynia and she said no!!  Many thanks for all your helpful input.

    • Posted

      Hi Clariver, thanks so much for your update, glad to hear things are moving along for you.  I just wanted to urge you to try giving up potato as well as tomato: potato was the trigger for my vulvodynia and nobody thinks about it being dangerous as so many people eat it and it's a staple.  But that's what did it for me, and giving it up gave me total relief.  

      Minamii

    • Posted

      Thank you Minamii..... I have looked up the list of nightshade foods, and having worked for a homeopath many years ago, it is all coming back to me!  I do also see a homoeopath, although so far nothing has come of the remedies for the vulval pain.  We are reviewing next week, and maybe he can come up with something for the neuropathy part..... I was reading about  mistletoe recently which was used by the Druids as a nerve relaxant!!  I know mistletoe is used homoepathically for cancer with some success.  I'm afraid it is all a bit trial and error.  Maybe someone should put a book together with all the recommendations on this post line!  How about it Sukigirl?!  Thank you both for your suggested. Best wishes and a better 2018. 

    • Posted

      Well done! Keep at it. The only way to beat this think is determination and trying everything. The triptylines do take a while to kick in. I had acupuncture every 2 weeks, I’m not sure that every month is enough for the benefit to last until the next session. Also try the manual desensitisation it makes perfect sense for retraining the nerves to feel touch as touch and not pain.
    • Posted

      Hello Clariver

      I am interested in seeing the consultant dermatologist you saw at guys in London are you able to give me a name please?  My vulvodynia has returned after 6 free years and I dint know why!  Many thanks xx

  • Posted

    I dontlove hace pain on touch husr a light burn in general area and crawling itch and some times rawness. Did u have any of this? Ye im on the med 3 months but only at 25mg. Did u have setbacks during recovery. I feel back to square one after a week of bad anxietyx
    • Posted

      I hadn’t a few setbacks. With my treatment plan there was slow recovery but I did have occasional blips. I tried to avoid anything that would aggravate and set me back, but sometimes they are unavoidable. My already delayed Pap smear set me back to square 1. I also had some bins that set me back a few weeks such as too much walking or exercise, stress, getting thrush. These setbacks can be disheartening, Utd as long as you continue with your treatment regime the should be an overall general slow improvement.
  • Posted

    Hi Suki Girl,

    I came across your story whilst trying to investigate ways to help solve my lady issues.

    I have been suffering from soreness, burning, irritation, redness the whole lot for 6yrs!!! I am now at the end of my tether and need a solution.

    Mine all started fro using tea tree oil in my bath one day, few days later I was in a whole world of pain, soreness etc. Since then I have been to see endless amounts of GPs and Clinicians. I have been told its dermatitis, lichen sclerosis and one Dr did actually mention Vulvodynia but never advised me on any treatment.

    Any cream I was prescribed or any home remedy I tried sent me through the roof and I would react to anything as if I had an allergic reaction so I assumed it must be allergic dermatitis. I finally had a biopsy done which just said I was inflamed.

    I have tried almost everything, washing my knickers in a very sensitive wash, not letting any soap, shampoos etc run down me in the shower, wearing the most unattractive white cotton knickers, those helped ease it for a while but then it came back when I was prescribed another cream and its back to sq 1!

    I have also been reading that some people who suffer with lower back pain can get Vulvodynia and funnily enough I do get lower back pain!

    I am going to go to my GP and try and get them to prescribe something to help e.g. amitriptyline and see if it works. As much it kills me not goin to gym I need to try that too and not aggravate it in any way shape or form sad

    Thank you so much for sharing your story and everybody else that has, for years I have felt I was alone and it has got me very down xx

    • Posted

      Hello Hay, I'm so sorry to hear of your situation.  I do hope some of the excellent comments on this site will help ease your problem, and do please try the one which completely cured my vulvadynai (cutting out all solanacea vegetables from my diet, including potato, tomato and chilli - it turned out I was allergic and no longer eating them completely cured me), but do know you're not alone and we're all here for you to talk to.

      Minamii

    • Posted

      Thank you so much for your message Minamii, really appreciate it.

      I will try that, at the moment i will try anything. 

      I have been reading up on vitamins that help with nerve damage and they say Magnesium and Vitamins B12 are suppose to help. Whether or not they do I dont know yet. 

      Eating blended green veg is also suppose to be good e.g Cucumber,Kale, Broccoli. 

      So I am going to try all I can and see what makes a difference. I will definately try cutting out solancea veg and see if that helps. 

      Thanks again xxx

    • Posted

      I am afraid that you will have to give up the gym, yes. Exercise just aggravates it. Once I felt the treatments were working for me I started going formshort walks - just past a few houses in my village at first then gradually building it up. Try wearing no underwear - anything touching that area aggravates the nerves. Try using natural oils to lubricate and reduce friction from moving around. I found coconut oil very soothing. Yes oil is also good. You are doing the right thing with the showering and washing. Like me, Medical creams seem to make you worse, so stop those completely. Having said that you might want to try the saginil gel which is based on natural plant extracts and really helped me - for some women it it the miracle cure. I also took loads of suppliments that are naturally anti inflammatory: turmeric / curcumin, quercetin, Resveratrol, ginger, bromaline.

    • Posted

      Thank you Katie! I am seeing the GP on wednesday so i will try and get referred. 

      Does anyone seem to feel sore inside your vaginia aswell as externally? I have had swabs which checked for infection etc and they came back negative. Today my pain has gone from inside to the outside! 😩 i cant keep up!

      But i honestly cant tell you how grateful i am for your message. This forum has been a life saver!! Xx

    • Posted

      Thank you for all your amazing info! I said to Katie this forum has been a life saver. 

      I would love to try the coconut oil but im petrified of the reaction i may get. Everything i try i end up in agony along with swelling etc. But i guess i need to try everything! 

    • Posted

      Yeah, try everything now rather than later cos you may try it later and regret is because it sets you back. Acupuncture doesn’t live up to all it claims but what it is very good at helping with is lower back pain and neuropathic pain like vulvodynia.
    • Posted

      Hi Sukigirl and other ladies, 

      I’ve been suffering vulvodynia since November, and the same time around late November I start feeling uncomfortable after poop, and I was diagnosed with minor Hemorrhoid and occasionally I feel some sort of anal pain which feels like nerve related. It’s a bit strange since I hardly have issues with constipation.

      Just wondering whether it is somehow related with Vulvodynia.

      Does anybody have insights/info or similar experience where one feels anal pain besides vulvodynia?

      Thanks ladies! 

    • Posted

      My vulvodynia also involved the perineum, so extended from the posterior of my vulva to my anus but not inside the anus itself. It sound like yours may not be due to trauma of the nerve endings but perhaps a problem with the nerves coming from the spine to that area and you may benefit from yoga poses and physiotherapy to free up those pelvic nerves. Yoga positions include the happy baby pose and apanasana.
    • Posted

      Once again, yeah!  That presented in me as a nasty rash all over the area, before the vulvadynia got going.  It was the first sign I had that something was not quite right, but I got relief by using extra virgin olive oil on the area.  Now that area still gets sore and rashy if I eat the foods that set off the vulvadynia. 

      Minamii 

    • Posted

      Hey . Yes it couldis defo have, something to do with it. I would meetb with a womens physio pelvic floor therapist. It could be that you have hypertoned pelvic floorfloor muscles thatare are compressing the nerves. This can cause an itch sting burn and hemeroids! These sspecialists are the main line of treatment for vvd x
    • Posted

      U dont need to get referred to womans health physio. Google one in ur area and ring and ask if they treat vvd! It was the best thing I ever did. Somtimes I get stinging or itching just inside vag opening. This can be from tight muscles in pelvic floor. Believe it or not the muscles can be so tight on the nerves. This irritates the tissues and causes swelling! Hope this helps. And I wouldn't put anything down there yourself wait till u see the pt they target it as a whole even withif diet! X

    • Posted

      Thats great thank you Katie. I will keep you posted Xx
    • Posted

      Katie, did you go to a physical therapist? If so, did you see results ?

      Starting therapy next week 

    • Posted

      I don’t get pain in my anus but I have noticed that if I have irregular bowel movements (like constipation or something) I feel more pressure in like my perineum and vagina. I’m assuming it’s bc it’s all connected and in the same area
    • Posted

      Dear Sukigirl and Katie42541,

      Thank you for the enlightenment! Yes I could suffer from hypertoned pelvic muslce. I emailed Alison Buehler, an author who wrote ‘Rethinking Women’s Health’ and she herself suffered vulvodynia for many years, she said my symptoms could be related to Pundendal Neuralgia, and she advice me to have physical therapy, chiropractic and decrease inflammation overall.

      Had anybody has experience or any info on an issue called Pudendal Neuralgia?

      Thanks for sharing ladies. This forum really blessed me ??😁

    • Posted

      Hey yes ive recovered over 50 percent with physio and have more sessions to go. Its the mainline of treatment forfor vvd and all my pts patients have recovered. I dont think the internet depicts the realistic version of vvd. People have it and get better. All you tend to read about is the bad stories like any other condition on th internet
    • Posted

      Hey Katie, I know it’s been months since this was posted but how did you do with the physiotherapy? Im starting in a few days! My gyno said it’s the BEST option for vvd bc it treats and heals rather than masks the pain like pills do. I’ve had on and off burning down there for a few months. Goes away for a week and then comes back so I’m thinking the muscles and nerves aren’t happy down there (I also had an AWFUL infection). How are you now? And how long did you do the physiotherapy for? 
    • Posted

      Hi Laj,

      I had physio therapy last year which I didn’t find helpful in the end and did not get to the root.  but I’m now with another women’s health physio which I started in April I’ve had 4 sessions with her so far, last month I noticed an inprovement where I had nearly 3 weeks of no pain whatsoever. This month however is a different story and feel like I’ve taken 10 steps backwards. Apparently this is not uncommon and I have been told that it is possible to fully recover but this can take a whole year with ups and downs. I see my physio once a month but do the stretches and breathing exercises she has given me every day, she also does internal massage too, to see if there are any tight areas. I have a tight piriformis and Internus obteratur muscle which could be trapping my pudendal nerve which can cause  vulval pain. I’m finding it very hard to stay positive after my set back this month so the vulval specialist has given me 10mg of Amitriptyline to help she also suggested that I use Ice and lidocaine (local anaesthetic) as this also helps she advised that I also stick with the physio therapy as she has seen patients with some great results one patient who has been pain free for 4 years and is still going strong. Good luck with your physio. Let me know how you get on x

    • Posted

      Sorry I thought it was me you were replying to but I can see it’s another Katie 
    • Posted

      can they put you on Lyrica? It is the holy grail of vulvodynia medication ... I know it has sadly been classed as Class C by the government (what do they know), but you may find an intelligent doctor who understands it is efficient in treating this.

    • Posted

      Ive been to see a Consultant Gynie

      who has adjusted my HRT and i have now been symptom free for 2 weeks . I found using lidocaine 5 % a life saver . She told me i could use it every day for rest of my life if i had to . Since shes increased my Oestrogen ive been a new woman

    • Posted

      hi, can I ask what your symptoms were and how old you are? xx

    • Posted

      Take care with lidocaine. I was told that it is not for long-term use which can cause you to become hypersensitive to it.

    • Posted

      in the UK they put us on amitriptyline, amitriptyline or gabapentin which are similar drugs to Lyrica - all act on neuropathic pain.

    • Posted

      hi Shaz im 54 and my symptons were burning and sometimes intense itching . i was diagnosed 10 years ago by DR Sallie Neill . My private gynaie said DR Neill is the leading authority on vvd in the Uk .

      Dr Neill put me on amitriptiline and it worked . I had relapse 3 months ago and my GP was useless so went private to see gynaie . Now im on OESTROGEN gel and its given me pain free for 2 weeks . Lidocaine was a lifesaver and its in extremly rare cases that you can become sensitive . Sometimes i use it once a week and some days 3 times a day . Havent needed it in 2 weeks . i think the leading authority in the Uk on vvd knows what she is talking about when she says using Lidocaine helps and is the best treatment . You will feel an intense warming sensation when you apply it but within 5 minutes you will be pain free

    • Posted

      I can't find her on google, which hospital is she at? thank you

    • Posted

      i saw her at Princess Margaret in WINDSOR , Berks as a private patient .It was about 10 years ago . I Saw Ann Deans at Frimley 3 weeks ago and she told me Sallie Neill was the leading authority on vvd . Ann Deans changed my HRT and told me to use lidocaine and its changed my life

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