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
katie26785 Suki_girl
Posted
Just to let you know that I saw a neurologist yesterday she thinks there may be a trapped nerve in my pelvis so she is sending me for another MRI as the one I paid for only showed limited images as it was more for my back, she said if all comes back clear she’s putting down to hypersensitive nerve endings which is managed by amitriptyline. Will let you all know the outcome x
Suki_girl
Posted
Hi all. I haven't posted on here for a while. I have been busy responding to private messages and pleased to say that a few of those that I have been advising are now pain free!
There was some dispute in this discussion as to whether I was actually cured because - although I have been completely pain free for about 4 years and can wear underpants, sit normally, have sex - I am still on amitriptyline (stayed on it for fear of the pain returning and then to help with menopausal night sweats). Well, over recent months i have been very gradually reducing my dose, by 5mg every month. I was on 50mg and I am now down to 30mg without any return of pain and without any serious side effects. The only side effect I have experienced is extreme exhaustion for about 2 weeks after I lower the dose.
katie26785 Suki_girl
Posted
Wow thats brilliant. I am so pleased for you.
I am still increasing the amitriptyline currently on 70mg and have been advised by my specialist to increase every two weeks until the pain had gone and then to stay on it for several months. I feel like alot of it has gone apart from one area which is still quite painful. I also have rectal diazepam for when it is particularly bad and currently having body stress release therapy. If you go to this link it will bring up a leaflet with information it apparently has good results and the lady i see treated 136 women last year alone with this condition and the majority are now pain free. I just thought i would share with you all. I have only had 2 sessions so far so still early days but feeling positive.
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rachel1million katie26785
Posted
That sounds like good news all round. My problems are mainly just pain in a single area now too. I am still seeing a physio and she recommended an eas z magic glass wand, this is good for topical relief but also good for stretching pelvic muscles which i am finding helpful as i still get flare ups.
I want to try and come off gabapentin soon as have read a lot about how addictive it is, not sure if i'm ready for that though...
Another thing i am surprised to find has really helped is vagisil medicated cream, i bought it in desperation one day when the description on the box basically described my symptoms! it has a small amount of lidocaine, it doesnt burn like my previous experience of lidocaine and is really soothing. really interested to hear more about body stess release Katie! Good luck.
linda41401 Suki_girl
Posted
hi Suki
Just thought i would let you know that I am now off my Nortryptikine completely now, i reduced to 5mg but stopped it 4 days ago with no return symptoms. It feels so great to be completely cured now, and being able to enjoy life again. I am so happy that i found this site months ago and with all your help and asvice am now cured.
I have also been private messaging trying to help others and see others returning to normal again.
Thanks for all your help and advice, I honestly feel it was the meds that were the greatest help. Im sure they helped my brain forget the pain and so once off them it didnt return.
Hope you manage to get to zero meds soon.
Linda
susan05495 katie26785
Posted
I am on 150 mg if amitriptiline , i was so depressed about the pain my doctor upped it up to work as a pain reliever and anti depressant . ive been clear for 4 years and just had another episode following chest infection . ibuprofen works and toik 4 times a day for 3 days and it went away . stopped ibuprofen and it came straight back.
mine isnt touch stimulated . Its a constant burning . Touching with cotton bud or intercourse doesnt affect it . After 4 years thought i was free but no its back !
katie26785 Suki_girl
Posted
Hi Rachel,
I have sent you a private message
Katie x
susan05495 Suki_girl
Posted
Ive had vulvadynia for 30 YEARS! the attacks come and go . my worst epsisode was 20 years ago when the episode had lasted 2 years and i told my GP IF I didnt get help i was going to kill myself . i got a diagnosis and a combination of using emulsifying cream , amitryptiline and anti histamin cured me . Over the next 20 years episodes came and went some lasting a week , some a month and sometimes only a day.
I strongly believe my symptoms are linked to hormones . Going on contraceptive pill in my 20 s sent it hay wire . im now 54 and on HRT and have had no episodes for 4 years . Im sure its hormones because I have a very strong odor that comes from my vagina for one day . The next day the vulvadynia arrives and the smell is gone . Has anyone else had this? My symptoms are intense burning . Touching the area or intercourse make no difference. My newest episode has arrived after bad chest infection ,laryngitis and intense stress . Ive immediately started steroid cream and ibuprofen that immediadely kicked in and damped it down . I stopped the Ibuprofen and it immediately came back . Feeling really low that ive been pain free for 4 years and being ill has bought it back .
marie55894 susan05495
Posted
I was told my symptoms were linked to hormones after self diagnosing myself with Vulvodynia. I just found this out a couple weeks ago after speaking with a Holistic doctor so you may be on to something. She told me to make sure I get plenty of sleep and try hard to regulate the stress in my life. She also told me to eat lots of protein, exercise at least 30 mins. (5 x week) which will help with the stress levels and at my own pace just basically doing a brisk walk. Avoid sugar, eat good fats (salmon, eggs, avocado etc.) and don't overeat or under eat I was under eating at one point because I didn't know what to eat after being diagnosed with so many food allergies which I need to revisit the allergist because it seems like there's more now or my body is just reacting to eating the same thing over and over which she said i shouldn't do to eat in rotation. Drink plenty of water and stay away from sugary drinks and she said to drink green tea without sugar. Also food high in Vitamin C and D. Some foods she listed was Almonds, Pears, Bananas, Peas, Black beans, Broccoli, Popcorn, Chickpeas, Veggies, Pasta, Oatmeal, Pumpkin Seeds and thins like that. Hope this helps someone. I can say that before when I was doing right (eating and following what Suki did) I did see improvement.
susan05495 Suki_girl
Posted
Thanks for all the info . My doctor is not convinced that i definitely have Vulvadynia as she tried the touch test and i had no pain .
However having penetrative sex sets it off .
I saw a specialist when i had an attack 5 years ago and she said i did have it .
My GP is thinking its due to a lack of Oestrogen and i am currently trying a HRT regieme .
i find ibuprofen and Lidocaine give me enough relief to get through the day . Some days the burning sensation is horrific and other days bearable. When i wake up in the morning i have no pain but as soon ad my nerve endings wake up the pain starts up.
Has anyone else experienced constant pain but doesnt react to the touch test ?
linda41401 susan05495
Posted
hi Susan
Just to let you know, when I went to my GP first, she had no idea what was wrong, and said it was hormonal thus gave me HRT suppositories to use. They did nothing for the pain. She did no touch test, but i do know that touching that area caused no pain, it seemed to be internal. Inserting the HRT internally caused no pain either. My pain was constant and burning and very upsetting.
I then paid privately to see a Gynocologist, she straight away diagnosed it as Vulvadynia. She did a touch test which didnt hurt, but she told me that sometimes that is normal with vulvadynia, some people react to touch, others dont.
She started me on Nortryptiline at 10mg, i slowly went up to 40mg, by which time, after 4 months the pain has gone. I have since reduced slowly and am off all medication now and am entirely pain free. I do still take the HRT though, as she said hormones may have initially started it.
susan05495 linda41401
Posted
Thanks so much for your reply its really helpful.
im sure its Vulvadynia as lidocaine really helps .
ive been in HRT for 5 years and only recently started bleeding . DR thought i wasnt getting enough Eostrogen so has put me on pessaries . Im going to ask for private referral after your comments .
Thanks so much
Suki_girl susan05495
Posted
vulvodynia can be a constant pain or provoked by touch. I had both but some women have one or the other.
donna84705 Suki_girl
Edited
Hi, Ive suffered with vulvodynia for over 40 years on and off, ive had very long periods of no symptoms at all (almost 10 years once) and months on end with varying degrees of pain and discomfort, sorry to sound negative but to say shes been cured is missleading....If any of you are on Facebook I recommend joining a private group on there called The Vulvodynia Support Group, there are over 5k ladies with this awful condition, all with fantastic advise and support, it had literally been a life saver for me and many others x
Suki_girl donna84705
Edited
Hi Donna, I appreciate that some women can suffer from vulvodynia on and off for many years but there are many circumstances where, if you can find and eliminate the root cause and become pain free then you can consider yourself cured. If you read through this discussion you will find some instances of this. For example nerve entrapment, tight pelvic floor muscles, hormones (being on the contraceptive pill or perimenopause), infection, food allergies. There is also a psychosomatic element to it, so if you think you will never get better, you won't. Positive thinking can be a crucial factor for some women.
susan05495 Suki_girl
Posted
Don't be scared to try lidocaine . i could not get through the day without it . i need it 3 times a day and its a lifesaver . I put a pea sized blob on cotton wool that stays in place held in by under wear . I am now also on OESTROGEN .
rachel1million donna84705
Posted
thanks for that Donna, will look up the group. i've had some soreness since childhood and don't think i will find a total cure, but do want to keep truing things which may help!
Suki_girl susan05495
Posted
I am pain free now, have been for 4 years. When I was in pain lidocaine sting me and I waited to see if it would subside but the stinging got worse and turned into severe burning.
linda41401 Suki_girl
Posted
I am also now pain free, plus off all medication too. I am hoping it never returns but should it rear its ugly head agsin, i wont panic like before as I know i can beat it again. I class myself as cured. Its a bit like the common cold, you get cured of that eventually, but it can also occur again. Any illness can reoccur but it doesnt mean you arent cured. I swear by Nortyptiline and also the acupuncture helped too. But i believe stress is the worst thing for vulvadynia, mine only got better once i took away the stress and panic and began to believe it could be cured. The more stressed i became, the worse the pain got. I started doing a Mindfulness relaxation Cd every day which helped loads and also yoga too.
Suki_girl linda41401
Posted
I also did mindfulness. Stress is certainly a contributory factor. Believing you will not get better (by reading all the bad news stories on the internet) can contribute to that stress and reduce motivation to pursue a 'cure'. I tell everyone who asks for my advice not to read any of that stuff. It's difficult because, while forums can be a source of mutual support and advice, there are also people on there saying that they have had vulvodynia for many years. My consultant dermatologist also told me not to read that stuff. I have a lot of problems advising women on how to become pain free when they constantly ask me 'but what if I don't get better, what if i gave this for the rest if my life?'. I just say that such negative thoughts will not help them to become better and that it is possible to be pain free - people like you and I are proof of that!
linda41401 Suki_girl
Posted
yes definately. How are you progressing with reducing your medication?
Are you down quite low now?
I am still finding it hard to lose the weight i gained wihth the meds but i did read it is hard to lose it.
Suki_girl linda41401
Posted
I was on 50mg. Now on 25mg. Taking it slowly. Still pain free. I too am still heavier than I would like, but I am now in menopause which causes weight gain.
linda41401 Suki_girl
Posted
Thats good you have halved your dose, i also did it slowly, 5mg at a time, no withdrawal symptims at all. I put on a stone in weight, which is a lot for me, as inly 5 ft 3inches. I have gone through menopause but only gained 4 lb with that, so a stone is a lot with medication. But i read its normal but will take a long time to lose it. Better that than the pain though
Suki_girl linda41401
Posted
I am 5ft 7 and when I got vulvodynia I was definitely underweight- I was very fit and ate little (stress). The drs told me I was underweight. I can't remember what I weighed now but my BMI was just on the boarder of being too low according to our BMI scales. so, I needed to put on weight. I obviously did but I don't know how much was the complete lack of exercise (which aggravated the vulvodynia), the amitriptyline, or menopause. I am now 10 stone which is a bit higher than I would like but my body fat % is in the healthy range for my age and once menopause has passed the only oestrogen we have is in our fatty tissue.
susan05495 linda41401
Posted
HI linda after ready your posts and Suki posts im going to try to be more positive and ive started walking for an hour a day . . I'm on 150 mg of ami and have been for many years as a treatment for depression .
I've had massive stress this year as my Mum died and sorting out her estate was horrendous . Sure this has trigged the Vulvadynia . I have also been on HRT for 5 years and suddenly started bleeding again . This indicates a hormone shift which i also think contributed .
All of these means i am overweight . I weigh 12st 2 . I have managed to lose 10lb through diet and excercise but struggling to shift any more . I am the classic apple shape with all the weight on my belly . I definitely have good days where i would rate my pain as 5 /10 and others that are a 10/10. Going to try to take the positives out of good days and enjoy them
Suki_girl
Posted
But, like you say, I'd rather have the extra weight than the pain
Suki_girl susan05495
Posted
Good for you. You need that fighting attitude to beat it. Reducing your stress will help. Have you tried mindfulness? I'm not sure about the walking... I mean, great idea for losing weight and reducing stress, but any exercise aggravated my vulvodynia. Hence the weight gain - I literally moved as little as possible. When my pain started reducing I started walking - just a very short distance at first (only past a few neighbours houses and back) and gradually increasing the distance each day. But perhaps walking doesn't aggravate it for you?
linda41401 susan05495
Posted
Hi Susan
Thats definately the positiveness you need to beat vulvadynia. Walking is good for relieving stress in mind and body so keep it up.
I wonder if Amatryptiline isnt working for you if you have been on such a high dose for so long, perhaps swapping to Nortryptiline could trigger a cure. Not every med suits all people and i have read that other people preferred one or the other, I did ask my consultsant initially for Ami, but she said she has had better results with NOR. Just a thought.
I am so sorry to hear your sad news re your Mum, that is of course a very stressful time for you, something that will take time to overcome. It probably has a contribution to your vulvadynia.
Your weight gain is probably more to do with the high dosage of AMI and probably will be hard to shift until reduced and stopped. I am 10 stone but normally only 9 stone, which i have been most of my life, until i started the meds.
Try hard to enjoy the good days and hopefully they will become more often. If you havent tried acupuncture, please do, it helped me I feel sure. Also to relax do a Mindfulness CD, that will relax you, again relaxation is the key to a cure, alongside the meds.
Good luck
linda41401 susan05495
Posted
As Suki said, only do the walking if it diesnt aggrevate the pain. If it causes pain, that is not good. I am afraid, like Suki, i has to become a couch potato for several months, no exercise, no walking until it had gone. The weight has to be shelved until the vulvadynia is under control first. But Mindfulness CD is also good for stress control if walking is no good for you, everyone is different.
susan05495 linda41401
Posted
Thank you all for the encouragement . .I will try mindfulness CD . walking works for me , I hate the gym . Due to see GP in 2 weeks will ask about NOR.
I know i should heed warnings about lidocaine but its the only thing that gets me through the day . Going to cut down as much as i can
rachel1million susan05495
Posted
I'm sorry to hear about your mum Susan, it must be a really difficult time for you.
I exercise because it definitely helps with my mood and managing stress. It probably does aggravate things at times but then so does stress so guess you have to weigh it all up and find what works for you! I think my symptoms have improved over all since i started exercising regularly as i think it helps me not be in a feeling sorry for myself mindset!
Take care x