Personal experiences of vulvodynia

The stories which follow are first-hand accounts of experiences with vulvodynia which have been generously given by women to Sally Turner for inclusion on this website. It should therefore be noted that any opinions expressed in the accounts are those of the narrators themselves and do not necessarily represent the views of the VPS. Some of the names given have been changed at the request of the narrators.

1  'Lotty'
2  'Louie'
3  Pamela
4  Brenda
5  Mary
6  'Sophie'
7  Margaret
8  Beth

1  'Lotty'

I'm 25 years old and for the past decade of my life I suffered horrifically from vestibulodynia. I say 'suffered' instead of 'suffer' because the problem has finally been resolved. I know that is a very bold statement, and that if you're currently in the grip of the condition yourself you're probably reading this article feeling sceptical, desperate and emotionally exhausted. I know only too well how you feel.

For 10 years I couldn't even bring myself to look at this site; I couldn't associate myself with a condition I didn't want and wasn't prepared for. But sitting in my room tonight - happy, healing and having enjoyed fantastic sex at the weekend - I am telling you there is hope.

I first became aware of my condition at the age of 15 when I tried to use a tampon for the first time. The slightest pressure applied to the entrance of my vagina caused an awful stinging sensation, as though I'd just been stung by a bee or was rubbing salt into an open cut. From then on, the pain never subsided. Sex was excruciating and having to lie with ice cubes applied to my vagina after intercourse didn't exactly leave me, or my partner, feeling sexy or satisfied.

Everything looked perfectly normal, but that only added to my emotional turmoil, as I found myself again and again trying to convince doctors that there really was something physically wrong. Or was there? From the word go the sense of guilt was overwhelming. Time and time again I was told to just relax, that the pain was being caused because I was tensing up. Inside I was screaming, 'No, the pain is being caused because there is something wrong with the skin or the nerves in that area!' Of course the pain was causing me to tense up and so contributing to my discomfort, but that was a natural secondary response.

Over the years I tried every treatment that was offered - pills, creams, anaesthetic creams, injections and plasters, dilators, physical therapy, the low oxalate diet, lots of water, counselling - you name it, I tried it, but still the problem remained. At the time I was a young girl who didn't know which way to turn, but as a woman looking back on events I'm appalled by some of the treatments and advice I received. One highly recommended physical therapist told me that having a baby would really help to ease my pain as it would widen me, and did I realise that I was at the perfect age to conceive? I was in my late teens at the time. Another highly regarded counsellor told me to prepare for the fact that 'sex just might not be for you'. 

I was eventually referred to the Royal Free Hospital in London, and that's where everything changed. For the first time ever, the specialist didn't need convincing. She acknowledged my symptoms, both physical and emotional, and diagnosed the condition as vestibulodynia (or 'vestibulitis' as it was known back then). Around six months ago I was operated on to remove the affected skin around my vestibule (entrance to the vagina) and I'm happy to report that, for me, the operation was a success. The skin no longer stings to the touch and I'm finally able to enjoy painfree sex.

I worry that until the medical world is more aware of this condition, sufferers will continue to be passed from pillar to post until they receive the treatment they need. This has to stop. Vestibulodynia is a real, clinically-acknowledged medical condition and it can be treated effectively; sufferers just need access to the right treatment for them.

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2  'Louie'

I’ve had vulvodynia for the past five years. I’m 65 years old, I live in Spain and I’ve seen 11 different doctors and had 13 examinations. The symptoms began around the time my boyfriend died and it was a time of great worry on several other fronts too, so possibly this had something to do with it. I mention this just in case any other women note that it started for them at a time of great stress too. Though almost everything is hunky dory in my life now, so if it was stress that started it, why am I not better now? The discomfort is exactly the same as it’s always been, but now I know how to cope.

When I first had symptoms, I went to my GP who said: 'Oh yes, cystitis.' Months ensued during which various antibiotics and products were tried with no effect. I started to get worried and to doubt my sanity. I was so frantic one day that a visiting friend took me to A&E at the hospital. A gynaecologist there said he thought it was lichen sclerosus – I was actually pleased because I had a name for it!

The day of my long-awaited referral to another gynaecologist arrived. She said I needed a D&C and a biopsy. A social worker friend was so worried for me that she made an appointment privately with a doctor friend. The doctor examined me and said: 'I have seen LS and this ain’t it.'

In September 2007 I had a D&C done, but no biopsy. In November that year I did an internet search for 'vulval pain' on my newly acquired computer and discovered I had idiopathic vulvodynia. I realised I was not alone; I had found the Vulval Pain Society - gloria!

I told my GP I wanted to try tricyclic antidepressants and took them for about three months. They stopped the discomfort to a degree, but I greatly disliked the side effects and gently came off them. My GP counselled patience: 'It just came, it can just go.'

Over the next few years I tried other treatments and lots of different doctors; a psychologist was very helpful and perceptive and I joined in all the studies I could find. I had another go at the tricyclic antidepressants, but experienced the same panic and disorientation. In July 2010, in England, I saw Dr Nunns who was very kind and said that some of his patients had reported a certain amount of relief from acupuncture; I tried it but found it to be a horrible experience.

Eventually my GP suggested Prozac, an SSRI antidepressant: 'It won't cure the vulvodynia, but you won’t feel so bad about it', he said. He was right. At first the dose was too much, I was very high and excitable, but now I take a half-dose every other day and am much more secure.

My last boyfriend died and I am 65 anyway so I haven't got the dreadful sex worries others have to deal with. I have learned many coping strategies: much sitting on the floor, always wearing full skirts, keeping very busy and lots of bidet use. The worst thing is that travel is a big problem and of course sitting at the cinema, concerts, or restaurants and playing the piano is difficult. And I can't wear tight clothes to show off my nice figure! But having heard what other girls with vulvodynia have to put up with, I feel I hardly have a problem at all.

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3  Pamela

After years of pain with vulvodynia and five years of unsuccessful treatment with amitriptyline (a tricyclic antidepressant), I eventually sought acupuncture treatment. I am amazed at how successful this has been and it has almost got rid of the symptoms after six sessions. After years of pain it is wonderful to wake up and remain pain free. I would recommend finding an acupuncture practitioner with experience in treating vulval pain; although I know it does not work for everyone, it is really worth a try.

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4  Brenda

My problems began in 1979 when I was prescribed pessaries and creams to treat a vulval thrush infection, following a course of antibiotics. During the next six months, I was prescribed many different pessaries and creams. My discomfort changed during this time and I remember asking doctors if I could be sensitive to my medication. The answer was always 'No'. I was finally prescribed another course of pessaries and was told this was a 'kill or cure' remedy. I was to take them for two weeks. After the first week, I went back to my doctor complaining that the discomfort was worse, but he told me to carry on. There was no one else to turn to then – no VPS and no female doctors. After two weeks my doctor  examined me, realised how sore I was, and sent me to the Royal Liverpool Hospital.

I was admitted to the hospital for a week, undergoing various tests (diabetes, thyroid etc). I then had a D&C, a skin biopsy, and alcohol injections, supposedly to numb the vulva, all under general anaesthetic. All the tests came back negative and the injections didn’t work. I was then referred to a psychiatrist. This was my lowest point – I felt abnormal. I was convinced I’d never have children because sex was so painful and my menstrual cycle had disappeared because I’d lost so much weight during this time. To my relief, the psychiatrist said it was not a psychiatric condition and sent me back to Gynaecology. But I’d lost all faith in the medical profession, so I went to see a herbalist, and thankfully my menstrual cycle returned, and I was able to have my two children: an experience that saved my sanity. I found I was more comfortable during this time because I was producing more oestrogen – a hormone that improves the skin dramatically.

In 1994, I was referred to a female dermatologist in Sheffield and she diagnosed vestibulodynia. She prescribed Trimovate (a combination steroid, antibiotic and antifungal cream) and I also began using an anaesthetic gel. But it wasn’t until 2006, when my husband and I went to a Vulval Pain Society meeting in Bath where Dr David Nunns was a speaker, that my life changed. I realised that, at last, someone understood. David has given vulvodynia credibility - the doctors now believe me when I explain my problem. 

I have seen a physiotherapist and was given exercises to strengthen my pelvic floor muscles. I can’t say this helped my vulvodynia, but for those of us who’ve had children, a strong pelvic floor is important. I now take 50 mg of amitriptyline each evening, which desensitises the nerve endings, and sex is comfortable, sometimes fantastic, using Instillagel (an anaesthetic gel), and the lubricant Sylk or Senselle. Strangely, sex seems to improve my condition for a few days. The fact that I’m on HRT (hormone replacement therapy) also helps because of the oestrogen content; hormones have always played a big part in my condition. I avoid antibiotics at all costs, but if I have to take them, I would also take vitamin B6 and acidophilus. I will never use pessaries again, and if I do get thrush, I’ll take Diflucan (fluconazole) or a similar oral antifungal.

I feel I’ve been to hell and back with this condition, but consider myself lucky, because I have a husband who has supported me throughout, and two grown up children. I do have spells when my condition is calm, but flareups can happen for no apparent reason, though I do find that vulval pain, like any other condition, is exacerbated by stress. I now run the Welsh Marches Vulval Pain Support Group, http://uk.groups.yahoo.com/group/wm_vpsg There is life after a diagnosis of vulvodynia. If I can turn my life around, anybody can.

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5  Mary

My story began at about the age of 19 when I experienced symptoms of itching and soreness in the vulval area. The obvious diagnosis for this was thrush and I was prescribed Canesten cream. As the years went on the attacks of itching and soreness increased. I learnt that I could not wear certain types of clothing (tight-fitting, Lycra-based, nylon-based etc), and I began to wash with water and non-perfumed soaps, to be careful with washing powder, and to ensure clean water washes after being in chlorine from swimming. Throughout my twenties and thirties I accepted living with what I thought was thrush and planning my life around it.

In 2004, aged 36, I gave birth to my lovely daughter. After this, however, I experienced lower back pain which I reported to medical professionals. I had a big baby (10 lbs) and quite a long labour, but with no major issues. I have also for most of my adult life worked in the caring industry which includes moving and handling others on a daily basis. In 2008 I experienced three months of extreme back pain, meaning stabbing pain on driving, moving my legs to the side i.e. getting out of the car, and walking.

I also began to have increased bouts of thrush-type symptoms accompanied by severe pelvic bone pain. This felt worse than anything experienced before and was adversely affecting my life and not allowing me to sleep. I was at my wits’ end as the pain did not subside, and I took myself to my local walk-in GUM (genitourinary medicine) clinic. They again tested for thrush and all other conditions and everything came back clear. The GUM doctor did mention vulvodynia at this point as a possibility and I was referred to Gynaecology.

I tried taking amitriptyline, but felt disoriented, dizzy and disconnected, so I had to stop taking it as it didn’t fit with my busy lifestyle as a single mother. I also visited my local herbalist who prescribed herbs to help balance my body and the severe bone pain I was experiencing. I eventually saw a consultant gynaecologist who confirmed the diagnosis of vulvodynia and I was given the name of Brenda Jones who had lived with the condition for years and had set up a local support group. I picked up the phone, spoke to Brenda and for the first time spoke to someone who truly understood - I shall always be eternally grateful for that at such a dark time in my life.

I was lucky enough to attend a local support group meeting with Dr David Nunns as a speaker. He educated us about the vaginal, vulval and pelvic areas and gave us some treatment suggestions. I found a women’s physiotherapist at the local hospital and we explored using biofeedback to see if my muscles were in fact causing any of my symptoms. We discovered the right-hand side of my vagina was hypertensive and the muscle was contracted and causing me pain. I could not relax these muscles and thus the nerve pain continued. With the physiotherapist’s help I learnt the importance of pelvic floor exercises and deep relaxation. I now use these exercises every day and this is what I believe stabilises my condition.

I have now have tactics to manage my pain and the scale of this pain is lower. More than this, I live a full and active life with all the things that are important to me encompassed within it. Women with vulvodynia need to live in the belief that life does carry on and all things can again become achievable.

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6  'Sophie'

I have had vulvodynia for 20 years. I think that what brought it on was a topical treatment for thrush which my doctor prescribed because I said I had symptoms of vulval soreness and burning. I don’t think I ever actually had thrush, but was prescribed topical antifungals anyway. I still suffer from these symptoms and have tried many treatments, including acupuncture, and I bought a TENS machine to try and ease the pain. I am currently taking amitriptyline at 10 mg and pregabalin at 20 mg. I also had a biopsy taken about 15 years ago, which came back as non-specific inflammation. I just wish they could find a cure, as vulvodynia does get me down, because I find there are a lot of things I would like to do, but can't because of this condition.

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7  Margaret

Vulvodynia is an embarrassing illness; I haven’t ever told my two daughters! However, my niece also has it, so maybe there is something hereditary going on. Vulvodynia has far-reaching consequences: I am 66 now and have had it since my twenties. After 29 years of marriage my husband decided he could no longer tolerate seeing the pain I was in after intercourse (the pain was usually felt more after the actual touch sensation than during intercourse and invariably I also got cystitis.) He looked elsewhere and we are now divorced.

So where did my vulvodynia come from? I have several theories. The first is damage to the back. I’ve twice damaged my back: first my coccyx and then the area of L5S1 in my spine. There is apparently a nerve connection between the back and the vulva. Secondly, hormones - lack of oestrogen. I never in my life had a normal period. Either I would have no period at all or I would bleed continuously for six months at a time. Thirdly, muscles which are held constantly under tension. To this day I am brilliant at the exercises the midwife gave me after childbirth and continue to do them. However biofeedback shows that I do not completely release that tension in the vagina after clenching (which is the important bit of the exercise for women with vulvodynia). I wish someone had told me how to let go. I know I also clench my buttock muscles when I am under stress. But maybe it was childbirth. My elder daughter was not only a breech baby, but a 'footling' - she got her foot stuck. Nowadays there would be no question about having a caesarean section, but then she was delivered vaginally and it took a great deal of intervention to do it.

For many years all I knew was that I had pain in my vulva - soreness and burning, sometimes stabbing - all the time. No doctor was able to tell me what the matter was, because there was nothing to see, and therefore it didn’t exist, and so it was all in my mind!

One day I saw an article in a women’s magazine that described my symptoms exactly - and gave it a name, 'vulvodynia'. At last! Their theory was that vulvodynia comes from having too high a level of oxalates in the body. Exclude tea, coffee, chocolate, berries, beans, spinach and rhubarb from your diet, and the symptoms will go. Strangely enough if I do exclude these things, and especially tea, I do get some relief. Also you should take calcium citrate to flush out any other oxalate which is left. It isn’t the whole story. Nevertheless it works for some. I’ve also been on a diet to exclude nickel!

After various referrals to gynaecologists, dermatologists and even a hypnotherapist, plus numerous medical tests that didn’t amount to anything, I eventually found a consultant who knew about vulvodynia. She prescribed amitriptyline. At the time I worked for the National Trust, with daily handling of precious objects. One of the side-effects of amitriptyline is a lack of coordination and clumsiness. I had to choose between the job I adored and the pills.

In between I’ve tried other remedies, including taking part as a patient in a training day for UK doctors on vulvodynia which included the American specialist in biofeedback, Howard Glazer. One London hospital gave me gabapentin and an MRI scan to see if I had a trapped pudendal nerve. I hadn’t. Finally I arrived at the London Neuropathic Hospital at a clinic for pain management. I now take 1800 mg of gabapentin and 60 mg of nortriptyline and get lots of exercise. It has more or less worked for me, but the side-effects mean I am not pleasant to be around - I get indigestion and flatulence at both ends from the nortriptyline!

In the meantime, I am still trying to convince my sceptical GP to believe me.

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8  Beth

My pain started after the birth of my first child in 2003. I had an episiotomy and stitches and I was still very sore at my six week check. My GP said I had thrush but he didn’t swab for it and the Canesten pessaries he prescribed made things worse and the pain turned to a burning and irritated sensation. Another GP said I had an ulcerated area and gave me Betadine douches, which were agony! The same GP told my husband to give me ‘a bottle of wine and a good seeing to’ - so helpful!
 
I fought for a referral to a gynaecologist, but that was no help either. One said that there was nothing wrong and the other performed laser treatment on my cervix, saying that my discharge was acidic. I was given steroid creams and oestrogen pessaries and everything just made me worse or no better. I was completely desperate and struggling to cope with my daughter, sex was agony and work was difficult. I even went to A&E one day as the pain was so bad, they just told me to go to the GUM clinic where I had to queue for hours just to have negative swabs taken (for thrush and sexually transmitted infections).
 
My husband found the Vulval Pain Society online and it was such a relief to feel like I wasn’t going mad. I met Dr Nunns at a vulval pain day in Newcastle after 10 months of pain and realised I had unprovoked vulvodynia. Dr Nunns later prescribed amitriptyline and I increased the dose very gradually to 100 mg. Even though it made me very tired, caused dry mouth and constipation, it really helped the pain so much and I was so pleased and able to cope again, though I still couldn’t wear trousers or sit for long.
 
I wanted another child so much that I overcame my terror of being pregnant again, came off the amitriptyline and luckily got pregnant after six months of trying. I was very uncomfortable and scared but a pain specialist told me that a natural birth might help. My son was born in 2007 and I tore quite badly to my horror and had lots of stitches. I tried not to panic and they healed OK and when he slept through the night I couldn’t wait to go back on amitriptyline, but it didn’t help at all and I was devastated. I tried gabapentin and pregabalin but they just made me feel rotten and didn’t help the pain.
 
I was still desperately searching for answers and was told about Rhonda Kotarinos, an American physiotherapist with a pelvic pain clinic in Chicago. After a friend went to see her in Chicago I decided to go out there myself for a week on my own to stay near Rhonda’s clinic and have two-hour sessions with her for five days. Rhonda felt that all my problems stemmed from the tight, restricted tissue around my internal episiotomy scars, which had led to irritation of the posterior femoral cutaneous nerve (not the pudendal nerve).
 
She manipulated all the tight, congested tissue to get the blood flow back, she stretched and massaged the scars and the tissue on my vulval area, buttocks, back, abdomen and legs and she worked on lengthening my short pelvic floor muscles. It was very painful as the tissue was so poor. She also recommended that I try dry needling of the dense scar tissue as this has proved to help release the tissue. I also had to walk a great deal and take nifedipine to improve my blood supply (I have always had cold hands and feet). I had to ice sore areas and do my own massage.

I also read a book called Explain Pain by David Butler and tried very hard to distract myself from the pain and to get rid of it as soon as it started i.e. walk, ice etc.
 
I saw an excellent chiropractor in London called Michael Durtnall; he did the dry needling into my scars. This was very painful but I’m sure it’s been a huge part of my recovery. He also x-rayed my coccyx and it was in a very strange position which was also putting stress on my muscles so he worked at moving it back to normal.
 
Slowly I have got better! As Rhonda explains, flare ups come but you get on top of them quickly and gradually they reduce and are easier to get rid of. I would say I am 95% better two years after going to Chicago. I can wear trousers again and sit for long periods. Sex is no longer painful. After being so desperate for so long I feel like a miracle has happened to me.

I wanted to share my story as I remember too well how hard it was to live with and to have to pretend that things were OK and to feel embarrassed telling people. I needed to hear that it was possible to recover but I didn’t hear many positive stories. Good luck and don’t give up hope.

 

As told to Sally Turner of the VPS, 2012 - 2013. Many thanks to the courageous women who contributed their personal experiences for publishing on this page.

 

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