My sex drive was the first thing to go. It crept out of my life, very slowly,
until one day I found it was gone.
Sex wasn’t fun or pleasurable any more: it was hideously painful. My vagina
felt dry, uncomfortable and bruised, the flesh inside raw. Then the itching
began. My GP said not to worry, it was probably thrush, and gave me an
antifungal cream, which I used religiously for more than a month. The itchy
discomfort soon segued into a throbbing pain in the deep hollow of my
vagina, and stayed. On bad days it would feel as though my vaginal skin had
been ripped away and acid poured in its place.
It got to the point that I could no longer sit at my desk, and would do little
more than wander around the office aimlessly. I lost my concentration, my
appetite, and – rather too quickly – my sanity. I stopped cycling, swimming,
wearing jeans, trousers, stockings, underwear, anything that might aggravate
the pain, which seemed to have a mind of its own. Sex was the worst, it felt
less like making love than feeling like I was being violated. Doctor after
doctor gave me a differing diagnosis – chlamydia, herpes – and their
corresponding medicines. But I was getting worse, and one day I found myself
in the A&E, my vagina pulsating and my relationship on the brink. When
the hospital could do nothing for me, I realised I needed some serious
answers.
The pain started a year ago. It then took seven months and five doctors to
diagnose vestibulodynia, pain in the “vestibule”, the area inside the inner
labia, where the openings to the vagina and urethra are found. As with most
medical diagnoses, there was good news (they were sure what I had) and there
was bad news (it has no cure). But the bad news didn’t stop there: not only
is vestibulodynia incurable, but doctors are still confused as to why it
exists or how best to treat it, or control the pain. In fact, vestibulodynia
is often diagnosed only when everything else has been ruled out. It is not
contagious or cancerous, nor is it a virus, infection or skin condition. And
although it can cause agonising pain, vestibulodynia is all but invisible to
the naked eye, so that a physical examination of the area will often have
normal findings. More confusingly, infections (such as thrush or herpes) and
vulval skin conditions (like lichen sclerosis) can often cause the same
symptoms. As a result, perplexed doctors too often misdiagnose
vestibulodynia, saying that it is thrush, before sending women, like me, on
their way.
“Vestibulodynia is a poorly recognised condition in the medical profession,”
explains Dr David Nunns, the founder of England’s Vulval Pain Society and a
consultant gynaecologist at Nottingham City Hospital.
“Chronic pain in the vulva is just not considered hugely important by doctors.
We’re not trained very well in managing women’s health – GPs don’t get much
training in gynaecology, and gynaecologists aren’t usually good at talking
about sex or sexual problems. It leads to women not getting the correct
diagnosis and their pain not being taken seriously.”
This is problematic: women see on average five doctors before the condition is
correctly diagnosed. A recent study in the American Journal of
Obstetrics and Gynaecology found that women with vestibulodynia are six
times more likely to have chronic urinary tract infections, four times
likelier to have repeated thrush and three times more likely to report
depression.
Worse yet, one out of every six women suffers from chronic vulval pain,
according to the National Vulvodynia Association. This means that five
million women in the UK will have it at some time in their life. So why are
doctors still so unaware of vestibulodynia?
“It’s difficult to diagnose because it’s a hidden pain,” Dr Nunns explains.
“It’s in the nerves, so there’s nothing to see, there’s no measuring stick.
It’s purely a nerve-ending problem, a reprogramming so that what should be a
pleasurable sensation in the vulva is read as painful. And why that happens,
we don’t know.” Research suggests that the highly sensitised nerves in the
genital region can become overstressed from a particular cause, called a
“trigger event”. And although I think I might know mine (a combination of
stress, thrush and antifungal cream, which can leave behind red, perturbed
skin and a severe tenderness to touch), I am in the minority: only about a
third of women with vestibulodynia can identify a trigger event. More often,
the pain is unprovoked and will seem to have just “appeared” on its own.
Despite the ease with which it might appear, vestibulodynia is incredibly
difficult to get rid of. Pain perception and management are both very
individual – what might diminish my pain wouldn’t necessarily alleviate
yours – so there’s no clear-cut cure for what is, essentially, a fault in
the nervous system.
Without a doubt, it’s the notion that sex might never again be passionate and
thrilling but a continual source of pain that terrifies me. My partner Tom
and I had been together only six months when my symptoms first appeared last
May. Our “honeymoon” period was transformed into a stressful drama. Tom, the
man I want to marry, was forced to stay strong for both of us. None of the
arguments and not even the pain stopped me from wanting to have sex,
bizarrely, and it was up to me to initiate as he was too frightened of
hurting me.
The intercourse – if we even got to that stage – could feel as though my skin
were being forced open and torn away, but out of desperation to feel
“normal” and to please Tom, I would grin and bear it. The stress of it all
increased my pain and my frustration quickly fomented into physical
violence, peppering our time together with weekly temper tantrums. Our
communication broke down to the point that we could barely function as a
couple.
It was the patience and support from Tom, particularly, and my friends and
family that reminded me to have hope, and consultant Dr Nunns’
recommendation to “hit vestibulodynia from all sides” has led me to start
seeing a chiropractor (to realign my spine and bring my nerves back on
track) and an acupuncturist (to “clear” the nerve pathways). I also take a
fairly common medical cocktail to regulate the pain: low doses of an
antidepressant to relax the nerves, a topical numbing agent that I apply
once daily to turn them “off”, and calcium citrate vitamins, meant to
regulate the salts in my body. I’ve joined a society – the London Vulval
Pain Support Group – which holds meetings, provides information and allows
women like me to know we’re not alone. And next week, I start physiotherapy
to teach me how to relax my pelvic-floor muscles, which – I’m hoping – will
make sex pleasurable again. Most importantly, though, Tom and I are now
seeing a psychosexual counsellor, which allows us to talk through things
without arguing about them.
I’m not cured, nor have I cured my relationship with Tom, but if we get
through this, I know we’ll get through anything. And although my pain hasn’t
entirely subsided, I’m far better able to manage it now and am confident
that I’ll soon be able to remember it as a thing of the past.
Looking back at this year already, though, I wish I could have spent less time
being angry and just remembered that pain is little more than your body
telling you something’s wrong. As its keeper, you need to discover what that
is, no matter how long it might take. My luck stems from my friends, family
and Tom, to whom I am incredibly grateful for their enduring wisdom and owe
a huge thank you. So many women with my condition suffer alone, alienated
from their own friends, family, partners and doctors by having something
that nearly no one can fathom, let alone treat.
Dealing with vulval pain
Vestibulodynial is a type of vulval pain syndrome. These syndromes are often
identified only when other causes of pain in the vaginal region, such as
thrush, bacterial vaginosis and eczema have been ruled out.
Soaps, bubble baths and antiseptics can make the condition worse.
Wearing loose-fitting underwear, and washing underclothes in water only, can
sometimes help.
For more information, contact the Vulval Pain Society: vulvalpainsociety.org;
07837 533992
Portsmouth, UK, June 2009. I have had this condition for 6 years now and find it really hard to cope with. I went to the gm clinic in Portsmouth for years but all they seemed to test me for was chlymdia and so it was useless. I am on amitryptiline. Are there any vulval specialists in this area?
Katherine, Portsmouth, UK
I have this excrutiating painful condition, tests incl.scans,swabs,antibiotics,thrush creams,,vaginal creams,colonoscopy,hysteroscopy,cystoscopy,specialists,and GPs.I am on Amitripyline,Tramadol,which helps very little.Does any one know of a Doctor who understands this condition in the Kent,UK.area
Jes, Kent, uk
I am 19 and have been suffering from Vestibulodynia for almost a year and a half. It's been a very tough time and for so long the pain was constantly there. It felt like the muscles were all spasming in my vestibule and I couldn't sit or wear trousers. Mine came from an undiagnosed case of thrush
Lisa Bichard, Littlehampton, UK
9 doctors over 6 months; had I not found Dr. Nunns' work on my computer I would definately have had a nervous breakdown. No cure yet but the amiltriptyline (10 mg) helps as do 3 or 4 goes on bidet a day, water here fairly alkaline. Have dysaesthetic vulvodynia. My love to you all.
Louie Castle, Jimena, Spain
See also National Vulvodynia Association in the USA www.nva.org
Mic, Washington,
For 3 years I have been searching for help with my problem. After too many doctors and non committal surgeons, this article has actually reduced me to tears as finally I feel that there are people out there who suffer as I do. Thank you for speaking out about such a personal issue.
Beth, London,
Hi to the times on line! this email is from susan, twelve month's ago, I responded to Kate,s wonderful story" not so gentle touch" It would be wonderful for all women around the world , if Kate would let us know how she is going, all the emails say great story out in the open. thanks
susan Callow, Melbourne, Australia
I have had vulvodynia for about 20 months and spent the first 9 going from doctor to doctor. Shortly after diagnosis, I tried eliminating gluten from my diet, and within a few days my pain was halved. It's still around in a lesser form, but I'm thankful for any gains!
Esther, Cleveland, OH/USA
I was diagnosed wtih vestibulitus about 6 mths ago after also seeing many doctors and being prescribed tons of meds. It took 2-3 years (I don't even remember how long I was truely suffering from this), but at least I now know I'm not going crazy...there was something wrong with me. Sounds like others have had this same feeling. It's good to know there are others who have the same feelings as me. Currently, I'm only using some steroid cream that numbs the area. It seems to be working so far but I am always trying to find the lastest news and findings on this. I don't want to just treat the symptoms, I would like it to be completely gone one of these days. The chiropractic idea is good...perhaps I'll try that also. Thanks for the info!
Amanda, Dayton, OH
I had a laproscopic w/ vaginal hysterectomy late oct 07. I developed a uti after one week and have been in constant pain ever since. Just recently diagnosed with vulvar vestibulitis. Currently taking elavil, neurontin and musinex( has guaifenesin) that my latest gyn says help with this condition. I sit all day at my job, which in my opinion only make my situation worse. I am very inflammed and use hydrocortisone cream and lidocaine. I am going through menopause and use vagifem and vivelle dot patch. My hot flashes have eased up a lot. I can't sleep with my husband and sex is out of the question. I have problems with my arms and feet getting very numb and hard to sleep. I hope my condition is due to hormonal changes and with the meds, will clear up. I am looking into acupuncture and biofeedback. I want my life back. I am tired of crying and feeling like this will never go away. thanks for listening
sandra, lexington,
Thank you for publishing this article and for having the courage to talk so openly about your sexual relationship. I am amazed yet qually appalled that so many women and their partners have to suffer with this condition.
I have had vestibultis for approx 2 years now, although it took a long time for this to be diagnosed. Your comments and information about cures have helped me so much so thank you for all the suggestions and for sharing this.
If anyone can shed any more light on how the pelvic floor exercises actually help, I would be grateful!
Jenny, Yorkshire, UK
I have had this condition for over 12 years and today after seeing 6 gynos in 2 different countrys, having ovarian cancer, endometreosis and a baby (which i decided to have by c-section because of the pain) I have finally found out what is 'wrong' with me! This has really floored me, being no cure, but now I finally know what is wrong. I am glad I did not give up (for a while I thought it was all in my head). But I know it is going to be a long road. I will try everything I can and I hope my marriage can survive.
Char, Cambridge, UK
I've had this condition (with a blissful 6 month interlude of pain free time) for about 7 years. What shocks me, and what seems to be a common thread is that doctors are happy to prescribe medication (creams, anti-biotics) for either thrush or BV or other supposed STDs (such as claymydia) without actually completing their diagnosis by sending off swabs for testing. After 2 years I was finally referred to the vulval dermatologists at my local hospital. They were equally scant in their investigations and it took another 3 years before they did patch tests for allergies (finding out that the cream they had prescribed for the last 3 years I was actually allergic!) and referring me for a full screening at the GUM clinic (just in case!). It seems to me that a) doctors' should test for specific infections before attempting to treat them b) if those tests are negative then allergy testing should be done as routine and simultaneously c) a proper test for vulvodynia should be done.
Deborah Mason, London,
I have had vulvar pain since I began using tampons in my adolescent years. As i became sexually active, the pain intesified on contact. I thought I would grow out of it but as I visited my doctor at age 27 and realized that I was the ONLY one of my female social circle that had crazy painful intercourse, i knew my problem was unique and I needed to get help. I tried meds and creams and nothing helped the pain. I was sent to a vulvar specialist (they do exist!) and conducted a few tissue tests and a thorough exam. He concluded my condition of vestibularitis. He said due to my anatomy and pain location, he said surgery would be inevitable. The success rate is 90%- women have complete elimination of symptoms. I thought, why go through another day of pain when I would eliminate it altogether. I had a vestibularectomy 1 week ago. He removed a horse-shoe shaped area of tissue around the opening of my vagina (including the hymen). Recovery is rough, but i am glad iwht my decision.
Lindsay, Rochester, US
I'm 21 years old and suffered from vestibulodynia for 2 years. I suffered from what was thought to be a thrush infection and given the usual anti-fungal creams, but things just kept getting worse and i was very sore and swollen and the GPs kept sending me away with the same creams. I was in the 2nd year of Uni and it got so bad that i could not sit in my lectures, even walking was painful as the skin would rub against my clothes which felt like being rubbed with sandpaper. When i finally got the correct diagnosis it was no releif as all the medications i were given did'nt really help. I had to go to couple of different Gynaecologists because some were incompetent, did not take me or my pain seriously and wasted my time and money. I have now found an excellent gynaecologist and I'm going to be having botox injections and a vestibulectomy which I'm hoping will provide me relief. I am also grateful to my dear fiance who has been extremely supportive thru this, i love u babe x x
Fizz, Bradford, England
I have suffered for well over 10 years, I've lost count. I was originally told to wear loose clothing, no tights etc. I was given some cream but no diagnosis. I used the cream when I needed to as it was very effective. However over time I became aware that it was causing it's own problems, flaps of skin and tags. When I moved and registered with another GP I was sent to the hospital for a diagnosis, vulvodynia. This involved several visits and were not very informative until they gave me a diagnosis. I had tried different creams with them and although they all worked it didn't cure it. I needed more than this. When they diagnosised it they sent me back to my GP who just filed it and said I could carry on with the cream. I wasn't happy as I was convinced it caused the tags and spare skin. I moved again and registered with a new practice, who has listened and has tried accupuncture. I think mine is stress related and that is likely to be the only option. (reduce stress significately)
Hazel, London, UK
I have had vulvodynia for about 6 years, it took several years ot be diagnosed as it was mistaken as thrush and one doctor practically called me a liar to my face. Luckily I live near a hospital with an excellent clinic that has a doctor, psychotherapist, physiotherapist and dietician. Although I still have flare ups, I made huge leaps with the physio and can have intercourse. Although it is usually painful at entry, I have learnt that the pain will subside after a few minutes if I keep quite still and work my pelvic floor muscles. I have to recommend the Rampant Rabbit Twister from Ann Summers. It has a flexible shaft, small head and is shaped to you can turn it around ot find the most comfortable fit. I was amazed the first time the physiotherapist slipped it inside, I was sure it wouldn't go and had been using a much smaller vibrator for therapy.
Keri, Watford, UK
Tks. so much for the wonderful article on vulvodynia. I am almost 64 yrs old and have suffered w/this condition for approx. 5 yrs now. I had a vestibulectomy w/vaginal advancement approx. 2 years ago that was a total failure as far as I can tell. I still have extreme pain w/intercourse, but no pain at other times, thank heavens. The only thing my gynecologist offered was Lidocaine to be inserted before intercourse. I do take Paxil for migraines. I have learned a tremendous amount from reading the comments of other vulvodynia sufferers above. I can't wait to ask my gynecologist to let me try some of the remedies they have mentioned in their comments. My wonderful husband of 43 yrs. has been supportive all along, and believe me, ladies, your sex life does not end even when you are in your 60s, so keep those suggestions and tips coming. I would like to know if anyone knows of a vulvodynia specialist in the Mobile, Alabama area.
Thanks!
Peggy, Mobile, Alabama
Peggy Wright, Mobile, Alabama
Great to see that your words can reach people all over the world. The more information out there the better.
Closer to home those who attend the London group will know that there is a new group starting up north. Anyone wanting support in the Noth west and Yorkshire can contact the northern support group at cp.vpsg@googlemail.com
Helen, Leeds, UK
I suffer with Lupus, Sjogren' s Syndrome, Interstitial Cystitis with pelvic floor dysfunction, Endometriosis, and Vulvodynia. These are all autoimmune diseases and they interact with each other. One condition flares and causes the others to flare as well. I am 49 years old and it has taken years to find physicians who could diagnose, treat and understand the interconnection between all of these conditions. After 3 years of unrelenting and debilitating pain, I have found a urologist, gynecologist and rheumatologist who understand the significance of each disease and are treating me correctly. It has taken alot of trial and patience to find the correct combination of treatments. I take multiple daily oral medications, a topical vulvar cream, instill medications directly into my bladder twice weekly, and have had an Interstim device implanted into my sacral nerve. I continue with daily Physical Therapy exercises. I have begun to experience pain relief and the return of a quality of life.
Kathy, Swarthmore, Pennslyvania/USA
I have had vulvodynia for 11 years now, I take Neurontin 3x day and Famvir two times a day and clobetersol ointment, I still can not sit properly , I must lean to one side or the other, so every so often I must go to the chiropractor for alignment. If I am in extreme pain or flare ups, I do use Lidocaine, and go to bed. I am much better now than 11 years ago. I literally went through hell in the beginning as no Doctor could tell me what I had. And yes I have read books, gone on line for more information etc. I have found you must keep trying whatever works for you. hope this letter helps some one. Joyce
Joyce, Shapleigh, Maine
I have been diagnosed with vulvodynia for more than 2 years. I am 61 and have been married for 40 yrs. What has worked for me is a combination of yoga, meditation, Chinese herbs, acupuncture, no underware or pants, all clothing washed in Ivory and, most of all, the support of a remarkable husband. I tried all the Western protocols: antidepressants, creams, pain killers, etc. but all caused more problems than the healing of alternative care. I would say I am 90% healed.
I encourage all women to continue to search for the protocol that will help the healing process. This can be managed but takes perseverence to do so. Good luck and blessings to all of you and to your partners, health care providers and friends who stay by your side.
Louise Lorente, Portland, Oregon
I have had had Vulvodynia for 4 years and I have been fortunate enough to have the condition under control now for the last 2 years. I rarely get a flare-up unless I am under a lot of stress or eat chocolate, which is a big trigger for me. I take Calcium Citrate and other supplements along with doctor perscribed Estrogren cream (only a very small amount because I am in my early 30s).
I learned about this treatment from Carol Wilson. She is the author of the Vulvodynia Treatment Guide which is an excellent book for anyone with Vulvodynia. There is increasing clinical information on the benefits of Calcium Citrate and Estrogen Creme to prevent Vulvodynia pain and symptoms. You can get the guide at http://www.Vulvodynia-Treatment.com
I now volunteer part-time to help other women with this condition. Honestly, there is hope and you can get your life back to normal again.
Cheryl, Vancouver, Canada
I've had vulvodynia for 4 years. I've also had interstitial cystitis for 15 years. I had a bladder infection that was treated with three antibiotics, then I got a yeast infection, then antibiotic associated colitis. I was treated with Flagyl for the colitis, then I got another yeast infection. That's when the vulvodynia appeared. I could hardly walk I was so sore.I had to sit on a donut pillow. What helped me was pelvic floor therapy, vag estrogen and increasing the Norpramin ( triicyclic antidepressant) I take for my IC. Also, had 12 acupuncture treatments. I meditated and listened to relaxation tapes. I'm doing well, although I had another UTI in Feb., then got a yeast infection in March. I've been doing the pelvic floor exercises I was taught, and feel fairly normal. I also do yoga a couple times a week. Two books that helped me are, The Vulvodynia Survival Guide by Howard Glazer, Phd. and Headache in the Pelvis by David Wise, Ph.D.....and can't forget The V Book.
Sharon, Traverse City, MI
I have had vulvodynia for over five years. It has been a nightmare but today I am 90% better than I was when it started. Three things have helped me significantly. Vagifem (vaginal estrogen) vaginal tablet twice a week, Cymbalta 60mg once a day, and laying flat in bed mid day for at least an hour to take pressure off the area and help relax my muscles. I strongly suggest trying the cymbalta. It helps me a lot.
Lisa Edelman, Charlotte, N.C., USA
Lisa Edelman, Charlotte, USA/ Charlotte
This began with a GYN exam including a Pap smear clumsily and painfully done. This after Dr. told me I had vaginal dryness I do not know why he did not treat this condition and then take Pap smear. One hour after this I began to have Vulvar pain and this incident triggered off my Vulval pain. I could not go swimming, the water in the pool aggravated my symptoms. I only shower with water, no products or soap. I wear white cotton underwear, slightly baggy to not restrict vaginal area.... I did not want to go out and spent a lot of time at home wearing a loose cotton dress. I found great relief from vaginal inserts of lactobacillus which renewed the vaginal area Flora necessary for vaginal health, applied once per night, and a great relief. Suspended all creams which did more harm than good. Advised by GYN never to use pantiliners which she said caused tiny tears invisible except under magnifying glass. Very useful information. Lactobacillus did help enormously.
Jean Evans, San Antonio, Texas USA
Thanks for the article. I have dealt with this issue over 30 years and consulted innumerable specialists. I am finally better with a combination of approaches. My problem was persistent symptoms of yeast infection which you call thrush. The result was damaged vulvar tissue and constant incapitating pain and itching. Here is the combination that made me better.
No underwear or tight pants.
Yeast, wheat, dairy free diet as well as limiting sugar intake.
Because of the damage I needed two vestibulectomies because the first did not removed all the damaged tissue. The recovery was very long, but when two years had passed after the second surgery I became almost normal.
The biggest difference came from eliminating all dairy products from my diet (I was already off wheat). Had I found someone who could have told me this many years ago, I may never had needed the surgery.
Good luck, and try fiddling with your diet. It is simple enough and there are so many substitutes today.
Carol, Chicago, IL USA
Helen Smith of New Forest - have you ever had a biopsy for Lichen Sclerosus? Sounds like a classic case.
Anyway - have had vestibulodynia (the correct name, rather than the older, innacurate 'vulval vestibulodynia' which suggests some kind of skin irritation, when really there could be any number of causes) for 6 years, and I too have found 90% relief. I would only ever consider surgery as a last resort, however.
May I also congratulate the amount of men and women who stand by their partners regardless of this distressing and debilitating - and sometimes humiliating - pain. Mine is so gentle and sensitive when I get a flare-up it humbles me.
Help is out there! Keep persisting. Well done, Kate.
H D, Canterbury, Kent, UK
This is the best article I've read on vulvodynia. I am 26 and was diagnosed two years ago, after a never ending yeast infection, multiple doctors, and a breakdown into panic attacks and anxiety disorder while I was trying to deal with the pain and figure out what was wrong. Now I'm on Neurontin, have been through pelvic floor therapy, and am doing much better. I empathize with every woman who has written in and am comforted that others understand and word is spreading. If it helps, I want to recommend Susan Dunn (PT) in Louisville, KY, and Dr. Elizabeth Stewart, Dr. Alisa Pascal, and Raquel Perlis (PT) in Boston. Light and healing to you all.
Ann, Boston, MA
Hi there:
You printed my comments (Anne, Washington DC) this week which is a good thing. I seem to have had a typo. I'd like it to say National Vulvodynia Association (the word Association was left out). And even if you could possibly put in parentheses (www.nva.org), that would be awesome. That website saved my sanity.
Anne, Washington, DC
As a sufferer of this condition, I don't really know what I can add. It seems that there are as many causes as cures for vulvodynia.
One thing I can add is another resource; National Vulvodynia Association, which I believe is at www.nva.com. One thing this site offers is a resource for oxalate testing which will time your citrate dosage with your pain times, which is critically important. They also publish a cookbook with the oxalate content of foods and recipes.
I have never found complete relief, just management. The closest I have come to being pain free is through Elavil but I cannot tolerate as it makes me too sleepy.
Thanks for the touching article and my thoughts are with all who are suffering. Hopefully a cure will be found in the near future.
Judy, Saratoga, CA USA
I have been diagnosed with lichen sclerosis and I am looking for a support group in my area. If anyone has any information on this I would be greatful.
Kathleen Smith, Middletown,N.J., USA N.J.
Hi Again! I'm amazed at all the responses on the site. My friend said that there were a lot of people out there suffering in silence. perhaps this will encourage more people like her to make the big step and talk to their doctor about it.
As promised i E mailed my friend in italy and gave her a link to the article. she was very pleased to see it as she thinks she'd had it in the UK for 5 years before she moved to Italy. I asked her about the underwear and she said it was called Dermasilk. i've found it on Google. the website makes no mention of Vulval pain but it might be worth a try. I get persistent Thrush which itches rather than burns so I might try it. Anything is better than natural yoghurt!
Good luck to you all in overcoming this. at least with a senior doctor supporting the diagnosis of the illness it should get more sympathy.
Diane Pearson, Bedford, UK
I have been suffering from Vulvodynia for almost 2 years now.........I believe my "trigger point" was a really nasty yeast infection. The good news - - I found a wonderful practice in Philadelphia that deals with vulvar pain. If I could make one recommendation to those women living in the US - - go to the following site: www.nva.org. You can become a member and get a list of doctors that treat this condition in your state. It's amazing how much better you will feel if you speak with someone that understands the pain you are in. And I agree with all the women out there - - stress makes the situation worse. I can't wait for the day I can wake up and NOT think about whether my vulva will hurt!!! Good luck to all of you out there!
Suzanne, Holland Township, NJ
I have had this since 2000 and have tried EVERYTHING-if ANYONE knows of someone in Cincinnati who can treat this-please email me-I have exhausted all avenues and my option is now the surgery in which I'm not sure is the cure all-thank you
Jillian, Cincinnati, OH
I am not going to touch this one!
Garth Rex, Glendale Heights, USA
It's not all bad news - although I suffered from vulvar vestibulitis for 3 years and had to fight to see the consultant I wanted (after a really horrible experience with a gynae), treatment with dilators and topical anasthetic worked for me. I do have slight relapses but nothing that doesn't go away in a few days and I don't have to use treatment now.
Joy, Bedford,
Congratulations on printing the article and to you Kate for your courage to come forward. These subjects desperately need to be brought into the open and discussed. For your information I am the speaker at the next London Vulval Pain Society meeting on the 23rd June in Baker Street London. You mentioned them in the article and they have about 200 members in and around the London Area. I am a sex educator and talk to women up and down the country in your situation and try to find remedies to help them. Most of these have been discussed in the article and the forum postings but I work with clinicians to find novel resources. These I shall be discussing and bringing with me at this meeting and everyone is welcome. www.maryclegg.com
Mary Clegg, Andover, UK
I also have this diease Vstibulitis along with Interstital Cystitis, Pelvic Floor Muscles Spasm, Lichen Sclerosis, andn possible hernia's.
My health just keep going down adn down since I got this Vulva Diesase. I have been married to a man for over 31 years. I don't now why this has happened. i am sick al the time at. I have seen many Dr's. from Vanderbilt till now Alab. I have one that is over 5 hours away I am dealing with. I can not get all my medicine I need . I need it is called a Appell Cocktail that is very hard to get and insucance will not pay for this. I am on 7 different kinds of drugs along with PT.
Yesterday I hadto go to my family Dr. fro a sty in my eye. great!! The medicine he gave me he had to do two of them. he said it willl cause me a yeast infection I had one last week while at my Dr. in Alab. Ican't get over one till I have another one. GREAT!!!
I hurt all the time. and they think you can work and hurt like this. I don't understand. I am a IC Diet.Does not help
P HAULK, Dawson Spgs, KY.
What a wonderufl article. I have vulvadynia( burning) and vestibulitis ( pain at the opening). I went on a low oxalate diet about 10 years ago and the vulvadynia went away completely. when I cheat alot on the diet the burning sensation comes back. It also makes the Interstitual cyctitis act up and if I cheat for a long time I'll get that stabbing pain back. After 10 years I've learned not to cheat and life is so much better. there are several Low Oxalate cookbooks out that really help. They are produced by the vulvar pain foundation.
cindi, cary, North Carolina
I have suffered tremendously with vulvar vestibulitis for ten years. It didn't happen overnight, but gradually, so I didn't realize something was seriously wrong until it was unbearable. Ten years because the many, many doctors I went to didn't have a clue! I suffered nearly ten years before a doctor sent me to a specialist because he 'thought' I 'might' have this problem. Sure enough! After years and years of treating the countless "yeast infections" I was diagnosed with, I finally got treatment and relief. After a year of estrogen & steroid creams, zoloft (for the nerve thing), drying my vulva with a hairdryer and wearing NO PANTS and NO SEX, I opted for the vestibulectomy. Its been 6 months, and I'm not fully recovered, but I couldn't possibly be happier than I am now! No constant pain when I walk, sit, run, have sex, wear clothes, use the bathroom, breathe!...It's the best thing I've ever done. The doctors NEED to be EDUCATED to stop the needless suffering of women!
Bonnie, Chicago, IL
Great article! I applaud all efforts to put this condition in the public eye! Women suffering from this condition need to know that they aren't alone. I am 28 years old and was diagnosed with vulvadynia when I was 26. I also have endometriosis and interstitial cystitis which are probably the cause. I have been through physical therapy, creams, Neurotin, Lyrica, etc. The physical therapy is what helped the most. I can have sex, but I usually experience a terrible burning afterward. My husband has been extremly supportive, but this is hard on a marriage. Luckily, he knew what he was getting into when he married me! Before I was diagnosed, I was treated for more yeast infections that I can count and was told that I was in pain because I was too stressed. I finally changed doctors and found relief. Anyone that is dealing with this kind of pain has to take the initiative to find the answers and force your doctors to listen to you. Its not "just in your head"!
Angela, Louisville, KY
Thank you so much for publishing an article on vestibulitis! I'm only 19 and have suffered as long as I can remember. 3 doctors told me I had yeast infections even when there were no symptoms, and when treatment failed would tell me strange stuff like "Your vagina is just too small", "You can't have sex because you secretely hate your boyfriend", "The pain will disappear if you relax". I left in tears each time, and have had trouble finding guys to date; who wants a young woman who can't have sex?
I was diagnosed finally 3 months ago and am headed in for a vestibulectomy at the end of the month, which will hopefully be the cure and key to pleasure and eventual motherhood I've been hoping for.
Lauren, Anytown, CA
I am 23 years old and living in the US. I was diagnosed with vulvar vestibulitis, a sub-type of vulvodynia, in September 2006. I had been suffering from acute vulvar discomfort & painful insertion of anything for over a year before that. I have also never been able to insert tampons and intercourse has always been painful since forever, so we (I and my specialist) think I may have been born with it.
I saw 3 doctors (2 gyns + 1 dermatologist) + 1 specialist before finally being diagnosed. On his advice, I went off of hormonal birth control pills, and used some estrogen gel for a few months & was unsatisfied with my improvement. I chose to have a total vestibulectomy in February 2007. It's been 4 months, and I assure you, I'm feeling much better now. It will be a long while before I can be completely normal, but this is better than it was! I can't yet say what the long-term results will be.
Thank you for writing this article. Everyone needs to know about this, especially doctors.
Karen, Ocean Township, NJ
I really appreciate your articles. I have had vestibulitis for 8 years now. I have tried everything. I'm having a vestibulectomy next week. I hope this will take away the pain. I will be in touch.
Barbara, South Wayne, WI
Ladies (and gentlemen who care for you),
I have suffered off and on with this as long as I can remember- even as a child, I was told not to use bubble baths, as the chemicals would give me UTI's. Then came the yeast infection in my teenage years, (which were probably misdiagnosed), and at times, very painful intercourse. (I am 39 , married & have a 5 year old.) I have gone through a vestibulectomy, where they remove the six pain-inducing vestibular glands, but it is a long healing process. What I want to bring up is an often co-existing condition called "Interstitial Cystitis", which I also have. It is a disease of the bladder, and it may accompany the Vestibulitis. Basically, IC feels like a urinary tract infection all the time, with no fever and no infection. Not only is there pain at the opening of the vagina (I call it "the ring of fire"), but also upon deep penetration. If you have anything like this, please see a urologist who specializes in Female Urology. Good Luck all
Teresa, IL, USA
I have been experiencing this pain now for the past year, it would come and go but now it is constant and raw. My Dr. prescribed the steriod creams,estrogen,antifungal, tested me for every STD but no help. At this point I feel the creams are making the problem worse because it's like I have a diaper rash. I will be seeing my 3 rd Dr. this coming Monday she was a reccomendation from this web site. This problem has been so debilitating I have no desire for sex, my relationship with my husband is slipping away, we are no longer physically close. I can't plan a vacation or any type of activity because it is constantly there, if there is trigger to this then it is directly related to my husbands motorcycle accident which resulted in an amputation of his leg. I'm just so depressed and very tired all the time I need my life back. If any one has any other suggestions please keep me posted and I will write back if this 3rd Dr. has any new news.
denise north, manchester, ct.
This is such a great helpful article to all. Thank you Kate. I myself came down suddenly with dysaesthetic vulvodynia in 2001 at the age of 44. I was bedridden, I couldn't walk. I also had to visit about 7 doctors. On the eve of visiting the 7th doctor (about 6 weeks into this awful experience) who was a vulvovaginal specialist, I finally found the National Vulvodynia website and it was there I figured out what I had on my own. It was my pain specialist doctor, Dr. Justin Wasserman in Bethesda, Maryland who gradually worked me up to significant levels of Neurontin and also Effexor. I believe it is my pudendal nerve that is out of whack. Still on this medicine, I am basically pain-free. In my case, it was the medicine that helped me where the physical therapy, acupuncturist, low oxylate diet, creams, etc. didn't help. But every case is indeed different.
Anne, Washington, DC
Thank you for sharing your story, and thanks to The Times for publishing it! Not enough people know about this horrible condition. I am 24 years old and have the same condition. Mine is primary though, meaning I have always had it, so I have been unable to ever have sex. However I have gotten amazingly better over the last year, due to seeing a specialist who prescribed me estrogen creams, muscle relaxants, an antihistamine, pelvic floor physical therapy, and capscacin cream. I have also been going to a psychologist specializing in women's health.
Ayla, Philadelphia, USA/PA
I also was diagnosed with Vulvodynia, about 12 years ago, and I went to a number of doctors, and hospitals, and also felt helpless and depressed, I was married with three kids, when mine started. I did find relief with Physical therapy, bio-feedback, chiropractic help, and pelvic floor exercises. I also realized, when I am stressed out, I tense up my muscles, in a certain way, that brings back some of the pain, I have found relief for almost 12 years. Please keep searching, and you will find help.
Jean, Berwyn, Berwyn, IL
This is really interesting as my husband has recently been suffering from what sounds like the male equivalent, involving chronic testicular and prostate pain. Again, the medical profession were no help: from an "expert" urologist in private practice to regular GPs, no-one had an answer. My husband was told he was imagining it as tests for infections were clear. After months of unbearable pain, he's now seeing a chiropracter to re-align his spine and practising yoga to strengthen his pelvic muscles and is feeling almost 100% better. For anyone requiring information on the male version, www.pelvicpainhelp.com, could be helpful. This Stanford clinic is developing a programme of treatment.
What disappoints me is the vast salary paid to medics when so few are up-to-date with current medical research in their field and chronic pain ailments, in particular. With any other profession you could ask for your money back or sue when faced with such poor standards like a failure to diagnose.
MB, Edinburgh,
I have a friend in Italy who was diagnosed with vulvodynia about 2 years ago after many years of suffering the same torments as above. She eventually found a very helpful gynaecologist who suggested that a change of underwear might be appropriate. having been through all the other remedies under the sun she thought it was worth a chance so she replaced her cotton with a special silk fabric with something built into the fabric to prevent secondary infections. it seems to be doing the trick as her E mails now talk more about her family and less about her itch!
Has any body else heard of this product? I can't remember the name but i'll get in touch with her and post it on the site later.
Diane Pearson, Bedford, UK
Great article. I read your story and ould very much relate. I am young (32) and healthy and 6 months into my current relationship developed vulvodynia. I went through a horrible cycle of urinary tract infections (18 to be exact) and along the way developed vulvodynia. Went from dr to dr and found it so hard to stay positive through the terrible pain. Traditional medicine wasnt doing much for me so I went with an alternative route. For 8 months I saw a doctor of oriental medicine 2 x a week for acupunture and treatments called NAET. This was my saving grace!! I am currently doing very well :) I also found pelvic floor physical therapy very helpful. Best of luck to you and to all of the woman that are dealing with this.
Heather, Thousand Oaks, CA
I am thrilled to read this article. I had this condition for five years - the first five years of my marriage. (I've now been married nearly six years.) I had a baby through this situation and had the hope that my body would "reprogram" itself after giving birth. But, alas, after waiting the prescribed period to have sex, the pain was still there. Then, out of the blue, a few months later, the pain is gone. It's absolutely a miracle. Having sex that first time was really difficult not because it was painful but because it was unbelievable and I just wanted to stop and contemplate, celebrate and talk about it with my husband! Every time I have sex is a miracle. I'm still not my old self because this thing really traumatizes you. I just want to say that my husband, from day one, was extremely supportive, kind and thoughtful. He is a well of goodness. I aso wanted to post this because I want to say that there is hope. This terrible thing left just as mysteriously as it came. Good luck.
Jessica, Washington, DC
Hello Kate. You are doing well to have found a diagnosis so early and are finding new ways to cope. I have had pain & intense vulvar itching for most of my adult life. Suprisingly the reprieves I have had were during my three pregnancies. I was told by countless doctors that I had thrush infections & that I was "just nervous". Everything worsened after menopause and I was finally referred to a gynaecologist familiar with vulvodynia. I was diagnosed with lichen sclerosis.
After treatment with estrace cream and hydocortisone as well as antidepressants I have become almost symptom free. I also only wear cotton underwear that I wash with pure soap such as Ivory. There is a list of suggestions for easing symptoms on the National Vulvodynia Assoc. website. I have found using plain yoghurt vaginally helpful as well.
While the condition is not curable, it has been at least controllable.
Take good care of yourself.
tish leupen, Mississauga, ontario, canada
I've had Vulvar Vestibulitis and VIN (pre-cancerous cells in the vulva) for 15 years. It took three years and many doctors before it was diagnosed. I've tried many treatments and medications to help relieve pain. The most recent, Lyrica, is the best I've had. It is a prescription medicine for nerve damage.
I've also recently learned that laughter is a very effective pain reliever and has been shown to develop unique cells that attack diseased cells. So I have tried to watch or be involved in laughter as much as possible. Stress and talking about it makes the pain worse for me.
Vicky Garrett, Des Moines, USA/IA
I had this as well for 18 months....it ended up being lyme disease. The lyme bacteria infects the nerves....its hell.
I am comletely well now....good luck to you all, great article.
SARAH, Sacramento, California
Thank you, Kate, for sharing your story. It is important to create awareness about this issue. I have suffered from vulvodynia for about 10 years now. I first became aware of the pain at age 17, and now I'm 27. I've been in a stable relationship for about 3 years now. Biofeedback/physical therapy began to provide significant relief about 4 years ago, but penetrative sex is still painful much of the time. I would just like to remind readers that penetration is not the be-all and end-all of sex. Women with vestibulitis, who generally have pain only upon vaginal penetration, can still experience pleasure, intimacy, and orgasms through oral or manual stimulation. If your partner would not prefer to give you pleasure over having penetration which you find painful, then there is something wrong with him (or her)--not with you. Best of luck to all of you.
Jen, Los Angeles, CA, USA
thank you and Tom for being so brave and talking about a subject everyone else seems to hide from. Talking about you lack of sex life is increadibly hard and I know you would have given loads of couples great comfort that they are not the only ones who are dealing with this on a day to day basis. I just wish women were taken more seriously and that more is done to help us all deal with this horrible life changing pain.
Lisa, Essex,
Hello Kate, I have enjoyed the article and the comments of the ladies who are like me who have been suffering with vulvodynia. I have been living with vulvodynia for 9 years now. I was diagnosed with vulvodynia at age 19. I am now 28. I was diagnosed only after visiting 5 doctors over 2 years. I feel as though I am not a normal functioning woman. I have tryed many different treatments with only small help. I have tryed Calicum Citrate, dietary changes, Lyrica, biofeed back, massage, acupuncture, andI have had a perinoplasy ( A surgery that takes away damaged tissue of the perinium and replaces it with vaginal tissue that dosen't tear as easily). I have found the antidepressant I am on is the one thing that offers some relief ( it is generic for elivil). I am able to have sex but afterwards I experience a terrible burning, stabbing, and shooting that makes it very painiful. I am lucky My fiance is very understanding. Good luck ladies!
Amanda, Commerce Ciy, Co
Thank you for talking about this issue and helping to educate the public. I have had dysaesthetic vulvodynia for about 10 years. I was lucky enough to be diagnosed early on but the Dr. who diagnosed me didn't take my insurance and I couldn't continue to see her. I finally found a NP a few years ago who knows all about vulvodynia and is willing to try to help me any way she can. I am now taking Elavil, trying a low oxalate diet, and using Lidocaine topically and I'm about 70% pain free. Good luck to you!
Juli, Falls Church, VA
I had suffered the same fate after vaginal surgery for rectocele. I have finally found relief in Botox Injections in the vulvar tissue. (This is considered experimental treatment) It has been incredible. I have been COMPLETELY pain free for 4 months. I never thought it was possible to have this level of relief. I was fortunate to have an incredibly caring physician at the Cleveland Clinic in Cleveland Ohio USA. Good luck
Deb, Ohio, USA
My problem isn't on the inside, but on the outside. About ten years ago I thought I had a chronic yeast infection. Over the next two years of constant creams and hormone treatments my external genitalia started to change. The tissue became like paper, tearing all the time. It also started to tighten making the clitoris disappear. I've gone months with open tears that won't heal. I'm mortified, angry and frustrated that I will never have a "normal" body and this is only going to continue to get worse as I age.
Helen Smith, Forest Hills, New York, USA
Hi Kate & Tom,
I agree with excitement, what a wonderful article! I'm 46, live in the USA and have been diagnosed with VVS (Vulvar vestibulitis). Post-menopausal since age 28. I had it for about 12 years before being correctly diagnosed after finding it described on the internet. I took the article to my local doctor and she agreed. After years of drugs that never worked I went to Washington, DC and seen Dr. Andrew Goldstein. He performed a Vulvar Vestibulectomy with Vaginal Advancement. Basically he cut out the damaged skin and pulled the vaginal skin forward to take it's place. I've had amazing results with that succesful surgery, plus my local doctor added Cymbalta to help with the remaining nerve damage that still exists. (Their are nerves near the urethra that couldn't be removed.) I'm now able to have sex with minimal pain. I think wearing tight jeans as a teenager damaged the nerves originally. Thank you for being brave enough to go public with this. Sincerely JT.
Name witheld on request, bville, USA/ oklahoma
I am 31 and first developed chronical vulval pain 3 years ago. I will never know what exactly triggered it, but reading this article today brought back so many painful memories it nearly reduced me to tears. I remember the helpless, all-consuming physical and mental pain and the effect that had on my personality and interaction with my friends (many of whom I felt too embarassed to tell.) I was consumed with wondering "why me?" and believed my life was ruined. I am sure that many sufferers reading this will relate to these feelings. The good news is that, 3 years on, I am almost 100% better through a combination of lowdose antidepressants, physio, exercise (if you can manage it), acupuncture and really taking time to relax and allow the nerves to repair, which I believe they will. Good luck to everyone affected by this, please do believe that you will get better and you will have your lives back again.
Helen, London, UK
I have been struggling with the same thing for the past year and I literally feel your pain! I want you to know there is light at the end of the tunnel! I am almost 100% better through physical therapy, topical estrace cream, allergy treatment, neurontin, fungal suppression, acupuncture, and relaxation training. Women do get better from this! Have lots of faith and hope and keep searching for answers!
Lindsey, Sacramento, CA/USA
When I received the link to your article, it was like reading my own history! I can also identify with the good news/ bad news scenario. I have been sitting on a doughnut-shaped pillow for over 2 years. Most people assume it is for back problems. I do tell my students, and some other adults, that it is for back problems because there is no way that I can share the intimate details of my condition. It is very lonely at times, as there are so few people who can truly understand our condition. It helps to hear other's stories
You do have many kindred souls around the world. Thanks for sharing your story.
Pat, Mobile, USA
Thank you for including this article, it made me feel stronger regarding my own vulva pain and not to give up hope in finding away around it. To keep on searching for the right doctor is a hard battle, though not impossible. I have had this pain for 5 years and I am in my menopause period. I read your article with great interest because here in Sweden, scandinavia, it is not very well known so all the knowledge on Vulva pain has to be found in the US and UK . And therefore reading articles like yours makes me feel that I am not alone.
Bettrina Heitmann, Ângelholm, Sweden
hello Kate, what a wonderful article, my name is susan and am 53 next week,and i live in Australia, i have had my vulvodynia for twelve months and it was triggered by a nervous breakdown, which i believe weakened the immune system in my body, like you it was about of thrush and then the fungal creams that did so much damage, i can totally relate to every word that you wrote, i am trying a different approach, i am doing homeopathic medicine heal the body , heal the mind, and hopefully heal the vulvodynia,, and i am feeling a little better, congratulations Kate courageous article , lets get this horrendous disease out into the open .I actually diagnosed myself from an article in a magazine , it was under the title :when an itch isnt an itch: i have since had my diagnosis confirmed by a vulva specalist, mine is dysaesthetic vulvodynia, i can manage the sex, but it is the next day and the nex...................., good luck in the future Kate !
susan , Melbourne, Australia
Thank you so much for including the article "Not so gentle touch" on vaginal pain. I have been battling it for about 4 1/2 years now, and it has been the greatest challenge of my life!! It's important to reach out in anyway possible and it's nice to know you aren't alone.
Thanks!
Michelle, Kelowna,
I have been living with vulvodynia for the last 2 years almost. I also went to maybe10-12 doctors before someone diagnsoed me. My trigger was anasty urine infection not treated properly on time. L ike thislady i was misdiagnosed and teated with several things before dx.My was with excruciating pain and burning feeling that wa son 24-7. in my vulva. my sexual life went tp hell.I was severely depressed to the point of suicide. I lost 30#, I stopped school shy of 2 classses to get my masters in nursing. I will renew them pretty soon again. I also have irritable bowel syndrome, intersticial cystitis, and fibromyalgia .I found a very caring army md that gave me a med coktail together with the gi md and an eurologist. I cannot say tha I am cured butI am a lot better. I have my good and bad days. This disease is cruel and evil. Destroys the person inside and out. My husband has been so undertsanding and helpful.There is hope but we have to make the world aware of it.
Maribel, EL Paso, TX
Thank you so much for sharing your story. The more we talk to each other, the more years of misdiagnosis we might be able to avoid. I just wanted to make a distinction between primary and secondary vulvar vestibulitis. What you described is secondary VVS - you were fine, fully functional, and then this terrible pain started out of nowhere. Some women have primary VVS - with pain from the very first time they attempt intercourse (or even tampon insertion). The causes are thought to be different. So for anyone reading who has primary VVS - please know that creams to cure infections and pelvic floor exercises are unlikely to help you. You might have an increased number of nerves from birth. If you've never been able to have pain-free intercourse, surgery might be the best choice for you (vulvar vestibulectomy). It's something to look into. I had it done. I just wish I hadn't gone through years and years of painful treatments for "vaginismus" first. Best of luck to everyone!
Amy, Springfield, MA
Thank you so much for sharing this story (and thank you to the Times for publishing it!). My story, like so many others', is similar. I've struggled with the condition for over 5 years, was diagnosed after 2 years and many, many doctors. Physical therapy really helped the most, allowed me to get pregnant with my first child, and now, 7 months postpartum, I'm able to enjoy--yes, enjoy--sex again. Hang in there!
anonymous, Minneapolis, USA
I'm 37 years old and had symptoms of vulvodynia since 1983 when I was only thirteen and there wasn't even a name for it back then let alone any treatment. I have scholiosis of my lower spine which may be a contributing factor. After I married in 2002 the pain had become unbarable on a 24 hour basis and sex completely impossible. For me, having acupuncture, seeing a chiropractor and taking calcium citrate did absolutely nothing. Surgery made it worse.
Antidepessants, however, work like magic for me in relieving the pain and pelvic floor physical thearapy once a week has made sex possible again. So after many, many years I can say there is hope. I am still surprised at how many doctors in this day and age still know so little about this condition and don't take it seriously at all, and not only men, but women doctors as well.
Thank you for sharing your story Kate. I know exactly how you feel. I wish you the best.
Chris, New Jersey, USA
Thank you for speaking out and choosing to share your very personal story. I was diagnosed with Vulvar Vestibulitus Syndrome last summer. I have been through physical therapy with a wonderful women's health therapist to relax my pelvic floor muscles like you were talking about. I am happy to say that the sessions and my own homework reduced my pain considerably. But, with my condition, there is still severe pain in one central location...the vestibule. I am lucky to be a good candidate for a surgical procedure that has some very positive results and I have chosen to undergo surgery this summer. I can only hope that more stories like yours gain national and international attention to not only educate women, but to make men aware of this serious condition. My husband is a caring, wonderful individual and I would not have come this far without him. I am grateful for people like you and all the other women who support each other.
Kate, Ellicott City, MD, USA
I am a 70 year old woman living in NH and can related to everything said. That is except the sex. After 35 years of being the care giver for a chronically ill husband ( related to WW2 injuries, kidney transplants, cancer and many staph and other infection) I finally broke down...that is my immune systom and I found myself exactly where this young woman is with the exception of sex. My husband was too ill. The antifungal cream was the killer....pain 10 on a 10 scale and the doctor just looked at me and said 'There is nothing I can do. This was a gyn !!! Sent me home. My husband was wonderful and supportive in his final 6 months.
I researched on the internet and diagnozed my own problem. I have interstaitial cystitis along with the chronic vulva pain. I did all the treatments mentioned and finally went to a psychiartrist as I wanted to die. She put me on cymbalta which worked almost immediately. 30mgs made it possible for me to drive 80 miles one back and then back home to see my hu
Ann :. Smith, Rochester, NH USA
Thank you for your brave voice and for sharing what so many of us have been silently enduring... some of us for years. I too wonder if I'll ever have a passionate love making session with my husband.
My condition hit at the same time as I decided to get sober. Menopause hit at the exact same time, as did turning 50, the exact age my parents were when they died... to top it all off, both my sons were leaving for college and I was going through empty nest syndrome.
But I have found some relief and hope through homeopathy, accupuncture and chiropractic and reiki.
I truly believe with all my heart that I can and will get through this, however the medical profession needs to get up to speed on this terrible affliction.
I am now on natural progesterone and estrogen, along with a pro-biotic pill that puts good bacteria into the system and destroys yeast bacteria.
I hope this helps someone out there who is suffering in silence.
Kat, Boston, MA
Thank you for telling your story so well. I hope that it saves many women from the trauma of feeling such intense, personal pain in isolation without a shred of hope that the medical profession can help. It has been a long road for me (years) and I am better but not pain free. Sadly, I also have fibromyalgia and the constant exhaustion has made it very difficult for me to make the effort to pursue medical treatment further. But, I have to tell myself everyday that I am MUCH BETTER than I was when it began. For me, it also started with a period of extreme stress, a yeast infection following metronidazole therapy for bacterial vaginosis, and a burning reaction to a Terconazole suppository. All the best to you and yours.
Karen, Boston, MA, USA
I was first diagnosed with Interstititial Cystitis which is often accompanied by Vulvodynia and/or Fybromyalgia. The Vulvodynia has become very bad this year. The Interstititial Cystitis diet of low acid foods was not helping nor the medications I was given. I have been on the Vulvodynia low oxalate diet, from the cookbook the Vulvodynia Foundation has created, for only a month or so, I has been a miracle how drastically the pain has subsided.
Sydney Collier, Marietta, Georgia, U.S.A.
I have had vulvodynia/vestibulitis twice in my life now, once for a year in the 1980s and then again 10 years later (1993). I still have it and am fighting to have my health insurance cover pelvic floor physical therapy. I married in 1992 and this has plagued our marriage but we have stayed strong and will not allow it to tear us apart. We can sometimes even joke about our lack of sex, if you can believe that! The toughest part is not being able to share it with most people because of its private nature. If we had a chronic disease like diabetes, it would even be acceptable to discuss with acquaintances, employers, etc. Be brave, keep fighting and know that you have sisters all over the world who are struggling with the same issues. Thank you for sharing your story.
Joyce, Michigan, USA
Hi Kate,
I, as well developed vestibulodynia, within the first 3 months of meeting the man I would eventually marry. Reading your article was like reading my own story. I'm here to say that I am better now, not cured, but pregnant with our first child as well. The treatment that proved most beneficial for me-pelvic floor training/physical therapy. Stay positive, keep trying. My thoughts are with you and all women who deal with this terrible disease.
Christina Kou, University Heights, OH
I to developed this condition. After 4 years of painful days and nights I can say now due to pelvic floor stimulation and 25mg. of amitriptyline I now have no pain what so ever. The OBGYN's I have seen in this area of the world have truely been a God send.
Patricia L. Fair, Oakland, Maine, USA
Thank you Kate Hodal! Go on Girl........we so appreciate you sharing this story. You put into words what so many of us experience, but which is so hard to share.
May God bless you, your marriage and heal you. By the way: the physical therapy should help! It has helped me more then anything...
Julie, Los Angeles, CA
I was disappointed that the utilization of Botox to reduce the spasm of the pelvic floor muscles failed to be mentioned in this article, I, too, suffer from the same condition, and without the beneficial effects of Botox injections into those pelvic floor muscles, I would be a bedridden, crying mess. Botox help to give me my life back to a very large degree.
Karen Wiesner, Santa Rosa, CA
I have LichenSclerosis which has improved dramatically since I started reading the message board for LS. I now use creams that have healed and soothed. (in my case, a hormone cream and Atopiclair and also Emu Oil at times.
I will always have the condition but it is rarely painful anymore. A big Thank You to the women in the LS Message Board (Yahoo).
R Joyce, Apache Junction, Arizona, USA
I don't think i could have said it better myself. Very descriptive, and accurate. How sad for all of us who suffer from this evil condition. it is breathtaking painful, and sometimes more than one can handle, especially with male doctors who don't have a clue.
mary, commack, , USA