Rb (Pala, Uk) on 05/20/2013:

Hello, Just wanted to write and say that I too have had almost complete success in treating vulvodynia. Sorry, this is a very very long post... But please take the time to read it, it might help you!! After 3 years of hell I have found a way of managing my pain, and learned a lot about my body in the process. I know how awful the condition is, and really want to help:

I had been suffering from provoked vulvodynia for three years, since age 17. It was ruining my life. I had pain-free sex for a year prior to this, and then after a minor back accident I started experiencing symptoms of nerve damage, such as spasming down my left leg and muscle contractions. Eventually this manifested itself into excrutiating vaginal and clitoral pain, and about a year after the vaginal pain began I started getting stinging bladder pain every time I urinated, which gradually got worse and worse. I would also be in pain at least three days after attempting to have sex - it would feel like I had been kicked repeatedly in the abdomen. I think because of my age doctors were even more reluctant to admit that I had a problem - I was told on many occassions that the pain was all in my head and that 'I just needed to have more sex'. Over the course of those three years I sunk into quite a depression, and was no longer confident about my sexuality. I viewed all men as predators, and was not able to experience the kind of life most of my friends were experiencing. University was horrible because I felt like I was the odd one out, who was in too much pain to date boys. And I used to internalise my pain as if it were a huge dark secret... I was too embarrassed to tell anybody, except a few close friends back home, and my mum. I was very lucky to have my mum's support - I would urge anybody who has this condition to speak to someone close about it, because it is too much of a burden to carry around on your own. There were times when I felt utterly hopeless and lonely and considered taking my own life - I don't know what I would have done without support from the people around me.

Anyway, I tried all the usual things... Estrogen cream, amitryptaline, gabapentin, acupuncture, a low oxalate diet etc. Nothing worked. I decided to see a chiropractor who specialised in pelvic pain that I had come across online, and she told me that my pelvis was severely misaligned, (due to my posture, my skeletal structure from birth and the minor back accident I had) and that this was probably affecting a nerve that supplied my genitals. She also suggested that I might have a tight piriformis muscle, which is the muscle that the pudendal (genital) nerve runs through - and this might be damaging the nerve. My left foot stuck out to one side when I was lying down, and this suggested piriformis syndrome. I had quite a few (expensive) sessions with her, but every week my pelvis would slip back into its old misaligned position because my core muscles were not strong enough to hold it in place, and the harsh chiropractic technique seemed to aggravate the nerve rather than help it - I was having bad flare-ups where my muscles would spasm a lot and pain would shoot down from my lower back into my left hip, down to my knee, my big toe... The sexual pain did not improve either - it was still literally extrutiating to attempt sex or any kind of sexual contact, and unfortunately I had no understanding partner who I could practice with -not many boys in their late teens would stick around with someone with my issues, I thought. If I got interest from a boy I would always push them away, and completely ignore my own feelings in the process. Sex became so scary and I not only worried about pain but also my own inexperience from all that time I was forced to be celebate.

After much pursuasion and a long time to-ing and fro-ing from surgery to hospital clinic I managed to convince a reluctant dermatologist ( - who told me that she had been seeing women with my condition for 40 yrs, and had not managed to cure one of them - she also told me that my pain was 'probably all psychological' -) to refer me to a neurologist. The neurologist carried out an EMG test on my back and yes - I did have a trapped nerve in the lumbar region of my spine. The neurologist said that this nerve could also be affecting the nerve that supplies the genitals, the pudendal nerve - so I am due for another EMG to find out if this is the case in about a weeks time.

Six weeks ago, despairing because my pain was still very bad and I had tried and failed at everything the doctors had suggested, I went to see a physical therapist. The man I see broke his back in a motorbike accident in his twenties and was told by doctors he would never walk again. He is now in his fifties and super fit. He trains many people and has a great knowledge of the human body.

I told him my symptoms and he agreed that a tight piriformis muscle might be constricting the pudendal nerve. After doing some stretches she identified that I did indeed have piriformis syndrome. Over the last six weeks he has been giving me a course of exercises to stretch out the piriformis muscle and realign my crooked pelvis, and I do stretches similar to those described in Amy Stein's book (I do have a copy of the book, but I think it was very important for me to be told exactly how to do these stretches properly, so as not to do more damage than good - I am also very lazy and it helps me to stay motivated seeing a personal trainer once a week. I think also, each body is different, and it is important to tailor your regime to suit your needs) and in that short time, I have completely eliminated my muscle spasms, I no longer have back pain that radiates into my leg and foot, and my bladder pain has disappeared. My vulval pain, that was at an 8.5 - 9 out of ten, is now at a 1 - 2. I am hoping this will continue to get better - I am also trying meditation in order to dispell any anticipated pain that my brain might be holding on to. Seeing a physical therapist is quite expensive but 100% worth it. Once I learn to do these exercises properly and integrate them into my daily regime, I will have them for life, and will no longer need to see the therapist.

In order to maintain this pain free life I have to do the stretches and exercises for at least half an hour every day. In modern life we are forced to sit at desks and slump in chairs a lot and this is so bad for our posture - it is amazing what stretching out the core muscles can do. Through exercise I have effectively cured my tight muscles and piriformis syndrome which were pressing down on a nerve. It is important that we have strong supportive core muscles before we can work on the superficial muscles, because it is the ones deep down that stabalize everything and make sure we do not get musculo-skeletal problems.

Having to deal with vulvodynia has completely changed me as a person. In a warped way it has actually benefitted me in that I was forced to examine myself as a person rather than just a sexual object - I used to play on my sexuality a lot, and having this condition has really taught me to not rely on these assets, and instead develop a strong character and personality that makes me valuable for more than just my physicality. Sorry if this sounds cheesy, and I'm not trying to peddle dime-store feminism or anything, but it's true! I couldn't rely on male attention for my self esteem anymore so I had to find it elsewhere, through developing hobbies and exploring more Buddhist ideas and accepting the bad things that happened to me. I have also got more male friends now, because I have been able to develop strong friendships without any sexual agenda. I am starting to speak up about my condition. I have told two close male friends and both have been sympathetic, and not treated me any differently. Any man that is seriously going to judge you for this is not worth your time of day.

For those of you in England, the Vulval Pain Society puts on some very inspiring talks about managing pain. I was so nervous about going to a talk but it made me feel optimistic. Many of the speakers are women who have managed to cure themselves though things like hypnosis and meditation. David Nunns, the head of VPS, also speaks, and gives a lot of valuable information about how to navigate the heath system with a condition that a lot of so-called 'health professionals' are completely ignorant about. The best thing about the day was meeting many women and their partners with the same issues as me. Vulvodynia is a very isolating condition and it is so comforting but also saddening to know that I am not alone, and there are many other women experiencing the same things as me. There were women of all ages at the talk - at least five women were in their early twenties like me, which was reassuring.

The last thing I will say is that I know from experience that the worst thing to do when you are feeling depressed about this awful condition is spend hours trawling the internet reading about people's experiences - most people that post online about this choose to be negative, sadly. This is not beneficial for the person writing the negative post, or the person reading it. I think as we are all going through this together we have a responsibility to try and offer helpful and encouraging advice to each other.

In the next few weeks I am going to try a method for neuropathy called Body Stress Release. It is supposed to be beneficial for vulvodynia - you can find out about it online. The pudendal neuralgia EMG test is very scary and invasive but hopefully it will give me even more answers when I have it. I wish you all the best of luck and hope that many of you will turn to exercise as a means of curing your pain. Thank you for reading this! There is always hope for the future no matter how desolate things seem now.

Anna (Las Vegas, Nv, Usa) on 05/20/2010:

Vulvodynia Remedy: Pelvic Floor Muscles Stretch

Simple vulvodynia remedy/solution/cure (that worked for me) I'm so excited to have finally solved my problem that I need to share it with all of you, because I, like you, suffered SO VERY MUCH and I was so desperate for a solution! Unfortunately there are too many wrong, confusing, even dangerous suggestions online about crazy or expensive treatments, like surgeries, anti-depressants, oxalate diet, etc., when the solution is so simple, yet it eludes everybody. I am proof that vulvodynia can be treated very naturally, easily and FREE at home. If my story can help somebody, at least my pain has had a purpose. I had vulvodynia for almost a year, so bad I couldn't wear underwear/pants, sit down or go by bicycle. [As if it wasn't enough, months after it all began I ALSO started experiencing what I can only explain as urethral spasms (those are actually worse than the vulvodynia pain, because they always came unexpected). I thought there was something wrong w/ my urethra, I even went to a urologist who couldn't understand what I had and didn't find anything wrong w/ me but nonetheless gave me antibiotics which turned out to be totally useless & unnecessary because, as my gyno confirmed, I didn't have whatever strange invisible infection the urologist thought I had. Brilliant!] Anyway, after lots of research online, I realized it was possible that vulvodynia could simply be a muscle problem, so I finally went to a pelvic floor therapist, who confirmed lots of things to me. She did some manual trigger point therapy (which you can do yourself), but mostly what I got out of my experience with her was hope that it could be treated, which was the most important thing to me as the pain was driving me insane. Therapy helped a lot, but as I am unemployed I couldn't afford more sessions. Well, at least I knew for sure it was a muscle problem and nothing else, as I had already experienced a major improvement thanks to her. See, the reason that doctors can run millions of tests on all of you and find nothing wrong/related to the pain is because vulvodynia is simply caused by the SHORTENING of your pelvic muscles due to the trauma of, say, an infection, accident, bad posture, bad habits, scoliosis, or even just stress...you name the cause, you're probably right. Those poor, stressed muscles have contracted to the point of causing internal chronic spasms (whether you feel them or not), which tug at your nerves, thus giving you pain! The secret to reverse it, then, it's simply to LENGHTEN the muscles back to their original shape, by stretching them. I, by the way, requested a fantastic book from the library ("Heal Pelvic Pain" by Amy Stein) which explains all of this in detail. You should look into it, too, if you are looking for more info about how numerous pelvic disorders are simply caused by the shortening of the muscles & by trigger points (she explains how to do trigger point therapy -which I love- on yourself, however I found that the stretch I "invented" was enough to make the trigger points go away on their own!). One of her most useful pieces of advice was the part about "dropping the pelvis": until I read her book I never thought/realized how super tense my pelvis always was. Catch yourself anytime and you'll see that if you have vulvodynia your pelvis is all tensed up, drop it! (It's the same feeling as when you have finally reached a bathroom after holding it in for a long time.) Make a conscious effort to drop it/relax it/let go of it as often as possible until it will become normal to you again. (To better understand what I'm talking about, see her book.) I did the long routine of stretching exercises (for different parts of the body) that Amy recommends however I felt none of them were really specific enough to solve the problem, or at least I wasn't feeling any difference fast enough (I'm kinda impatient)...so, as I am unemployed and I have a lot of time on my hands, I started mulling over where the problem was specifically arising from...I thought: it's not my back, or my butt, or my thighs,... my urethral spasms & vulvodynia pain MUST stem from the front of my pelvis (the area below my navel). Well, then! Those are the muscles I have to lengthen! So I created my own (easy) specific stretch exercise, which amazingly accomplished the job very quickly! I felt immediately better the first morning (I had no more urethral spasms! What a miracle!). After 2 days I was already MUCH better, and after a week my vulvodynia was virtually all gone! The longer you do it, the better. It's something you can do as a tune-up once in a while, too. THE SOLUTION: This is done in bed for as long as possible while you read or watch a movie (you'll know when you've had enough), you can get up once in a while if you really need to move around. (I guess you could try it on a table too, I used the bed as it's more comfortable and you can stay there longer.) On the VERY EDGE(<-important!) of the bed, without falling, put as many pillows as possible under your pelvis (it depends on how high your bed is, mine is pretty low), make sure you have some support for your back, too, if necessary, in order to be as comfortable as possible (you'll figure it all out on your own), but the important thing is that your pelvis needs to be a little HIGHER than your back TO CREATE AN ARCH! Then, let your legs hang from the edge of the bed, creating as much of a backward arch --between your thighs & your pelvis-- as possible. Simply lie there and feel the muscles of your pelvis and lower abdomen S-T-R-E-T-C-H. It's very easy. I even extended alternately my legs for further stretch of the pelvis, one leg at the time as much as possible. I did all of this while reading, so it's no big deal, it actually feels good. (I have a tile floor so I used a towel under my feet to made the sliding easier). This is all folks! Let me know if it works for you. If not, get Amy's book and try her stretches, maybe the muscles that you need to lengthen are not the same as mine. It depends on where your pain is, I guess. FURTHER ADVICE: #1 Months ago, when my pain was the worst, I noticed that the only thing that cut my pain in half was drinking a whole stalk of celery juice. Within hours it gave me so much relief! It might be for the same reason that celery is good for rheumatism (I don't have it), I'm not sure why it worked, all I know is that celery juice surely was a huge help! And it went to prove that my vulvodynia had nothing to do with too much oxalates, as celery is high in oxalates! If you strongly believe that your vulvodynia is caused by oxalates (very unlikely from what I've read) I highly recommend that before embarking on such a restricted, crazy diet at least you bother to get a test to confirm whether your oxalates are off, most likely you'll see that everything is normal! #2 As my therapist and Amy Stein say, do NOT do kegel or similar strengthening exercises until the pain goes away first! The problem is that exercises such as kegel actually tend to further contract/shorten the muscles which, in the case of vulvodynia, are already too tensed up to begin with! The exact OPPOSITE needs to be done, instead: RELAX them! #3 Do NOT constantly touch/mess with the area that bothers you! As my therapist said: if you keep on pressing on a bruise, you are preventing it from healing! #4 Also, as much as possible, try NOT to think about it, I know it's really hard, but you need to rewire your brain so that you DON'T constantly EXPECT pain from that area! Otherwise you're keeping the pain alive through a self-fulfilling prophesy.

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