Vulvar Vestibulities / Vulvodynia may be a type of Lichen Planus
I have had extreme (like on fire) pain in my vagina since I was 25 years old (I am 58). Many doctors, no answers. About 2 years ago I got very raw lesions in my mouth, inside my right cheek and had them biopsied. Just looking at the white striations and irritated area he had guessed it was Oral Lichen Planus, and he was right. It is an autoimmune condition and can show up in your vagina too. It basically means the mucus membranes in your body are breaking down. I'm not sure if I am allowed to post a link but this doctor has really clear easy to understand explanation of it and some food and vitamin ideas that are supposed to help. I also had one blue mole about the size of a grain of rice show up on my leg just like he says. Mine doesn't hurt unless I provoke it, thank goodness, so I don't know if his ideas work but it does seem eating chickpeas (garbanzo beans) helps me. https://draxe.com/health/lichen-planus/
PLEASE READ THIS PLEASE!!!!!!
This is to everyone but especially to the woman with the 12 year old with Vulvodynia. I got Vulvodynia this year at 22, and this was honestly the worst thing to ever happen to me, I couldn't imagine how hard it must be for such a young girl :( Please consider what I am saying here even if your daughter is not up to the idea, this is truly for her own good and she will thank you for it later.
If you are coming across websites/blogs/forums that are telling you to change your diet, DON'T IGNORE THEM. I've had Vulvadynia for four months, and it was getting worse and worse. I also began having early symptoms of IC. I was beginning to lose control of my bladder, I experienced a very painful burning sensation every time I peed, and I needed to urinate every 10 minutes even when I wasn't drinking any liquid. I started to become very depressed, I was crying any moment I was alone. I found myself sobbing in the bathroom stalls at work and school, I had to constantly fight tears in public because this was causing me so much pain. I was so behind in school because instead of studying or working on assignments, I would be on my laptop for hours with dozens of tabs about Vulvodynia on my screen. It was the only thing on my mind and I felt so alone since it's not something I wanted to share, and even when I did, it seemed that nobody understood what I was going through physically or emotionally. I was already suicidal, I can't believe when I read these forums and I see that these women have been dealing with this for years!! Idk how they have been able to cope, but bless them for enduring it for so long.
Last month I began a raw food diet, mostly raw green vegetables and green smoothies. I would say that within my first three days, my pain levels went from a 9 out of 10 to a 2 out of 10. After my first week, no more pain at all, just discomfort and my IC symptoms were completely gone! Then the discomfort from my Vulvodynia went from being constant to intermit. After a month into this diet, despite all the times I cheated, I have gone several days with no discomfort at all. PLEASE, start googling raw food detox or how to heal your body with raw food. This may seem difficult, but if you are determined to finally get rid of your pain rather than jumping from doctor to doctor and medication to medication just to "treat" these symptoms (which will actually eventually lead to more issues later in life), then this is going to do it and it will change your life in the process.
Doctors don't know or honestly care about Vuvlodynia, you have to take matters into your own hands and be your own advocate ladies! There is a lot of information online and in books as well as amazing people on youtube that have a vast knowledge of this stuff and they are not trying to sell you anything, they simply want to help people cure their diseases. My favorite Naturopath youtuber is Montrealhealthygirl!
I am not healed completely, but I am optimistic that I will eventually cure my Vulvodynia. There is even a woman online who says she got rid of her Vulvodynia, look up Laura Lehraupt on YouTube, specifically the video titled "how I healed Vulvodynia". In my case, I know that this diet is working because when I first started, I felt a much more severe pain when I cheated on the diet and now I barely do. For instance, yesterday I had my first true and real cheat day with three slices of pizza, 3 cocktails as well as smoking at the end of my night (all terrible, especially if you have any sort of chronic pain). As a result of my cheat day, I had very minor discomfort in the morning, if I did this in the beginning of my diet, I am certain that my pain would be severe and I would have to miss class or work like I have been doing often for the past few months.
Bottom line, even though I was skeptical, I was willing to try anything to CURE my Vulvodynia, not simply "treat it". If you open your mind to this, you will be so incredibly enlightened! Even if you don't believe this will work, what is the harm in trying this for one week? Worst case scenario, you're going to be nauseous or break out in the first few days which is actually a great sign because it tells you that your body is detoxing! You would need to power through despite these symptoms by the way.
Everybody's bodies work differently, so you will have to experiment. For instance, you might not be able to eat raw vegetables at first, your body might be so weak that it won't be able to break down raw food. If you have a chronic pain condition, this is likely the case and also a sure clear sign that you are currently at a very unhealthy state and you need to detox your body!! Once your gut is strong enough to handle raw vegetables, I suggest you stop cooking them since when the food is raw, it has it's highest levels of nutrients. Nutrients is what your body needs right now, you need to help your body get rid of these toxins by giving it a break and eliminating all the processed and unnatural chemicals we call "food" these days. You also need to be consuming the right amount of nutrients to help it fight off your disease. Your illness is a sign of bad health, so you need to get to the source and get your body back to optimum heath. I can't explain all of this on this post, so please do some research and begin to educate yourselves!
Also you need to start drinking A LOT of water, specifically water that is high in alkaline levels, I'm talking at least 2 liters a day. Also start looking into the alkaline diet! The best book I read on this is called "The Acid-Alkaline Diet for Optimum Health" by Christopher Vasey.
Whatever your doubts are, just think of it this way, what is earth's food? In other words, what are the foods that we know for certain humans should be eating? Raw and organic vegetables, fruits and nuts. This is what humans were meant to eat before we ruined it with all artificial food that we don't realize we are addicted to. Haven't you ever come across those articles about processed sugar being as addicting as cocaine? We don't fully understand the human body yet, but after this, I am convinced that our bodies were made perfect. On the other hand, I think chronic pain conditions like Vulvodynia are signs that you have slowly but surely made your body ill due to your environment, the number one factor in our environment is food since we are directly consuming it. And especially in the Western world, most of us have been consuming this food since we were kids.
I am praying that you consider taking this advice. What I went through in just a short few months was unbearable, no one should have to endure this for another second! So yeah here I am on this site sounding like a health freak, which I never in a million years though I'd become. I still love the bad food and I think it is important to allow yourself a portion of the foods you want from time to time. Overtime, you will stop craving them anyway. In my opinion, the results are better when you are not as high strung and stressed about your diet. Good luck ladies, I wish you the best in whatever route you decide to take!
So I had vulvodynia (I have Interstitial Cystitis) and I thought it was yeast because I suspected that was what was causing my IC issues. I went to my MD Kinesiologist and he found that I had the herpes virus attacking my sacral nerves, causing me genital burining and itching. My doc tested me for remedies and put me on a homeopathic series and freeze dried garlic, which have helped. I also had him check olive leaf extract and chaparral, which are known to combat the herpes virus. I was just wondering if anyone else had luck with olive leaf or chaparral in killing the herpes virus.
Vulvodynia: I tried using all the listed remedies for the severe burning all of which provided some relief for the symptoms but no cure.
Out of desperation I tried a fast with a special soup called Hippocrates Soup by Dr. Max Gerson made for cancer and the burning disappeared within 2 days. You can find the recipe online. Totally miraculous. Everything back to normal after months of not being able to walk or do anything without pain.
So I'm posting this hoping it can help anyone out there. This is a fast which should be used for a couple of weeks. It's not easy and should be supplemented with vegetable smoothies only. No other food or drink, take protein pills - grass fed liver pills only, available at health stores or amazon. No fruit but Kafir yoghurt is okay.
The worst thing that can happen is you cleanse your system. It's really bland, do NOT add salt or have salt at all in your diet during this time. Add only a cup of water when simmering soup and don't use a pressure cooker, only stove top.
I hope this helps someone. Be sure the veggies are organic.
I suffered with vaginal burning and swelling for over 25yrs. I tried every antibiotic and cream available but to no avail, I tried taking baing soda in water sometimes adding lemon juice and acv, this gave tempory relief. I was suffering with constipation after a spinal injury and decided to take magnesium citrate 400mg each nite, I was taking it for about 2-3 yrs and never had an attack of burning or swelling especially after intercourse, I stopped taking the magnesium about 3-4 months ago and 2weeks ago after intercourse it came back with a vengence so it was back to the baking soda with water, fluconazole tabs, icepack between legs, nothing worked, I was searching my mind to see what I may have done or taken that would start all this up again and it dawned on me that the only thing that had changed was stopping the magnesium citrate, so I'm off to the health shop first thing in the morn and please God this will cure it again, I will keep you posted. Cathy
I was diagnosed with vulvodynia in 2010. I had a lot of burning for about 2 and half months before I knew what it was. The doctor put me on amitriptylin, liodacaine and a very small dose of a hormone that was directly inserted vaginally. I did go on the medication but I think my burning started to go away on its own, because The medication to only help with symptoms could of not acted that fast. The burning did go away and stayed awa for 6 years. About a month ago the burning came back. I am taking the natural root this time. I am taking St John's Wort in place of amitriptylin, ice packs and oatmeal baths instead of liodacaine. Multi-probiotic and vitamin b supplements. Good Healthy low carb diet. Avoiding processed foods as much as possible. I do walk as exercise, I think that it is the safest.
This post will be long and as detailed as possible because like myself, I am sure many woman want ALL the advice they can get for this mysterious condition. I want to tell about the moment I began to feel the pain, the in between, and how I went back in time and really analyzed myself and my past leading up to this.
In July of 2011, I began to notice the pain. As the months progressed it became worse. Most of my life I have been susceptible to Yeast Infections and Bacterial Infections. They were so common that I didn't even need to go to the Doctor to get them diagnosed anymore. I would just call in and they would send the prescription to my Pharmacy. Well, I thought I had one or the other multiple times during the past 6 months, but the medication never seemed make the pain go away or make me feel better like it had always done in the past. The symptoms were still there. Urinating was painful and I often thought I had a UTI. But I have had UTI's before and this didn't feel exactly the same. Urinating was just painful, burning, irritating; I never really cramped up like I had all the times I actually had a UTI. And sex was just PAINFUL. I had a boyfriend at the time and I never wanted to have sex because of the pain, but many times I would just suck it up and endure the pain because I did not feel comfortable talking to him about my ailment and I didn't want him to suspect anything else or feel like things were weird. At first it was only painful when he inserted himself and then pulled out. It burned. Maybe I wasn't aroused enough, but after a while I realized that wasn't the case because I could tell that I was. After a while the pain was with each stroke, and it would get worse and worse. Because I was anticipating the pain, during intercourse I would tense up the hold time. I could never relax. I would just close my eyes and hope that it would be over soon. Till this day I am upset that I didn't speak up and let him know the pain I was feeling because the more I think about it and the more research I do on Vulvodynia, I realize that my tense muscles "down there" during intercourse may have been the cause of this. There are so many accusations and "possible" reasons why women get Vulvodynia, all of which I will not list because I am sure you already know them, but for me, I think I found my answer as to how I got it.
I was diagnosed with Vulvodynia in early December 2011. Like many women, I became depressed and felt helpless. I mean, when your Doctor tells you that there is no known cure and that they do not know what causes it, you become hopeless. I began to do research EVERYDAY, trying to find ways to cure this and get rid of it. The thought of not being able to have sex again or have a "normal" relationship (Normal in the sense of a healthy sexual relationship with someone) made me even more depressed, but I knew I had to do something. I found a few articles and blogs where women talked about their Vulvodynia and how they controlled it, had it for years, or still have it and can't get rid of it.
Then I came across Earth Clinic and had some glimmer of hope. After reading a few of the posts on Earth Clinic, I decided to try some of them out. I tried the Coconut Oil. That did not work for me, BUT I now take the coconut oil capsules because they have other benefits. It just did nothing for me down there. I started taking Calcium Citrate plus Magnesium plus Vitamin D3 (all in one capsule). I also began taking Cranberry Supplements (this helps with the bladder muscles - it helped to relax me which has eased the pain a bit). I also take Probiotics to help regulate the flora in my body. I tried to be on a Low Oxalate Diet, which was SO HARD, but I tried it. I was willing to do whatever it takes. Overall, I was feeling a little better, but it still was not helping.
After trying all of this, I had sex for the first time a month after being diagnosed. The pain was still there, but I told myself to keep relaxing, don't tense up, try not to think about it, etc. But we all know that is easier said than done. Sex was still painful. I decided to do more research and realized I never fully tried some of the exercises people were talking about. I began to look into Pelvic Floor Muscle exercises and Perineum Massage. I started to realize that during sex I would tense up a lot. My partner liked to put me in positions that weren't really comfortable for me and I would tense up because it would hurt sometimes. With some positions I thought that was normal because it wasn't a burning pain, just a pain many women say they have when they are in certain positions, an uncomfortable pain. But it was uncomfortable the whole time. Well one of the possible causes of Vulvodynia is Sexual Abuse. Now, I was never sexually abused nor am I trying to compare my situation to a sexual abuse victim, but I am saying that tensing up and "bracing yourself" you might say, have some similarities. Could I have possibly traumatized my muscles? Did the penetration make me have nerve damage due to tensing up during intercourse? Sex with my partner wasn't that painful UNLESS he put me in positions that I was uncomfortable in (I am not flexible, so he would put my legs and hips in positions my body was not use to which in turn tensed me up). I began to really think about it and thought, maybe my Vulvodynia is caused by my tense muscles and overtime I have traumatized them.
I read one post about a woman who did a Perineum Massage where she would insert her thumb into her vagina and push on her perineum as hard as she could for 30-45 seconds. I began to do this every day, 4-5 times a day. At first it was painful, it burned, it felt uncomfortable and I thought I would not be able to tolerate it. But the key is to relax your muscles while you do this. The first few days it will be painful and hurt, but after a while, you will begin to feel better and the pain will minimize, if not just minimize but actually go away completely. I also began doing the Pigeon Pose stretch to help open my hips. Another stretch I do daily is lay on my back with my feet on the ground and knees up. I then open my legs and let them fall to the side, keeping feet together. You will feel a tremendous stretch in your groin. It has been 3 weeks and I feel 95% better. I do not have the burning or itching sensation that I had those previous 6 months. I could sit at my desk and work without having pain. I can pee without the burning sensation. I have taken up Yoga as well, to help me relax. I feel that has something to do with it too. Relaxation is key. I was stressed out and when you stress, your muscles feel it. For me, the supplements and the Perineum Massage have helped. I have not had sex yet, that's why I say I feel 95%, so I am not sure if this has been my total cure, but I definitely notice a difference in my day to day. I feel normal again.
Just to clarify, this is what I have done to try and curb my Vulvodynia (which seems to have worked) and I do all of this DAILY:
Again, I have not had intercourse yet, so I cant say it is completely gone, but I feel so much better, I am much more positive and I know that I am closer to recovery. I hope this post helped someone at least. It may not help everyone, but it has helped me. Good luck , stay positive, and RELAX.
(San Diego, Ca)
(San Diego, Ca)
(Toronto, Ontario, Canada)
(Bury Village, West Sussex,, England)
WHAT REALLY HELPED ME!!!
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.
Pelvic Floor Muscle Stretch
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.
(Las Vegas, Nv, Usa)
(Oxford, Buckinghamshire, United Kingdom)
(Fort Lauderdale, Fl.)
(El Centro, Ca)
Hi I have had my own trouble with Vulvodynia and I wanted to post my success with it since there is so little information about it.
Once I realized that what was going on down there wasn't a yeast infection I started to do research, I had no discharge, just redness, swelling. For the most part I only felt pain and itching when I touched down there. Dynia means pain. Doctors don't know what it is and they don't know how to treat it, even prescribing antidepressants for it when that isn't going to help at all.
Ok now for what you came for: What I found through my research is that trauma to the muscles of my hoo hah caused my vulvodynia. This was caused by forcing the aha moment by locking up all my muscles during my uh alone time if you will. One thing that I have tried is a cranberry supplement, mine is the once a day one that can be bought at the Mart we all know of.
According to my research a UTI infection affects the same or similar muscles or something that Vulvodynia does, so I take a cranberry supplement every day because that helps so much with UTI's. I also take a calcium citrate supplement to help with oxalates, you can also get it from the Mart and the one I get includes Vitamin D and Magnesium for better absorption, it's a name brand.
I also have Bacterial Vaginosis so I take extra amounts of Folic Acid and an Acidopholus supplement every day and extra if I feel the itch start. This has been the only thing that has worked for my BV and it works very well. Funny how doctors don't think vitamins and immune boosters will fix the body's problems.
The coconut oil didn't work for me. But what has made the most significant difference and has for the most part cured my Vulvodynia has been the pelvic floor stretches that I do. If muscles are traumatized in some way they stay tensed and contracted, just like they would if you were in a car accident, so they must be relaxed and this is accomplished through stretching. The one that has worked best for me is a perineum massage where I take the thumb of my dominant hand and press it against the bottom of my hoo hah towards my rear hole as hard as I can without hurting myself but so I can feel the strings or muscles down there pull and stretch. I count slowly to 30 or 45 and release. I do this every time I go to the bathroom or at least 3 times a day when it hurts, which for me only seems to occur after sex now. After sex and the next day of doing this along with some other stretches and I can totally avoid any discomfort I also do a stretch where I lay on my back, the soles of my feet pressed together with my toes up against something solid so the heels of my feet are as close to my butt as possible. I then let my knees fall to the sides and hold this position for as long as is comfortable. This stretches the top or front muscles of my hoo hah. Another is piling pillows under my butt while letting my legs dangle off the bed as another person suggested. I try to do this for at least 15 minutes at a time to get a really good stretch. This stretches similar muscles as the previous exercise. This isn't as easy to get out of and makes my back hurt some so I don't do this unless I'm hurting. I have started putting ankle weights on to assist in extra pull. I don't recommend starting out doing this. Adding more pillows should be gradual as well. One thing that has also helped me is masturbation, believe it or not. My little friend doesn't penetrate me. One thing I do differently now is I make sure the soles of my feet are touching just like the exercise I mentioned above except I'm on a bed, and I don't force the aha moment. Doing this pulls the muscles in a different way and for me seems to relax them. One more exercise I do is called the pigeon pose, I feel it stretches the pelvic floor from different angles and helps some. My Vulvodynia has gotten so much better doing these stretches that I now only have to do it after sex and if I'm feeling any discomfort, which I really don't. It is such a relief cause I was going out of my mind. I hope this helps somebody. The info I found was sparse on this topic so I want to be as detailed as possible which is why this post is so long. One thing I recommend is people look up pelvic floor STRETCHES online to find more exercises. DO NOT do the exercises that make you clench your pelvic floor muscles this will only make the pain worse! It must be a stretch. You can slowly add those other exercises, also called kegel exercises once the pain is gone, but not till then. It may take some time but I found ones that work for me and didn't have to pay for lots of doctors that don't work and have no clue. I think having a regular stretching or yoga program will keep those muscles more supple in general, along with a regular exercise program.
One final thing: I have found that reducing the amount of sugar in my diet helps immensely with how often I get yeast infections and the general health of my lady parts. Also becoming gluten free has helped immensely as well.
If anyone has questions email me at cbscientist(at)gmail.com
I have struggled with vulvodynia for five years now and through my desperation I think I have finally found something that works. I have tried everything imaginabled from prescriptions to remedies on this site and it is always the same story, it works and then one day it flares back up and I lose all hope in a miracle cure. Recently baking soda was that cure for me, when it didn't work anymore I was in so much pain. I was desperate! I used an ice pack to try to get the swelling to go down when I woke up in the middle of the night the ice pack had busted open and I had tearing, sores, and swelling. As crazy as it sounds I had a natural beeswax chap stick that was peppermint flavored sitting beside me and I thought, that will give me a cooling sensation and I wont have to worry about a bag of ice busting... Hmm why not? It burned pretty intensely for about a minute but it was a cool burn so it didn't bother me.
I was able to get some sleep and when I woke up all of the tearing, sores, and swelling were GONE! I kid you not! I was so excited nothing I've tried worked that quickly before. I don't really know why it worked but I have continuously applied it twice a day. Haven't had a flare up in over a month since doing this. I don't think it really "cured" anything, I worry if I stop it I could have another flare up. It did however stop the pain and keep it away since I've been using it. I've also been going to the chiropractor, stopped my birth control, and am taking herbal adrenal support remedies to help balance out my hormones. I've been doing that for about 6 months now and I feel it has helped tremedously but has not cured me yet. It does seem to slow down the frequency of flares I do have so I feel I am on the right track but for immediate pain relief the chap stick 100% took care of the issue. I hope this helps someone!
(Charlotte, Nc, United States)
I was very surprised to see Vitamin C recommended in a post here as a treatment for vulvodynia and/or IC. Vitamin C converts to oxalate in the body. It is also highly acidic. My personal experience with Vitamin C was that it caused intense flareups. I avoid it at all costs!
There is talk about vulvodynia being an allergy. I currently take 1 10mg elavil a.m. and p.m. along with 25 mgs of benadryl and the pain of the general vulvodynia has stopped. It's been 2 months.