Vulvodynia Remedies

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.

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

Ana, I have tried everything possible and I was really starting to give up hope and becoming very depressed that at the age of 24 I was going to live the rest of my life with this pain!! I have done HOURS of research and finally came across your story and I tried your stretch exercise one time for about 45 mins and I have little to no pain since then.. I feel like this is a miracle and you are heaven sent!! I seriously can't thank you enough and I would really like to get the word out about how these stretching exercises and how they really do work!! Thank you sooo much.. You have saved my life!!!

Tems, I'm so sorry your daughter is suffering. I'm still trying to figure out how to stop my vulvodynia, but I have come up with something that provides instant, cooling relief when the pain is bad. I add a tiny amount - about the size of the head of a pin - of Tiger Balm white ointment to some coconut oil or emu oil, and rub it into the vulvar area. It should feel like a fresh, cool breeze, and lasts for a couple hours. If it burns at all, just use less Tiger Balm. This has been a life-saver for me over the past year and a half, and I hope it is helpful for your daughter. You can find Tiger Balm on Amazon.co.uk if it's not available at the chemist. Best of luck to you!

I started to experience intense burning earlier this year that was constant for nearly 3 months. I was in agony. Had multiple yeasts and UTI tests done, with the result coming back negative. Much like everyone else's experiences here. What I found that finally soothed the burning was taking internally baking soda tablets (or powder mixed in water)

Since then I've had a few minor and short relapses with the burning. I've noticed now what brings it on, and what soothes it quickly.

Too much sugar, caffeine, or alcohol, combined with being dehydrated from not drinking enough water will definitely bring on a flare-up. Yes, diet is extremely important. I already eat mostly vegan and have had a very clean diet for many years. I notice when I start to eat too acidic or unhealthy processed foods or am dehydrated the pain comes.

What I have found that heals it quickly are tea tree oil suppositories. (can find on Amazon) One fully inserted and one hanging out at the vaginal opening for direct exposure. Within 30 minutes the burning will be gone, only to return whenever my diet, hydration, or stress levels become unbalanced.

Everyone's triggers and cures may be different, but this is what has worked for me. After having the immediate relief with tea tree oil suppositories I'm beginning to believe that it is some sort of yeast or bacteria that may be deep in the skin, not necessarily in the secretions that are typically tested.

My mom mentioned that one of her friends had IC, with the same burning sensations, and drinking baking soda to alkalize her bladder worked for her.

2 months before my symptoms started I did have a UTI with blood and when I peed I had nerve pain shoot down my leg! Never had such a pain with UTI before! I did take antibiotics and it cleared up, but I was reading how sometimes all the bacteria isnt killed off and remains stuck to the bladder walls. And this kind of imbalance in the bladder can be connected to causing nerve pain in the vulva. I'm suspecting some combination of all these things mentioned above is what triggered my vulvodynia.

I purchased a supplement called D-Mannose yesterday, It is a type of sugar related to glucose that your body does not absorb but pisses out. When it's in the bladder it prevents bacteria from sticking to the wall of the bladder, and then you can pee out the bacteria. I will try this over the next few weeks.. I'm hoping this last flare up I had last night will be my last one ever. SO YES. DIET and HYDRATION are SUPER IMPORTANT! and possibly look into creating an internal environment that is inhospitable to hidden yeast, candida, and bacteria.

I just have to share my experience after hearing these Vulvodynia horror stories. I suffered for 3 years, yes years, with this pain. Add menstrual cycle of blood and the pain was consuming. Saw about 4 specialists, had biopsies, laser treatments, ablations, etc. I read, and read and read. Mix up a potion of Desitin and few drops of tea tree oil. I kept it in a tiny container in my purse, to use after urination through out the day. I cleaned the area with sensitive wipes, then applied the creme. Oh my gosh, so much relief...not too much tea tree oil, it too can burn.

At my worst, I also wore an estrogen patch. Also took plenty of Vit E, Vit D3, and some coconut capsules.

If this helps just one other person, glad I took the time to post.

I second the baking soda douche treatment, I suffered for two years with cyclical burning, pain, irritation, and pain with sex. The symptoms were always worse during the couple weeks before my period. I was treated for yeast and bv multiple times but nothing brought relief. I also had a skin biopsy done which only revealed inflammation. I also began taking a lot of probiotics during this time and my symptoms got worse and worse. I eventually moved to Houston for work and found a specialist here who immediately diagnosed me with cytolitic vaginosis. Now, as long as I do the baking soda douches regularly, I am good to go!

After two years of suffering, this has been such a huge relief. I do have some residual pain with sex, probably from a learned 'guarding' response of the pelvic floor muscles, and I am getting physical therapy for that and I apply lidocaine jelly before sex. Things continue to improve.

Parasitic infections such as trichomoniasis, amebiasis, and schistosomiasis usually involve the vagina as well as the vulva. The diagnosis can easily be made by identifying the organism on a cytologic preparation or in a biopsy specimen. A parasite treatment may help. Black walnut, wormwood, cloves, and diatomaceous earth all kill parasites. Worth looking into. Check out the symptoms of parasites...bowel issues, itching, swelling, anxiety, nausea, urinary issues, joint paint, etc etc. Everyone has parasites and this might contribute or be a direct cause of vulvodynia.

I have been doing this since I saw your post almost a year ago... This takes all of the pain away!! And you're right, only one or two applications and I'm good all day. Thank you for posting this... 😂

I was diagnosed with cytolytic vaginosis after 5 months of burning terrible pain. I began by doing a month of baking soda sitz baths, but after a month with what my doctor saw as normal flora, the cytolytic vaginosis came back. I then began using gelatin capsules from a health food store, filled then with baking soda, and inserted them twice a week. After two months I went back to the doctor and was told again my flora was normal, but to use the capsules and baking soda once a week for maintnance. I ended up at the dermatologist a month later because I still felt burning pain from time to time. The dermatologist told me my skin and vulva looked fine, but told me I either have a estrogen deficiency problem from birth control pills, or vulvodynia.

Well, its been 2 weeks since I've been off the pill and I already notice a decrease in the burning feeling on my tissues, but noticed my vaginal muscles just feel tight. The doctor told me sometimes vulvodynia occurs because of the body having pain for so long, I subliminally tightened my vaginal muscles in anticipation of every day pain. I have been finding this to be true, and have been doing the perenium massage I've read about, inserting a finger vaginally and pressing down on the pelvic floor muscles, it hurt at first, but got better with time, and its only been 4 days. I also plan to visit the physical therapist to see if there are more stretches I can do to loosen my muscles.

I hope this post helps anyone out there suffering from vulvar or vaginal pain that may have similiar problems. I was feeling quite hopeless being in daily pain for 10 months, but am hoping its finally passing. Keep trying new things, try doctors, accupuncture is wonderful, don't give up, it WILL get better.

I never had any burning but my pain has been sharp and raw on the lips. I'm taking Lysine and C-1000 for my symptoms and have forgotten days and paid for it deeply (oops! )

It started last year in November and hasn't gone away since, and with various levels of pain. I've tried several different things for it but only the Lysine has lessened my suffering.

I tried the Amino Acid Nac, Vitamin C and Spirulina and it worked for me. I had gone to my GYN and she had told me that I was deficient in Vitamin C. When I saw this post, I guessed it had something to do with this so I tried it. Thank you so much for sharing. It has changed my life. I was getting it almost every single week or every other week. So painful! Now, if I forget to take the vitamins everyday, as soon as I feel itching, I now its coming. A couple of hours of taking the vitamins, the itching subsides. As long as I take them everyday, I have not had an episode. Thanks a million.

For all those suffering from this painful condition, try this combination. If it doesn't work, you might have a vitamin deficiency. Ask your doctor to perform blood work to see where you are deficient and try taking those vitamins.

Tems, have you had your daughter tested for Lichen Sclerosus?

Also, certain birth control pills will bring it on and a switch to another pill (different progestin, estrogen) helps. Notably the YAZ brand has been causing problems for some young people and it's used for Acne as well as for birth control.

Just some things to check out if you haven't already found a diagnosis or treatment.

I've seen some pretty amazing things happen with energy healing and EFT. There are free EFT videos on youtube to coach you through using EFT for pain (maybe not specifically vulvodina but all the EFT techniques will work the same for pain issues). Should be very helpful.

Hi Tems, sorry to hear about your daughter having this awful problem. One thing I would say about these supplements is they are very liver supportive in helping your liver detox and now days with so many toxins in our environment and food maybe this is the reason it has worked for me and some other women. Also I have read NAC, vit. C and spirulina all have anti inflammatory properties along with turmeric and are also good for helping with supporting liver detoxification. I also limit my exposure to things that come in contact with the skin down there like detergents making sure they are hypoallergenic and fragrance free and I don't use soap down there just warm water also a big one for me is using toilet paper made with out using chlorine bleach so I always take my own toilet paper with me. I wonder if your daughter also has sensitive skin in general as I do and this combo helps my skin look and feel better on my face, which seemed to get more sensitive when all this stuff started for me also I was also very sensitive to chemicals in my environment as my symptoms of not just vulvodynia but sore eyes and throat would flare in places like department stores or around any type of chemical fumes. I would really give it a try as the drugs have a lot of side effects like tiredness and weight gain. Better to try the simple things and least harmful things first before you move on to more desperate measures. Also generally I would try to go organic foods and limit her exposure to toxins in her environment. One very good test I read once on whether someone has vulvodynia or just some kind of infection down there is that vulvodynia sufferers usually have other symptoms going on whereas someone with a difficult infection just has problems in the vulva, vaginal area. Just something to think about. Hope she finds relief soon.

Kathy of Atlanta, that is really great to hear. I know it seems that this combo doesn't help everyone but even just a few who are suffering might get relief it makes me feel good because this is such a terrible condition to be in. Only another women with this condition can really understand what it's really like to suffer this way. By the way, the frequent peeing for me was a big issue also when I had the vulva pain but it went away and nowadays I know when I am getting worse because I start the peeing again and then I make sure I take the combo.

Coconut oil taken internally and inserted everyday into the vagina in large amounts is incredibly soothing and healing to the tissues. I forget about the itch, burn, tightness, dryness and pain during the day with this oil. Thank God!!! Also, it makes you functional during sex. Best lubricant, and it smells good too!!

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:

Hi. I have been doing a TON of research and I think the best things to try are:

find your vaginal PH.. if its low, say 3-4 then this is why the baking soda helps because it raises the PH to what it should be -about 4.5. This made me think its my own secretions that are causing the burn -because they are basically too acidic. So, I am going to try alkaline drops in water to slightly increase my body's PH.

In the meantime, other things that def help are:

Sluice with water or bicarb soda/water after peeing so no pee is left on you.

The chapstick works as a barrier -so I think anything like vaseline or sudocreme would work. This links to me thinking its acidic vag juice that starts the burn! If you put barrier against it, your skin is protected. Just a theory.

For me its always post ovulation it starts, so be prepared for a flare then and start the baking soda wash or baths. I don't douche but thats personal pref.

Also another thread with the acid thesis - I tried pre-seed personal lubricant because its ph 7 or so to be sperm friendly and although it stung a bit at first it really helped a lot.

Estrace cream I dab on a little each day to try and toughen up that skin.

So, wash after peeing, use baking soda & water for this and soak in it every day of needed. Use the preseed and maybe try alkaline drops. I am also trying citracal for anti-oxalate. Finally, one site I saw said that from its data, pelvic floor therapy was the No 1 most effective treatment for this, because often the pain is referred from elsewhere. I have an overly tight pelvis floor so I am booked to see a specialist women's pelvic floor therapist. GOOD LUCK EVERYONE!!

Thank you so much for your post, Alexis! You are the 2nd person I've read through these blogs/forums using dietary changes to heal themselves of this issue. I've been dealing with this for 6 years and I've tried so many things which you stated correctly, only helps with the symptoms. I've also spent thousands of dollars seeing specialists that did not help. It can definitely be depressing and it did affect me greatly when I was in a relationship. I am starting today on the raw/whole foods diet. I've already noticed tremendous benefits by cutting out excessive sugar, dairy, and gluten. Something stood out to me when you said you are not completely healed yet though. I wonder if it has to do with the fact that you are consuming fruit as well. If this truly is a ph imbalance and we need to alkalize our body...I'm guessing we have to eliminate fruits as well until this issue is completely resolved. I read a post from one woman and she mentioned getting rid of all fruits when she went on her detox and she is completely healed from this. Some of our typical favorite fruits are acidic. I wonder if you cut them out for a period of time if that can help you as well.

In any case, thank you again for all the great information. I hope many women will see it and benefit from it.

Thank you for the scientific information and scientists that spend time researching these types of issues. I will share this info with friends. Very helpful.

I have the same symptoms. Randomly started a few months ago. Burning sensation at weird times a day. I've had all the tests done and doctors have no idea what it is. I saw this post yesterday and bought the lip balm straight away. I hope it works. Thank you

This was a very inspiring and brave post. I don't know if you will see it, but I send you love and hugs and pray you found a long term solution.

Look on YOUTUBE for pelvic floor exercises..

Carley Rae taught me it's not called a Pelvic Floor. She has a helpful instagram page dedicated to vaginal health. She taught me there is NO PELVIC FLOOR. It's a bowl. The medical industry was wrong in calling our our body a "floor" when there is nothing floor like about it. This change of mind has helped me understand my body better. I hope it helps you to understand, too.

We all can heal the root of our disease, we just need to take out health into our own hands, research (Thank you Earth Clinic) and be prepared to try and fail until you find a solution. Staying open minded, optimistic, and empowered is key. We have the power to heal entirely, but we must get to the root of the disease. Our bodies are amazing . Look to diet and start by avoiding sugar, gluten, and starch. Edgar Casey and Sally Fallon have brilliant readings

Vitamins in pure powder form with ZERO additives.

NO TABLETS / NO PILLS : , vitamins C - push the limit, some is the same as non- you must cross the threshold for it to have an effect. I take 2,000M G daily and push to consume more. start with 1,000 MG daily

ZINC!!!, and all your B's, Magnesium Citrate, IODINE Lugols (I'm on three drops daily 3x's a week)

Amino Acids

Aluminum FREE sodium bicarbonate drink in water and topical solution

Take Fulvic Minerals

detox the liver with borax

Khristine, Thank you SO MUCH for your posting. I have been going crazy trying to figure out what was going on down there. Even with all the research I've done into BV, Vulvovaginal Candidiasis and pelvic floor muscle tightness, I had never heard of Cytolitic Vaginosis. I know this is what I have because after reading a medical article titled "Cytolitic Vaginosis and Lactobacillosis" on a site for nurse-practitioners-and-physician-assistants, I identify with the fact that the symptoms go away during menstruation and that the skin around the opening of my vagina is irritated by the acidified discharge.

I don't know if the baking soda douches will help, but I will try them, and I will stop taking probiotics until the issue is resolved. I read on another health board that a woman used a pH balanced lubricant every night and treated her CV. You can find it by searching for the postings by mamacitas on a thread titled "Yeast, Lactobacillosis or Cytolytic Vaginosis???"

Anyway, good luck to everyone in their search for an answer. Sometimes I think some of us know more than our doctors - let's keep sharing what we know!

Shannon, I found this information on a pdf online about using baking soda douches for treating CV:

Mix 1-2 tablespoons of baking soda with 4 cups of warm water. A douche bag, which can be purchased at most pharmacies, is then used to infiltrate the vagina with the solution. Or, you can purchase baking soda douches over the counter at most pharmacies. Douche twice weekly for two weeks.

Alternatively, if douching would be difficult, fill empty gelatin capsules with baking soda and insert one capsule intravaginally, twice weekly for two weeks.

My doctor referred me to another ob-gyn group that performed vaginal laser surgery on me last week. I will go back again in 6 weeks and then 6 weeks after that. Then once a year. It is supposed to "cure" it. It is expensive - $ 500 each time but I am desperate and willing to try it. I do feel some relief after the first procedure. Will keep you all posted.

Take caution, as Anti depressants are over prescribed to children, it's a sad epidemic. I am responsible for my own health and refuse to allow pills to be pushed on me. I'm an advocate for finding the root cause, which the pills will never address the root cause. Diet, vitamin supplements, minerals, exercise should be our first line of research.. Avoiding starch, gluten and sugar. Edgar Casey, and Sally Fallon have readings that can help.

Worth a try. (I like the technique where you make a list of every negative thing you can remember and tap thru the list.) For some other condition, for a short while, I was on a low fodmap diet. While my inflammation was low, I noticed how much pain was triggered by being judgmental. I noticed with any thoughts that required judgment I would subtly and unconsciously tense muscles in or near my pelvis. Being "hateful' or just choices between things would trigger pain. Learning to keep those muscles relaxed was my breakthrough. It is now easier to recognize other triggers.

Hello I have just realized I have what I think is vulvodynia.

when I have sexual intercourse it is very painful around the back entrance of my vulva, like nerve endings are burning/

I am loooking for natural cures... homeopathic or ayurveda .

Please give your daughter d-mannose filled up to level with the childrens Tylenol measurement scoop. Fill it up to 10ml mark and 1 capsule of 400mg solaray cranberry 3x a day. My daughter had the same thing she got better with this combo.

I suffered terribly with clitoral pain for 6 weeks being told it was just first a yeast infection, and then just low estrogen due to the fact that I was breastfeeding. It took many trips to the gyn, gastro-enterologist and a sigmoidoscopy (b/c I was also having some rectal symptoms) to finally be referred to the dermatologist who found by swabbing that area that I had group strep A ( like strep throat but genitally). My son had been found to have this rectally maybe 6 weeks ago when my symptoms started. I had mentioned that and they thought I was crazy to suggest it. I was so angered that I was right all this time and all it would have taken was a swab like I asked them to do. I suffered so much pain daily since it's the most sensitive spot of your body that I do believe like you wrote that maybe my now vulvodynia is a result of my body bracing for the daily pain for so long. It's getting better, however, I feel as if I might have just recently set myself back by either a probiotic or a new raw vitamin (with probiotic also in it) that I am taking. I also eat a lot of yogurt. Perhaps I am getting TOO much lactobacilli. I feel really sore around "6 and 8 oclock" but see nothing except morecervical mucus than usual. I'm thinking I'll stop the probiotic and vitamin and see. Please email me if you have any useful feedback.

Hello ladies... It has been a year and I have no longer had any symptoms of vulvadynia. The exercises I did seemed to help. If I ever feel like my vulvadynia might be coming back, I do the exercises again for a few times a day for a week, just to make sure. I have had pain free sex for a whole. What I have noticed though is that when I am taking antibiotics, the symptoms of vulvadynia come somewhat back.. The beginning stages that is. Just keep faith and try whatever you feel is necessary. :)

I think there's probably a lot to this strategy. I've had volvar pain for 1-1/2 years. After going to one ob/gyn after another and spending a fortune, I finally found help. What I'm doing: Seeing a Dr. in NYC who specializes in pelvic floor dysfunction. He's actually in my Empire Blue Cross plan, which is great. For the past 6 weeks I have been using a compounded cream (lidocaine, neurontin and ketoprofin). It burns when it's first applied, but it has SIGNIFICANTLY improved my condition. I'm also seeing a physical therapist who also specializes in pelvic floor dysfunction. She predicts that it will take about 8 visits (and the use of a dilator, ugh) to get me back on track... Having sex again. I know everyone's condition is different, but this is what is working for me. Also, I highly recommend this book: "Healing Painful Sex" by Deborah Coady, MD and Nancy Fish, MSW, MPH. It's very well written and clearly explains the complexities of every related condition. It's also very positive and inspiring.

Hi ladies! I've suffered from vulvodynia off and on for over 5 years. My longest period of it was every day for 11 months. The pain was so bad that I couldn't walk well anymore and even began using crutches. I still get small flare-ups but I now know how to maintain them. I eat healthy (avoid acidic fluids that would be harmful to the vulva such as citrus/coffee), and I clean my underwear with baking soda and white vinegar before washing them in Purex detergent.

But the key to stopping and treating the pain is Colloidal oatmeal! I had some luck with coconut oil, but it never "treated" it fully, at least for me. I buy Aveeno baby bath oatmeal powder. I mix it with a bit of water to form paste then apply it to the red/painful areas of my vulva. Let it sit for about 15 minutes, then soak in a bathtub with the rest of the packet of oatmeal. I apply the past in the morning and night and do the bath at night. In about 3-4 days I'm all healed! I still get flare-ups but atleast it doesn't have to ruin my whole life.

Hi Anna - thank you for taking the time to put all of that in writing! VERY interesting, and informative stuff!

I just realized while reading about your stretches...

since I got my inversion table it has helped a lot! It is basically the same concept. Hanging upside down for 5-10 ins a day has lengthened all of the same muscles. (It is also great for the back, which is why I got it in the first place). If you have the room and the money, I highly recommend it!

Thanks again, that was great info.

Best to you and anyone else who has this affliction!

You're absolutely right, Carley!!! I've always thought inversion (or even hanging from a bar) would help stretch those muscles, too. I'm very glad you confirmed it! I've been wanting to get one of those inversion tables for a very long time: they have many benefits!

Thanks for this Anna. I suffered with vulvodynia, interstitial cystitis and urethral pain for 2 years - at times the pain was so bad I didn't want to get out of bed in the morning. Except that lying down was equally painful to standing up so there was no benefit in not getting up! Then by chance I discovered Amy Stein's book - within 24hrs of doing her exercises most of my pain had gone. I still feel very mild pain but compared to how it was it seems like nothing. Her exercises have to be done 4 times a day and if I miss just one set my pain comes straight back. It's a long process of stretching and healing. However, like you, I'm impatient and I want to see all of my pain disappear so I was thrilled to read your 'invented' stretch and I am going to try it today! I'll let you know how I get on. Thanks so much.

Update: I am still a lot better... i have a little discomfort every now and then maybe for about 20 minutes a day but i am still for the most part pain free... still not getting my hopes up but i can't argue with an obvious improvement... hoping for the best! give your body time... i still don't expect this problem to be completely resolved for a long time... keeping my chin up, and keep yours up too.
GOOD LUCK, you CAN beat this :)

I just read this about coconut oil helping/healing women with vulva issues. I broke down in tears, as I've been going through this for almost a year. I just took some coconut oil internally and will be applying it in my lady parts when I go to bed. Thank you, Lord.

I was diagnosed with both interstitial cystitis and vulvodynia. The doctor I went to only wanted to give drugs for it and I never thought about finding a natural solution until now. My vulva pain is only during attempted intercourse. Just touching the vulva is painful and I can't continue. I will try the castor oil and also try the supplements suggested.

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!

Hi, I too have suffered for that long bit more 4 years, but it doesnt matter, do you get pain all over or just opening? Because mst people have it around the vag opening, but I have it everywhere and it feels terrible like needles stinging all over burning, acheing a lot of discomfort, very desperate, because I feel that I will lose my longterm boyfriend over this, its horrible. I'm very depressed too .I'm 28 too young to not to have a healthy love life.

Laura, can you let me know who you saw as I'm having similar symptoms.

Laura, can you tell me as well who saw you for this.

Laura, I know this is an old post, would you be willing to share the name of the Dr you saw in Houston? Thanks in advance

How was cytolytic vaginosis diagnosed?

I had terrible sensitivity for about six months, redness and rash. Two things worked: Check that your washing powder is non biological. Also use coldish water hand spray and it literally gets rid of the sting and redness.

Yes, this really helps me when things are bad. It also helps the urinary frequency feeling which vulvodynia gives ones.

Hi. What brand is the chapstick? Thank you

That's no ordinary Chapstick or lip balm, Since the lady mentioned beeswax, I'm pretty sure that has to be a "Burts Bees" product!

What are the herbal adrenal support hormones you have tried?

Burt's bees is what I started out using and when I ran out I made my own. It seems to work the same. This was the recipe I used: http://www.brokeandhealthy.com/diy-burts-bees-style-lip-balm-8?-per-tube

Thank you.

I also have Amy Stein's book and it is very interesting covering not just womens issues but pelvic issues for children to old people. My PT said it might help me, but it wasn't my answer but did help me understand why one of my children had disconnect with bladder and bowel and was also muscular and tightly wound. Patience is so important with our fellow humans and their sufferrings. Thank you for your story. May all your outcomes be GOOD ones. Love, Joy

Thank you so much for posting and sharing your experiences and hopeful outlook!

Hello, my name is Myra and I really appreciate your article about using a baking soda douche. I've done it quite a few times and was amazed at how good I felt afterwards. My question to you is how often should I douche? I would do it everyday if I was sure I wouldn't be causing myself more harm. Thank you in advance.

I am looking for a specialist for painful sex not sure which of the conditions I have maybe a combo of a few but was wondering what specialist you where refer. to and how it worked for you.

Since you are in PA it might be possible for you to go to NYC, I have a strong recommendation to go to Renew Physical Therapy for painful sex. Also you can get the book "Ending Female Pain" by Isa Herrera (available on Amazon). You may have a PT in your area also who focuses on painful sex and women's health issues, you could ask your doctor. This is probably just one part of the puzzle that you are dealing with, but for me it was a big part! Hope this is helpful.

I saw you are looking for a specialist for painful sex. Dr. Kellogg Spadt is the doctor I use. She is located near Villanova University.

Hi, I have a subset of vulvodynia and I am desperate to be healed. I was wondering if the pain and burning you experienced was constant and interferred with your daily activities? Or did you only have pain with sex? Thanks!

So you just take all three at once. Do you take it before or meal or with a meal or just when you have pain?

SandrafromHouston, I take it on an empty stomach and besides the vulvodynia I think it also generally makes me feel better.

Bluesky, I think it's really wonderful to hear it worked for you I know two other's on the other forum I used to post on, said it worked for them also. I think many don't try it because they think its a weird combo. I dont' think it's a total cure but I think at least it seems to stop the itching and then burning and like you said if your starting to feel bad it seems to work pretty quickly. That's interesting what your doctor told you about vitamin C I will look into that. Like I said I was given it for getting rid of heavy metals so remember to take a good multi mineral while you're on it. Again, I think it's so wonderful to hear that it helps as I know this condition is hell, take care, Anna

Hi All, I've suffered with Interstitial Cystitis for 20 years, and now the past few years with Vuvodynia and Vulvar Vestibulitis. The burning and rawness is horrible. Doctors have tried everything for a few years now. I have done EVERYTHING!!!!!! IC has been controlled with Botox injections to the Pelvic Floor Muscles, so that is tolerable. But I am on a constant no acid diet, no oxalates, so I'm wondering about the high Vitamin C content in your pills up above. I never, ever eat anything with Vitamin C and haven't for years as it aggravates my bladder and IC. Does anyone have that problem???

SFnative you can always just give the combo a try and see how it goes. If you have a lot of increased bladder pain then certainly stop. I know that last year I had a bladder infection and even after it was gone I still had an uncomfortable irritation that felt like it was still there and so took another round of antibiotics but the pain stayed so then I decided to start up the combo and it took it away. I know sometimes the vulvodynia can cause irritation around the urethra and make you "feel" like you have to constanly pee but it's just irritation so not sure if mine was really an IC type situation. You could also try buffered vitamin C as that is less acidic on the system. I know that some berries make my vulvodynia worse but the combo has never bothered me.

Anna from Seattle, Washington, Usa... hello, can you please tell me if you took this combo of NAC 600mg, vitamin C 2000 mg and 3 capsules of Spirulin all at once or did you take it fractioned during the day (like 600 mg vitamin C in the morning and 1 capsule of spirulin and the same at lunch and in the evening, NAC is only 600 mg capsule so that can't be fractioned..) Thanks!

Hi, Hellen from Romania. I take the combo all at once. The NAC 600mgs with vitamin C 2,000mgs and three sprulina tablets all together and on an empty stomach. I also take a multi mineral at a different time of the day as the NAC is good at getting rid of heavy metals like mercury and lead but it can also take zinc and copper out of the body over time... So you need to replace that. Take care, hope this helps, Anna from Seattle.

I have been taking this combo almost everyday for two weeks and have not had any improvement. I know this blog (thanks to Anna for all the information) says this should help within hours, but I wondered if it could take longer the first time. It's starting to feel like the same old exercise in futility. I'm glad this combo is working for some of us with this problem, anyway. I'm considering the amitriptyline/nortriptyline route, which I've been avoiding for years.

My 12 year old daughter has vulvodynia it's unbearably to watch her in so much pain. The Dr's have been useless and she has missed 4 weeks of school. I diagnosed her myself online as all the tests came back negative. Today she got prescribed antidepressants but they take time to work and school starts next week do I will see my pharmacist about these vitamin combo's for girls her age. Any advice would be appreciated.

Take caution, as Anti depressants are over prescribed to children, it's a sad epidemic. I am responsible for my own health and refuse to allow pills to be pushed on me. I'm an advocate for finding the root cause, which the pills will never address the root cause. Diet, vitamin supplements, minerals, exercise should be our first line of research.. Avoiding starch, gluten and sugar. Edgar Casey, and Sally Fallon have readings that can help.

I would look into Perrin's Creme Complete for possible topical relief. There is a Yahoo Low Oxalate Group online with very knowledgeable people and researchers who can help you with a low oxalate diet that has proven to be very beneficial for relief. They have links to a Vulvadynia Society that has specific supplements and protocols for dealing with this problem. I hope she can find some relief soon.

My 29 year old daughter is the one who is suffering from vulvodynia and has seen a number of doctors over the past year and a specialist in vulvodynia who has prescribed a diazepam and gabapentin compounded cream which really hasn't been working. She just recently started seeing a pelvic floor therapist weekly where she is having my daughter use a dilator every night to help stretch the area plus the weekly therapy sessions. I came across your blog and purchased the combo. Not sure if the spirulina I purchased is a quality product because I bought it at Walmart which is the Spring Valley brand. I started her gradually with the NAC and 1000 mg vitamin C and she is also taking B-complex because she has a lot of sensitivities and I want to make sure she can tolerate the pills. I am concerned about stomach upset and diarrhea with the Vitamin C so I will have her gradually increase the vitamin C to 2000 mg then add the spirulina to the mix. I am curious she has been taking a multi vitamin so can she continue with that for the multi mineral or should be taking something completely different then the multi vitamin. She hates taking pills so this needs to be gradual steps vs all at once. I am hoping even with the NAC and part of the Vitamin C she will show some improvement so she will be more open to taking the pills. Crossing by fingers for that to occur. I am curious to your thoughts on this.

Anna thanks for your reply and could you tell me how long you stayed on the combo? I have been on it for 3 weeks or more now and did not know how long to continue doing it. Also about how long did it take you go stop frequent peeing, as I am still doing lots of that and it keeps me up at night alot and breaking up my sleep. Thanks again.

Thanks for your comment Breza and the cherry did not help but I still have burning that came back recenty and constant going to the bathroom day and night. I recently got on baking soda and that has helped the burning a good bit but not the bathroom runs day and night, but still trying to find what to do for that. My PH has been checked and that is very good at this time. Thanks for your help. Kathy

How long did you have to take this before you noticed a difference? I have been taking for 2 months now and have not noticed any relief..

I had begun having severe pain in my clitoris lately which was making me feel horrifically depressed and irritated beyond belief. I did some internet research and figured that I might have some form of Vulvodynia. I've had long standing health issues with my body, but this is just aggravating to deal with. I've been drinking apple cider vinegar as I have systemic candida, which might be causing the clitoral pain. But I did a borax douche in the shower this morning and it was incredibly soothing. I had done a vinegar douche a few days ago and it aggravated everything; ugh, just a mistake. I think the borax helps so much because the pH is so high that it kills whatever is in the area causing pain. It also helped soothe my bladder which has also felt mildly irrirated for the last week or so also. Nothing is itchy, just mostly pain.

So I'll see how it goes. The borax is mostly a quick fix for severe irritation and burning. I'm going to try with the coconut oil to see if that helps for a more long term solution. Thanks so much for all the feedback here! I love this site :).

Not sure this will help you and you probably already know this but:

wear cotton or NO underwear
when you wash use your fingertips and not a wash cloth
perhaps swab with a diluted betadyn solution once or twice a day to keep infection down

I used to get many vag infections and I know this is diff than the staff you get but douching with yogurt helped

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.

I too have been suffering from external burning for several months.... It comes and goes. It seems to come and worsen from wearing tight pants, sitting prolonged periods, riding bikes, walking for long periods of time. I have herpes simplix 1 and I only know that because I have been tested for everything and this came up. I have never had one cold sore on mouth or outbreak anywhere else. Wondering why your drs think that this could be caused by herpes. Im only asking bc it happens so frequently and typically with herpes it rarely shows symptoms if any. Did they do a biopsy to know this or just guessing? I am dying to know bc I am wondering of I should have a biopsy done, or can this no way be from herpes?? Do you have frequent outbreaks when these problems occur so your dr is associating with this?

Not coconut oil or anything natural, but botox injections into the muscles works to relax the muscles and in many patients cure them completely. I just had a 2nd round of botox after 3 months (needed more) and at this point things are feeling pretty soft inside, no knots like before in the muscles. I still have the vestibule inflammation, but I'm hoping this will subside with time. Botox is the only thing that has made a difference for me so far, and I am organic/natural - but it is actually pretty safe and worth it for this horrible condition! I see a great dr in New York.

I also have vulvodynia and that pain is not permanent but its really sharp pain plz suggest me something n tell me how to use coconut oil

Not coconut oil! Use organic castor oil, it's a way better oil for the vaginal area. Something about coconut is cold and drying where castor oil is warm and truly healing. Research. Happy I was told a few months ago, as I was a vitamin E, coconut oil person, but the switch is smart.

It may be a type of infection.... BUT I'm telling you, the perenium massage works! I only itch like once every 4-5 days and for like 5 min, if that! Also, to cure the itch, I bought the Aveeno Colloidal Oatmeal and make a small amount of paste with it and apply it to the area for like 20 minutes then wash it off. That helps. Also, when I shower, I use Johnson and Johnson Baby wash for down there.. My doctor said "If you can put it in your eye, you can put it in your.... " So it is very gentle on the area. As far as the burning goes, I havent had much lately, except when I wear extremely tight jeans and sit down. The crotch gets a little restricting and I hurt a little bit. Trust me, I am trying WHATEVER I can to cure this! I am 28.. WAY too young to have to worry about sex or lack there of. LOL.... But again, relaxing helps too :)

Gianna, thanks for your post! You have given me hope. I was diagnosed with vulvodynia after a year of hell which started with a bladder infection in February 2012. It took about 10 doctors, eight trips to emerg and countless tests for me to find the right doctor to diagnose it, so much so that it was actually a relief when someone a) proved it was not only in my head but b) it wasn't anything life threatening. I already have a number of other health conditions, so I didn't need another serious one.

For me, just the peace of mind knowing what it was has helped me to heal a little bit, but I'm only about 50% better from before the bladder infection. (I also may have IC, being tested in another two weeks)... I've started going to therapy but it costs an absolute FORTUNE and I only work three days a week right now, so I can't really afford it. To know that you can do this stuff on your own, without having to pay thousands of dollars, is giving me a lot of hope!

About three weeks ago, I was in Jamaica, and I found swimming in the ocean worked wonders for the vulvodynia. I was in almost NO pain the whole week we were away, the first time I'd had near total relief in a year! There's no ocean in Toronto, but my boyfriend bought me some bath salts that he read were recommended for women with vulvodynia. I'm going to give that a try.

You might like to try using some ACV in your bath - I found this very helpful when I had my first (and only hopefully) attack of vulvodynia last year, following (my first) urinary tract infection. You might also check out your pH levels and make sure they are balanced.

Sounds like the Walcher's position: http://spinningbabies.com/learn-more/techniques/other-techniques/walchers-open-the-brim/

Is it so? I usually recommend my clients to do it on the edge of the arm of the sofa...

I have had this pain for over 20 years, undiagnosed (dismissed as "in my head" and "you need to relax") until this past year. A new doctor I was trying finally told me, "this looks like lichen sclerosis." Check it out! There are some very good private groups on facebook where people with LS (autoimmune) (vulvar pain, itching, burning, etc) discuss things that help. I highly suggest everyone who suspects vulvodynia just at least google LS. I feel your pain.

Anna from Las Vegas, thanks so much for your wonderful advice regarding the reverse lumbar stretch!! I should have thought of it sooner because that's how I fixed my problem with severe sciatica and later the soles of my feet so of course it made total sense and as soon as I tried it it worked!! I just can't believe it could be that easy and I pray that this is my solution (after 3 years of suffering n self medicating) and I extend my sincere thanks from Southern California God bless you dear!!

Anna,, I have not been officially diagnosed with Vulvyndonia. But I have been to the gyno 4 times and every time there has been nothing on the cultures. I don't have much confidence and doctors so I'm going to give your method to try. I did the stretch on the bed this morning and I already felt some relief. I have been having pelvic pain and tightness first over a two month And the burning pain has been for 1 month. I just wanted to reach out to you to see how you are doing and thank you for posting your method!!

Hi. I was wondering if you had burning in the Vulva too. Mine is on one side and is swollen now. I am having small spasms in the front where the pain is. Everytime I pee, the burning gets worse!!

Julie, I'm so glad you found relief and figured it out too!! That's fantastic! Coconut oil is awesome, and I wanted to pass on, that coconut oil is also good for personal itch issues. Mom had a stroke and I was her caregiver...I'd mix up borax mixed in with dr bronners soap and warm water to wash her privates, then gave her a bit of coconut oil to rub on, and she just loved it! It is a mild antimicrobial as well as being good to ingest and good to cook with too!

Hello my 12 year old daughter has vulvodynia and was prescribed antidepressants today but those take weeks to work. Do you drink the coconut oil or apply it to the affected area. I am desperate to help her. I took the vulvodynia diagnosis to the Dr myself as they have left my poor girl in pain for nearly 2 months making things worse with double strength antibiotics. Any advice would be appreciated on pain relief.

Tems