Table of Contents
- QUESTIONS & ANSWERS
- Amino Acid Nac, Vitamin C, Spirulina
- Baking Soda Douche
- Baking Soda, Perineal Massage
- Borax Douche
- Calcium Citrate
- Coconut Oil
- Colloidal Oatmeal
- Herpes Caused
- Holistic Healing
- Magnesium Citrate
- Multiple Remedies
- Pelvic Floor Muscle Stretch
- Pelvic Floor Muscle Stretches, Multiple Remedies
- Peppermint Lip Balm
- Remedies Needed
- Vulvodynia and Allergy Connection
"Vulvodynia... refers to pain of the vulva unexplained by vulvar or vaginal infection or skin disease. Pain commonly includes a stinging or burning of the vaginal area. The pain may be constant or may flare-up intermittently. Vulvodynia can have a negative impact on a woman's physical life, interfering with such activities as sitting, inserting a tampon, riding a bike, or having sexual intercourse. It can also interfere with a woman's emotional well-being, at times leading to depression.
"The pain may be localized to the vulvar region. Localized vulvodynia in the vestibular region (the entry point into the vagina) is referred to as vulvar vestibulitis or vestibulodynia. It often causes dyspareunia, or pain with sexual intercourse (though dyspareunia also affects men). The pain of vulvodynia may extend into the clitoris; this is referred to as clitorodynia."
Amino Acid Nac, Vitamin C, Spirulina
[YEA] 12/25/2012: Anna from Seattle, Washington U.s.a: "After suffering for 20 years from vulvodynia and going to so many doctors and spending tons of money on both conventional and alternative treatments and going insane from finding absoluely NOTHING to take away the burning pain and rawness until I accidentally found that taking something that another alternative M. D recommended for something totally different (amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina) once a day or even every two days, takes away the pain within hours. So happy about it and want to spread the word to others. Been doing this now for two years and would also suggest that when taking NAC also take a good multi mineral with a meal as NAC is a good chelator of heavy metals like mercury but can also deplete the good minerals like zinc and copper. Hope this helps others as I know this type of pain is so horrible."Replies
02/27/2013: Epretty from Charlotte, Nc replies: "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!"
03/23/2013: Anna from Seattle, Wa replies: "Epretty my vulvodynia started with just pain during sex but then later changed to constant unprovoked pain. After trying many things over many years, the one thing that suddenly stopped the constant pain was this combo."
04/19/2013: Sandra from Houston, Tx replies: "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?"
[YEA] 05/23/2013: Bluesky from Orlando, Florida replies: "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."
06/02/2013: Anna from Seattle, Washington, Usa replies: "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"
06/15/2013: Diana from Hartford, Ct replies: "Hi all! I'm so glad I found this information and earlier today I ran to the vitamin shop to get these supplements! I just have a few questions... 2,000 mg of Vitamin C is alot and I hear that it is borderline unsafe to take that much at once (don't know how true that is), so will it work if I take less or does it have to be 2,000mg? Also have any of you noticed side effects from the supplements? I am already taking amitriptyline for vulvodynia. Strangely I have never experienced pain related to vulvodynia, just VERY ANNOYING constant itching. Thank you all in advance for sharing :)"
06/16/2013: Nanowriter from Hot Spot, Tx replies: "Diana, vit C is considered to be quite safe. It is water soluable and the most likely "side effect" you will get from taking too much at once is diarrhea. It is also not good to leave it on your teeth if you are using the powdered vit C because of enamel damage. I take over 2000 mg a day without any problems. Splitting the dose and taking it at intervals throughout the day is supposed to be better than all at once."
06/16/2013: Diana from Hartford, Ct replies: "Thank you so much! I think I will try 2 100mgs once at breakfast and once at dinner. I really appreciate all the support from everyone and I will update on how the combo works for me :)"
06/20/2013: Sfnative from San Francisco, California replies: "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???"
07/02/2013: Anna from Seattle, Washington, Usa replies: "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."
08/13/2013: Hellen from Romania replies: "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!"
08/19/2013: Anna from Washington, Usa replies: "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."
10/18/2013: Leigh from Washington replies: "Hi, I found this yesterday and rushed out to buy NAC, Vit C, and Spirulina. Can't tell a difference yet (taken it twice). Can anyone comment on how long it took to work for them? I have had provoked (only when touched) burning/searing pain for years. Thanks!"
[NAY] 10/28/2013: Leigh from Washington replies: "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."
Baking Soda Douche
[YEA] 12/29/2012: Khristine from Berlin, Nh, Usa: "My Friends in Womanhood, I would like to broach a subject that is affecting our lives and our medical professionals are missing the boat! I work as a medical professional and have had an experience over the last 6 months that I would likely compare to burning in "hell" with alternating itching/raw feeling. It all began in July when I began to feel a bit like I might have a yeast infection brewing. Within a weeks time or so after this feeling I began noticing that it burned when I urinated. Burning after I urinated as well. My vulvar area became inflammed reddened/raw in no time. However, what I was feeling was burning, unable to appreciate for obvious anatomical reason that I was in fact raw. I called my physician whom was unable to see me of course! Frustrated I spoke to a coworker whom indicated that quite possibly I could be having the start of a UTI. I rarely if ever have had a UTI and quite honestly I feel that unless they can prove you have one via a urine sample do not, I repeat do not, agree to take an Antibiotic. It will do more harm than good. I promise. After a course of Bactrum( a common UTI Med) I began to feel better within roughly 3 days. I thought... Wonderful.
However, little was I to know that I was only beginning a hell ride that would continue for months and ultimately end with me researching and finding my own resolve for this matter. Not the Physicians, 6 of whom I would end up seeing for this. Following the course of Bactrum I went back to my normal routines. I had intercourse with my husband one evening and when I woke up to urinate in the middle of the night I had burning and stinging unlike ever before. I thought to myself I must be dreaming. I was better. I had such intense burning I had difficulty falling back to sleep. I called the clinic the next day, still unable to see a physician. So I spoke to the nurse of a Doc I work with and she called and said that they would prescribe a course of Cipro for my stubborn UTI, however, I was to provide a urine sample to the lab. Lab was neg. I began the Cipro and within 2 days experienced severe itching and was given Diflucan to treat. The itching resolved, however, this awful burning feeling that I had, had not. Frustrated again I made an appointment to see a Nurse Practioner. She examined me and tested for everything under the sun. Yeast, Bacteria, STDs, etc. With no hard proof of anything to me she would give me a course of Doxycyclin. Desperate for healing I went ahead and took the script. My burning intensified to the point where I could cry. Ice was not enough to cool. I felt as if heat were eminating for my vaginal area that could burn a hole in a glacier. Later I was given Metrogel vaginal gel for what was thought to be a case of BV. Clue cells were identified in a wet prep so they said, however, the vaginal gel added insult to injury. No odor/ no unsual discharge noted. I tried every natural substance I could find to calm my horrified bottom. Raw Honey, olive oil, cornstarch and baking soda powder, vit E oil, Petroleum Jelly, KY Jelly, Desitin, Vit A oil, plain yohurt(which cooled me)... I tried it all. Also tried, Clotrimozole/betamethasone ointment, clebasol, hydrocortisone, allergy ointment, Nystatin, Monistat yeast Med... To no avail. In fact it made me worse.
Months later and still battling I see my GYN for the 3rd time. She says "I'm sorry dear you have Vulvodynia. " In my research I had seen this term & had thought that this is the Fibromyalgia of the vaginal world. A term used to label unsolved mysteries. Angered.. I did more homework. Antibiotics upset vaginal Flora & PH. Antifungals also change vaginal PH, making the area acidic. Birth Control can also influence PH. Vulvodynia symptoms clearly parallel the symptoms of Cytolytic Vaginosis. A very CURABLE problem. Practioners forget to look at the very tool that got them into medicine... CHEMISTRY. When you make an environment normally slightly acidic extremely acidic two things occur, irritation of skin, and burn like symptoms(ACID).
The Vagina is a delicately balanced Microcosum of bacteria/yeast/lactobaccilli/ and numerous others microbes. When antibiotics are presented, they wipe out an already unbalanced(in my case) world. Antifungals to prevent/correct the yeast symptoms also make the vagina very acidic still. Ultimately you have a petrie dish of disorder in a very big way. I suggest all of you think about your starting symptoms and look closely at what may have precipitated them. Antibiotics for no matter what will start the ball rolling. Cytolytic Vaginosis is basically a Chemistry lesson that our providers are just overlooking.. And for what reason I am not certain. It is extremely basic. And the cure is Baking Soda douche. 1-2tablespoons/4 cups of warm water. , bathing in a Sitz of Baking soda water is also very helpful for the external symptoms of itch and burning until symtoms resolve.. And they will.
Please all of you look up CYTOLYTIC VAGINOSIS. The symptoms, of burning, and itching, rawness do not just occur by themselves. They have been precipitated by something. They can be balanced and harmony can once again occur. Demand that your practioner do a vaginal PH. CYTOLYTIC VAGINOSIS will be in the 3.5-4.5 range. Certain Cytologic indications will also be evident on the wet prep slide. Lactobacillis will be plentiful. I encourage you to fully trust your instincts, your body is an amazing creation and the answers lie in sometimes the most basic fundamentals. Good Luck to you. I wanted to share my experience to help others prevent the nightmare the Medical Professionals whom we all go to in times of need, can create.
God Bless, Khristine"Replies
02/21/2013: Shannon from Brownsburg, Indiana, United States replies: "I was recently diagnosed with Vulvodynia. My question regarding the baking soda douche is: how often should this be done? Thank you."
06/08/2013: Sandra from Los Angeles, Ca replies: "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!"
06/08/2013: Sandra from Los Angeles, Ca replies: "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."
Baking Soda, Perineal Massage
[YEA] 03/12/2013: Palmtrees from Midwest, Usa: "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 massageÂ 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."
[BETTER BUT NOT CURED] 09/17/2012: Stacey from Abbotsford, Bc, Canada: "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 :)."Replies
03/02/2013: Mauve from Houston, Tx replies: "Can I have the measurements for this douche, please. Thanks"
12/06/2013: Colleen from Pa replies: "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."
12/06/2013: Jillery from North America replies: "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"
[YEA] 09/19/2013: Linda from Tx - Texas: "For Vulvodynia, I tried everything mentioned on this site and nothing helped then I read Effective Treatments By Clive Solomons, Ph. D. and yesterday I started taking calcium citrate, two twice a day and in less then 24 hours my pain went from a 10 down to a 5."
[YEA] 04/21/2010: Julie from San Diego, California, United States: "This post will be a little long just because I have a lot to explain. The disease vulvodynia has affected me for about 2 years, ever since I was 16. I have gone through many ups and downs with this disease, my psychological health was extremely affected. All tests came up as negative with my doctors, and I did so much research and would only end up in tears or have a panic attack because of the overwhelming amount of women who have not found a cure for this awful problem-- all the suffering and the idea of this 'death sentence' drove me closer and closer to insanity. Doctors and even my own mother thought it was all in my head. Wrong. I have always been into natural cures, and was disappointed again to see the lack of hope for a cure on Earth Clinic (Not Earth Clinic's fault!). By chance I just happened to be looking at the coconut oil section and saw that one woman was able to cure her chronic, 21 yr old struggle with an 'incurable' bladder condition by ingesting coconut oil. A light bulb went off in my head. Well, this condition, I assumed, was what many women suffer from called interstitial cystitis (IC) that is extremely similar to vulvodynia, only it affects the bladder not the vagina. So between these two conditions, you are walking around feeling like you have a bladder or yeast infection, but the results come up negative so any infection is generally ruled out leaving the symptoms to remain with no end in sight. That's the connection I saw between the two. Some women have both IC and vulvodynia... I can't even imagine. There ARE women who have cured interstitial cystitis on Earth Clinic. The majority of them seem to think there is an undetectable infection and anti fungal/bacterial measures helped their situation. I caught on and thought well, it couldn't hurt to try some of these remedies just in case I myself have an undetectable infection. So I've been ingesting coconut oil everyday for about two weeks... at least 1 tsp a day. Sometimes I go all the way up to 2 tbsps it really varies... I tried not to get my hopes up but guess what-- this is the first time I've been pain free in 2 years. I'm reeeeally gonna try and not get too excited as things could change but for these two weeks I've been fine... coincidence? I hope not. I will definitely update! Ladies, your health is in your own hands. Remain optimistic and be creative. I took a cure I saw helped one woman for a completely different but curiously similar disease, and I think it's helped me. Don't give up! I'm only 18 and too young to have to suffer from this. Please, please do not settle to be a prisoner in your own body."Replies
04/21/2010: Lisa from Thousand Oaks, Ca, Usa replies: "Hi Julie,
I would also suggest you start drinking young coconut kefir. Since you are in San Diego, you will have access to excellent health food stores where you can find it in the refrigerated section. It's a bit pricey but you can extend it by buying either young coconuts or fresh young coconut water. Buy one of the coconut kefirs, put the coconut water in a glass container and add 1/4 cup of the kefir and it will turn the coconut water into kefir. This will help your body to re-colonize with the beneficial yeasts thereby overtaking the "bad" yeasts and help the body find its balance again.
If you want specifics on products or help about this you could ask EC for my email address and I can send the info to you directly.
I'm glad you're pro-active in your body's health. Good for you!
04/21/2010: Julie from San Diego, California replies: "EC, could I have Lisa's e-mail? She provided some helpful information and I am interested in learning more... thank you so much"
EC: Hi Julie,
Yes, but please send me a private post (or email me: firstname.lastname@example.org) with your email address and I will send out an introduction to you both. We cannot publish Lisa's email address on the web site!
05/05/2010: Agnes from Lake Orion, Michigan replies: "This is a question for Julie. I am also suffering from Vulvodynia since a catheter was placed in my urethra for a test. I am pregnant 14 weeks and I have a lot of pain. Your post gave me hope, so I wanted to know if you're still in remission. Thanks. Agnes"
05/12/2010: Julie from San Diego, California replies: "hi agnes, i actually had a similar experience with one of my doctors after i already had vulvodynia, he stuck a catheter in me without my permission and dismissed my problem... that was the last visit i ever had to a doctor for this issue. and to answer your question, YES, 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. if you want, you can e-mail me...
GOOD LUCK, you CAN beat this :)"
05/12/2010: Lisa from Thousand Oaks, Ca, Usa replies: "Hi Julie,
Did you ever look into young coconut kefir? I am certain it will help you eradicate your issue. You can make your own. I am certain there is a Whole Foods that is accessible to you where you can find what you need. Glad to hear you are seeing some improvement but it would be even better to have all symptoms completely gone! Take care, Lisa"
07/03/2010: Julie from San Diego, California replies: "just wanted to update.. haven't taken coconut oil in a while but the pain/itching has pretty much stayed at bay.. have a few uncomfortable minutes during the day but nothing more! going to look into vitamin deficiencies"
[YEA] 02/03/2011: Kylie from Los Angeles, Ca replies: "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."
01/26/2012: Shampoo from Los Angeles, Ca replies: "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!!"
02/08/2012: Pippa from Westport, Ct replies: "Hi Julie, I've gone through a similar thing and would really like to hear more about your progress since you wrote that post. I'm 18 now and have been suffering on and off since about the 8th grade. Usually it will only get bad for a few weeks or months at a time and then subside randomly, but I've been in constant pain for about a year now and really desperate for anything to help. Please email me at Pippa. Hazlewod(at)gmail.com.
02/26/2012: Moon from New York, Ny replies: "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."
05/18/2012: Gina from New York, Ny replies: "Hi moon, which dr(name) do u see in NY for botox injections?"
07/10/2012: Shinygirl from Toronto, Ontario, Canada replies: "Hi Moon, are botox injections painful? I am asking because of the pain there I am not able to get even a pap test done. Dont know if I will be able to take these injections. Thanks"
07/17/2012: Nathalie from Calgary, Alberta, Canada replies: "Hey Julie, I have read your posts and find them very encouraging as I am feeling very lost with this whole condition.... could you email me? ndechka(at)shaw.ca"
09/19/2012: Westlaker from Cazenovia, Ny replies: "Hi Moon, Can you let me know the doc you see in NY? Thank you."
11/09/2012: Mindyhoho from Manlius, Ny, Usa replies: "I am also from the Cazenovia area, Westlaker. Has anyone tried evening primrose oil? Mindy"
03/24/2013: Sally from London, United Kingdom replies: "Hi Julie, thanks for the advice. This is all just getting to me so much, it's getting between my relationship and everytime I try and have sex I just burst in to tears because the internal burn is so bad. Did the oil help the internal burn or just help the vulval itch? Also did you drink the coconut oil or insert it in to the vagina like another person suggested?"
07/22/2013: Brittney from Woonsocket replies: "Hi, are you still 100 percent cured? I been dealing with this issue since I was 15. I'm now 21 and no one knows what is wrong with me."
06/06/2011: Ana Mua from Tamuning, Gu: "There is a cure on the Vulvodynia page that didn't get categorized in the menu bar. (Colloidial oatmeal. ) Wouldn't want it to be overlooked! Thanks for everything, EC team!"
03/07/2012: Meg from Columbus, Oh, Usa: "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."Replies
06/21/2012: Hopeful from Columbus, Oh replies: "Hi Meg. I too am from Columbus and am having the same exact problem. Itching and burning (caused by the same reason :( ) The itch is really provoked when that certain area is touched either when washing or wiping after going to BR. So, I feel that the nerves are in overdrive. I also tear very easily. I have been seeing my gyn and she always seems puzzled. She told me at first that this could be caused by H. Then she says that that would not cause constant itch and burn. So, without even checking, she put me on a strong regimen of diflucan cause it "seems like yeast" (even tho no discharge) then said I am heading for biopsy if that doesn't work. Anyways if you could give me the name of the person treating you here that would be so wonderful. I have searched all over the internet for someone who specializes in vulvar problems local and I got nothing. And on the internet I am reading alot that most doctors are clueless about vulvodynia and that damage of the nerves. Soooo frustrating! I also give EC permission to give you my email if you would like to get a hold of me. Thank you so much and I hope you are still on the road to recovery :) hope I will be soon...."
08/01/2012: Sydney from Cinci, Ohio replies: "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?"
10/24/2012: Elodieluna from Sydney: "Lets get something straight. Vulval vestibulitis is not a disease. It is a symptom, not a cause. It is a pain syndrome which can have a multitude of different causes, such as candida, or even eczema as underlying triggers. Try to find the underlying cause for your vulvar pain. Try and avoid accepting prescription medications such as antidepressants to treat the problem. Like with most things in western medicine, it isn't very interested in healing the body, only masking the underlying cause with nasty chemicals which will eventually lead to secondary health problems. We all know this. A very interesting article I would recommend is one from the journal of pain management on holistic methods for addressing womens gyno pain. It will change the way you look at things. We seem to forget that everything has an emotional basis. The body and mind are not seperate. Its called the mental-emotional body for a reason. Heal the emotional trauma that gave rise to your physical illness and you have truly healed. Namaste.
[YEA] 09/02/2012: Cathy from Ireland: "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"Replies
12/02/2012: Earth200749 from Durham, NC replies: "How much magnesium are you taking? I just started taking it because I read that it will feed the muscles with oxygen."
01/24/2012: Gianna from San Diego, Ca: "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."Replies
01/26/2012: Shampoo from Los Angeles, Ca replies: "Girl, I feel you!!!! Everything you described is exactly what I was going through too but I know one thing is for certain::: What we have is some kind of infection!! I promise. This is either yeast, or bacteria. Because, I have had brief periods, where I can cure it with herbs and oils, and sex feels 100% normal again."
01/27/2012: Gianna from San Diego, Ca replies: "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 :)"
04/23/2012: Amai from San Sebastian, Spain replies: "Hi there did you improve more since last post with the vaginal exersices you mentioned?..... would be great if you keep posting here your path to recovery so we can make a follow up and give us the steps do to so...Thank you"
07/17/2012: Nathalie from Calgary, Alberta, Canada replies: "Gianna, thank you! Reading your post was very refreshing for me.... I feel there is hope. I am interested to know how your symptoms are now that a few months have passed since that post. I understand that this may not work for everyone, but I will give it a try and hope I have the same results.... Thank you again.... If you could message me how you are doing that would be greatly appreciated. ndechka(at)shaw.ca"
12/28/2012: Gianna from San Diego, Ca replies: "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. :)"
12/28/2012: Gianna from San Diego, Ca replies: "Another thing I noticed that causes symptoms of vulvodynia are after prolonged "forcing" of orgasaming. That seems to irritate the muscles "down there" which can cause vulvodynia. So I do exercises after I orgasm just I'm case."
02/19/2013: Torontolady from Toronto, Ontario, Canada replies: "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."
02/19/2013: Torontolady from Toronto, Ontario, Canada replies: "Gianna, is there any way I can get in touch with you? I'd love to touch base with someone who is dealing with this as well! I'm so on my own right now... :-("
02/21/2013: Carole from Bury Village, West Sussex,, England replies: "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."
04/16/2013: Tinlizzie from New York, Ny replies: "I thank God for this site! What a find! "Multiple remedies" is right -- remember that our bodies are systems, and this dividing of our symptoms into distinct "diseases" has no relation to reality. (Is it fungal or bacterial? Is it vaginitis or vulvodynia? Who cares! ) It doesn't fit WOMEN'S reality; it's male dominated and just as dumb as a guy trying to figure us out mentally.
I know this and have studied it for years as an independent journalist. Now I've taken up with a smart, warm-hearted man, a cell biologist -- only to find this problem flaring up again. I don't have to worry about a cell biologist passing me a disease or getting embarrassed hearing about my problem. I haven't shared it all with him yet, but it doesn't matter. I'm going to beat it in a few days, I am certain, and tell him about it as we explore further. One good thing is that it's a long-distance relationship at this point. It gives us some time to analyze this and also figure out how to handle middle age.
One thing he told me a couple of nights ago on the phone was that I probably had bacterial and fungal problems, given my history (which I have shared). And he gave the most informed answer I have yet heard: Just alkalize!
I look at all these "multiple remedies" on different threads and realize they all have something to do with suspected "infections" -- but if we focus on the bugs and not the environment, we're not getting anywhere. Again, who cares if they found this or that under a microscope? There are general remedies for this.
I do a few alkalizing things -- such as drinking water with a little baking soda in it, bathing while scrubbing with baking soda, drinking a lot of water and no soft drinks, and loading up on fresh, raw veggies. I eat mung beans for breakfast, with a little cottage cheese and flax oil. Yum! But finding those pH testing strips for urine is hard. My lover is absolutely insistent on this. I must find the strips, and I must test my urine every morning. Yes, sir!
I'm grateful to be with a wonderful man, and grateful for the Internet, which has brought me together with informed and helpful women.
I just know that it's an underlying condition, and so I don't focus on the specific symptoms as much. I'm going to alkalize, cleanse of parasites and such, and get good nutrition and supplements.
I've tried the coconut oil -- both ways, you might say -- with less-than-inspiring results, but I may resume that when things are less itchy. I'll start taking it internally again, anyway. At any rate, the idea to use it as a sexual lubricant is dynamite and well worth this adventure to find out about.
Right now I'm getting great relief from two things I found on the Internet: bathing with a little tea tree oil in the water, and inserting a tampon (natural, chlorine-free type) soaked in beet kvass (a fermented product in a jar, available at health food stores). LOL, I didn't have any yogurt on hand! Same organisms, fermented, no milk (which could have its own issues) involved. It feels fine, even if the red color is a bit freaky.
I tried an experiment douching with a few drops of tea tree oil in the water, with mixed and mostly negative results. Douching in general is probably a bad idea without doing other things like the soaked tampon, and tea tree oil is rather harsh and should probably be suspended in another oil like vitamin E or jojoba, and emulsified into the water using a little baking soda. Just some speculation there.
Oh, and taking a drink of two ounces RAW apple cider vinegar and six ounces of water felt immediately great, just inside me in general. There's no way that didn't help my condition. I think I'm going to do that three times a day and really enjoy it.
Gonna check out that "massage" thing. It's been a mystery why I close up when aroused, but consider the mystery solved. Women who have felt this irritated on the outside are not going to let anything into the inside, and it's just a reflex. If you think you've got psychological hangups, rest assured that you probably don't. Just unconscious reflexes, perfectly understandable when you've experienced this pain.
One question: Does anybody have pain in those little corners of the outer vulva where it attaches to the inner vulva, that feel like tiny sores? I'm hoping that goes away, too, with these natural remedies. So frustrating that nobody can see them. I even asked my boyfriend if he could see them, and he couldn't. And he's trained to see things! ... Please don't tell me they're a herpes outbreak or something like that. I honestly don't have herpes.
And by the way, to the person who is afraid she can't get Pap smears -- forget it. There are no data behind those things, and they only find random cancer cells, not tumors, and they don't tell you the odds of these things turning into tumors and killing you. If you get cancer, there are alternatives for that too. But if you alkalize, you likely won't get cancer.
Especially these younger women, the 18-year-olds, should take this as a wake-up call about living on Pepsi and pizza, mac-and-cheese, and fast-food burgers. Get thee to a veggery, girls!"
04/16/2013: Joy from Battleground, Washington replies: "There is a vaginal herpes that is herpes simplex and one that is called herpes zoster which feels similar and appears similar but is a form of shingles from having had chicken pox. Very painful and brought on like any shingles outbreak from emotional stress or trauma, prescription cream used for shingles heals it."
05/20/2013: Southerngirl from Birmingham, Alabama, Usa replies: "Hi, Torontolady from Toronto, Ontario, Canada -- I was curious as to how the bath salts are working. I wanted to try this method if it has proven useful and effective for you. Can you respond on the forum or email me (or can I email you)?"
Pelvic Floor Muscle Stretch
[BETTER BUT NOT CURED] 05/20/2013: Rb from Pala, Uk: "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."Replies
05/20/2013: Joy from Battleground, Wash replies: "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"
[YEA] 05/20/2010: Anna from Las Vegas, Nv, Usa: "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."Replies
05/22/2010: Carley from Seattle, Wa replies: "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!"
05/23/2010: Anna from Las Vegas, Nv, Usa replies: "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!"
06/18/2010: Charlotte from Oxford, Buckinghamshire, United Kingdom replies: "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."
11/18/2010: Livia from The Woodlands, Tx replies: "Anna, your piece on the pelvic floor muscles stretch/vulvodynia was great. It goes right along with what I've been learning about female incontinence and pelvic organ prolapse being related more to posture than anything else, and that the right exercises can really help improve or even correct these problems... (I read about this in "Saving the Whole Woman" by Christine Kent). Anyway, I find it really hard to follow exercises from books/print. I encourage you to do a video to post online about your discovery - and show everyone how to do your exercise(s), and maybe do a link from an earthclinic.com posting. Women the world over need to know they have more choices than surgery (which, knowing what I now know.... Yikes! )"
09/18/2011: Betsy from Mackay, Queensland Aus replies: "Anna, Has your streching maintained its cure for you? I have been trying to do it every day. I'm wondering, is it the same kind of stretch that you feel from lying back on a big medicine ball, really trying to get the strech around the pubic bone? Any advice would be wonderful!"
01/09/2012: Madsta333 from Melbourne, Vic, Australia replies: "Thank you Anna for such a positive story, it's so great to hear of success! I have had vulvodynia for over 5 years and have recently been seeing specialist and paying heaps with no relief yet and I have tried a anti depressants and topical anaesthetics with no luck. This condition is wearing away at my emotional health and my relationship struggles everyday from almost no intimacy. I will try these stretches ASAP, I have also done research and believe there's a more natural cause therefore now natural treatment of the underlying issue. So fingers crossed, just wanted to say a big thanks for the positive success stories, renews my hope that there will one day be some relief. Cheers, Madeleine"
01/21/2013: Rhiannon75 from Aberdeen, Scotland replies: "This seems totally legitimate and will work for many people except those of us with spinal arhtritis, back trauma etc. I have been on other forums and was shocked at the number of people who had low back injury or autoimmune diseases such as Ankylosing Spondylitis that affect the spine. This is my problem, in addition to Lupus, Fibromyalgia, Raynaud's Syndrome, etc. I have degenerative Osteoarthritis of the spine and I feel that that is what is causing both my Vulvodynia and new Insterstitial Cystitis symptoms. Also I am going for more testing this week due to long standing Crohn's symptoms. I have only been diagnosed with IBS but have been suffering with flares for 18 years and I have lived with chronic abdominal and pelvic pain.
I feel a little hopeless about what to do with the stretches because of my back. Every time I try even yoga I end up flaring up the problems worse.
I have had everything from childhood trauma, to recurring yeast infections and bacterial vagninosis, to trauma during childbirth, to using harsh antifungals and antibiotics and spermicides, to developing all of the other autoimmune diseases that could be responsible, to depression, to testing positive for HPV on pap although I never had any visible symptoms.
I am not beyond believing that the in chemicals in tampons, pads, douches, etc. (seriousy inserting plastic in your vagina a couple of times a day for a week for 20 years, or the lightly scented perfumes of pads... How can this not have an effect?) Birth control pills? Especially since we are seeing the age group affected are 20-40 predominantly. Overall it is a modern day problem, like Fibromyalgia, of unknown or denied origin. I am aware that older women have it to, after all they haved lived here long enough to have been exposed to who knows what. I dare say Vulvodynia has potential to be epidemic if these factors are the true cause and people are brave enough to admit this is happening to them. Whether or not it gets addressed is big question.
I also cannot ignore the possibility of GMO cottons in underwear from a certain major lingerie chain could also be responsible. Especially since we are seeing the age group affected being are of the generation shopping there. If you look elsewhere on line you will find that there are lawsuits being filed due to nightmares with the bras.
I wore their underwear exclusively from 1992-2004 with never a thought about pre-washing in borax or hot water soaks. I had never even heard of GMO.
Overall I do feel that the spinal compression is the worst. I am in a healthy marriage of 13 years and in the beginning of our relationship sex was good but I would say that being in chronic pain from other syndromes did affect my tension during sex and often times it would hurt. Now I can't participate at all. My husband is a blessing."
05/04/2013: Krista from Michigan replies: "Oh my gosh, I think this is my problem. Would it be possible to ask you a few questions?"
[YEA] 05/23/2013: Alexandra from Fort Lauderdale, Fl. replies: "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!!!"
09/01/2013: Amt from Virginia replies: "Anna and Alexandra, how did you guys make sure your back was supported while doing this? I keep trying to do this but it feels like my lower back is curving in way too much and feels uncomfortable. My bed is set a little high off the ground. I'm suffering from vestibulitis vulvar and I'm still working on giving this a try.
Also, do you think leg lifts (where you work out your abs by lifting both legs in the air and lowing them while fully extended) would work in a similar fashion?"
Pelvic Floor Muscle Stretches, Multiple Remedies
[YEA] 01/03/2012: Reecee84 from Acworth, Georgia: "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"Replies
[YEA] 03/19/2012: Sapphire from NY replies: "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."
Peppermint Lip Balm
[YEA] 07/03/2013: Melissa from Charlotte, Nc, United States: "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!"Replies
07/03/2013: Andreea from Grimsby replies: "Hi. What brand is the chapstick? Thank you"
[YEA] 11/28/2013: Whitney from Ohio replies: "You are AMAZING!! This really works. I have been in a flare that has been absolutely miserable for two weeks now! This morning I tried making a paste with baby oatmeal bath, left it on for 15 minutes, got a shower, and when I got out I air dried and then used Beeswax with Vitamin E and Peppermint. You're right... It does burn for a little bit, but the relief is unbelievable! This Thanksgiving I am thankful for you, your post and peppermint beeswax lip balm :)"