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.
Seattle, Washington, Usa
San Francisco, California
Seattle, Washington, Usa
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.
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
Los Angeles, Ca
Los Angeles, Ca
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 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 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 have been suffering for 3 or 4 weeks with severe burning in vaginal area. It happened once before about a year ago but thought it was due to a bladder infection. This time I had another bladder infection but even after taking antiobiotics and having been cleared of another infection still had intense burning that would not go away. I was also positive for bv but after two rounds of medication still had severe burning where I could not function (usually very active). I read about calcium citrate and just happened to buy the powder for my bones. I took it and the burning went from 10 to a 4. I am still sore and will be seeing a urologist as I still have a little urgency but I am getting relief. I still may need to see my obygn for soreness but so thankful to get a little break from blow torch burning. Please give it a try, calcium citrate, it neutralizes acid. I hope this helps someone.
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.
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 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.
San Diego, California
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.
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.
Women's Health Update: Cytolytic Vaginosis; A Vaginitis You May Not Have Heard About
Cytolytic vaginosis(CV) is the current term for a condition of lactobacilli overgrowth. It is a little recognized but common cause of cyclic vulvovaginal complaints in women of reproductive age. CV is often misdiagnosed as candidiasis and most women have tried many antifungal medications both conventional and alternative, with little or no relief.
CV was first described as a clinical entity by Cibley and Cibley in 1982 and it was initially referred to as Doderlein's cytolysis (DC). They observed that the symptoms of CV were similar to Candida vaginitis, but when viewed under a microscope, there were differences.( 1,2) The name of Doderlein's was abandoned because these same authors realized that DC only refers to the Doderlein's species of lactobacilli when in fact there are approximately 80 different species of lactobacilli that have been described. CV was then proposed as the more accurate term that described the actual destruction of the epithelial cells caused by the overgrowth of lactobacilli. The experience of Cibley and Cibley was that the majority of the patients referred to them that thought they had chronic vulvovaginal candidiasis actually had CV instead.( 1)
The normal ecosystem of the vagina involves many different organisms that are involved in a system of checks and balances. No other concept in vaginal health is as important as the state of the ecosystem of the vagina. The flora that colonizes the vagina takes place in the birth canal during delivery, and the flora that is established in the newborn girl must therefore consist of the same strains as in the mother. The vaginal environment of a newborn changes during the first month, then again at prepuberty, puberty, during the reproductive years and post-menopausally. Additionally, the cyclic hormonal changes of the menstrual cycle also influence the vaginal ecosystem. It is a variable state throughout a woman's lifetime, but nothing is more key to this ecosystem than lactobacillus. The range of bacterial types isolated is immense, including Staphylococcus species, Garnerella vaginalis, Streptococcus species, Bacteriodes species, Lactobacillus species, Mobiluncus, Candida species, (most commonly Candida albicans), and more. The predominant organism isolated from the normal vagina are members of the Lactobacillus genus. One species of bacteria inhibits another and an elegant combination of pH, vaginal immunity, hormonal activity and the community of organisms that occupy the vagina interact in a manner in which bacterial overgrowth is controlled, unless the well-established mechanism of balance is thrown off by one factor or another.
Factors controlling this defense system include the health of the vaginal squamous epithelium, the dominance of Lactobacilli and the subsequent low or acid pH balance and hydrogen peroxide production, hormonal activity both over our lifetime as well as our monthly cyclic changes, pregnancy, contraceptive devices, feminine hygiene products, and vaginal sexual activity including friction, lubricants, foreign objects, and semen.
It has been proposed that lactobacilli and possibly other bacteria cause the symptoms of CV. Even though we lack full understanding about the exact mechanism of lactobacilli overgrowth, a clinical condition does exist with this overgrowth that manifests as chronic cyclic burning and itching. It appears that this is probably related to an overgrowth of lactobacilli that produces irritating acids.( 1)
Several mechanisms are possible for how Lactobacillus in normal amounts does its remarkable job of controlling the environment. A low vaginal pH is believed to be a primary mechanism controlling the composition of the vaginal micro flora. Lactic acid is produced by the metabolism of lactobacillus and although there may be other ways in which the vagina maintains its normal acidic environment, the role of lactobacilli seems evident. Lactobacilli thrive at an acidic pH of 3.5-4.5 and these values are indeed found in the normal vagina throughout the menstrual cycle.
Lactobacilli have also been shown to interfere with how pathogenic bacteria adhere and colonize the cells of the vagina.( 3) Hydrogen peroxide production is another well-recognized method of antagonism to problematic bacterial populations and there are strains of lactobacilli that produce hydrogen peroxide (H( 2)O( 2)). A lack of H( 2)O( 2) producing lactobacilli predisposes a woman to bacterial vaginosis by allowing the overgrowth of Gardnerella and other anaerobic bacteria. Lactobacilli also act directly as antibacterials( 4) and may function as an immune stimulant locally in controlling microbial levels in the vagina.
But what happens when there is too much Lactobacilli? Several species of lactobacilli ferment both glycogen and glucose to lactic acid, carbon dioxide, alcohol, formic acid, acetic acid, and hydrogen peroxide. It is these acids that cause the problem. When lactobacilli overgrow, toe many acids are produced, causing vulvar irritation and itching.
Symptoms of CV usually mimic those of vulvovaginal candidiasis. The most common symptom is itching, but vulvar burning, dysuria, and entry dyspareunia are often present as well. Cyclical and recurrent symptoms typically occur during the luteal phase and worsen premenstrually, increasing in intensity and severity until the onset of menses. Once the onset of menstrual flow occurs, the blood raises the vaginal pH and there is often dramatic relief of symptoms.( 1)
The physical exam is not particularly different from candida vulvovaginitis. The vulva may appear red and slightly swollen. There may be a small amount of white and slightly clumpy discharge. The vulvar tissues may be a little tender with discomfort during the speculum exam. The cervix, vagina, uterus and adnexae are normal unless there is also some other kind of co-infection. Even the pH of the vagina is normal in CV.
Diagnosis of CV is improved if the clinician has a high degree of suspicion of the condition. The history and physical exam basically mimics candida vulvovaginitis. The key is in the microscopic exam: 1) false clue cells with agglutination of lactobacilli to epithelial cells; 2) few white blood cells; 3) cytolysis of epithelial cells with pale or bare nuclei/cytoplasm and poorly defined cell borders; 4) absence of yeast, trichomonas, bacterial vaginosis, or other organisms.( 1)
Repeat microscopic exams that reveal the same findings is confirmation of CV. As you know, each episode of vaginitis symptoms may be due to a different cause.
The goal of therapy is aimed at reducing the overgrowth of lactobacilli and providing relief of symptoms. Use of antifungal agents, both conventional and alternative, should be discontinued because these agents may contribute to the recurring nature of the condition. Use of lactobacilli in the form of yogurt, supplements and suppositories should be stopped. It may also be wise to discontinue use of tampons because unimpeded menstrual flow acts much like an alkalinizing agent, raising the vaginal pH and inhibiting the overgrowth of lactobacilli.
Baking soda sitz baths offer relief by removing irritating acid secretions from contact with the vulvar tissues and also just a local soothing effect to excoriated tissue from itching. Mix 2 to 4 tablespoons of baking soda in 1 to 2 inches of warm bath water. Sit in the sitz bath twice a day for 15 to 20 minutes. Wash the tub after each use. Baking soda douches should be reserved for women whose symptoms do not respond to the sitz baths. This is because douching removes vaginal secretions and can disrupt the desired organisms in the vagina and create further problems in maintaining an ecological balance. Consider douching with baking soda once or twice a week during symptomatic phases when the sitz baths do not provide relief. Mix 1 to 2 teaspoons of baking soda in a pint of warm water and gently douche either in the bathtub or over the toilet.
Cytolytic vaginosis may coexist with candidiasis and may need to be managed by combining therapy for both. Using the local antifungal agent in the morning and the baking soda gentle douche in the evening for seven days would be an appropriate regime that may need to be repeated monthly in the premenstrual phase of the cycle.
Other recommendations may prove prudent:
Reduce dietary sugar.
Avoid soap in the genital area. Instead, wash with plain water, use pure unscented mineral oil on cotton balls as a cleanser
Wear white, all cotton underwear and launder with mild soap and hot water, rinsing thoroughly.
Avoid sexual intercourse during symptoms and initial therapy. Oral sex should also be avoided during symptomatic periods because bacteria in the partner's mouth may be irritating to the vulva.
As women and clinicians become aware of CV, women with cyclic vulvovaginitis will receive better health care and be managed more appropriately. With improved diagnosis of this condition and accurate treatment, fewer women will experience cyclic recurrences of their vaginitis. Success is especially seen when the wrong treatments are discontinued and something as simple as using menstrual pads are used instead of tampons. Treatment approaches to treat CV must be modified as necessary and practitioners must recognize the individual needs of each patient and be willing to be creative and somewhat experimental, utilizing the basic concepts and understanding of CV that we have discussed here.
(1.) Cibley J, Cibley J. Cytolytic vaginosis. Am J Obstet Gynecol 1991; 165: 1245-1248(supple 2).
(2.) Kaufman R, Friedrich E, Gardner H. Benign diseases of the vulva and vagina (ed 3). Chicago, III, Year Book Medical, 1989: 371-418.
(3.) Chan R, Bruce A, Reid G. Adherence of cervical, vaginal and distal urethral normal microbial flora to human uroepithelial cells and the inhibition of adherence of gram-negative uropathogens by competitive exclusion, J Urol/1984; 131: 596-601.
(4.) Andersson R, Daeschel M, Hassan H. Antibacterial activity of plantaricin SIK-83, a bacteriocin produced by Lactobacillus plantarum, Biochimie 1988; 70:381-90.
Townsend Letter for Doctors & Patients.
By Tori Hudson
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.
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.