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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4


TREAT THE UNDERLYING PROBLEM (still cured btw)

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TREAT THE UNDERLYING PROBLEM (still cured btw)

Post  EverythingIsDifferentNow on Sun Jun 25, 2017 10:11 pm

This mostly revolves around unprovoked vulvodynia (since I had it and I'm talking from experience), but it might work for provoked. Not everyone with unprovoked vulvodynia may feel this applies to them.
Hi guys, I've been cured for more than a year now. I've done everything holistically and through months of research. I am confident the majority (if not all) cases of vulvodynia victims have kidney issues/sensitivities and may have an underlying chronic disease they don't know about. Chronic illnesses include diverticulitis, celiac, ezcema, any autoimmune condition, and so much more. If you don't know, look at the simple things. Do you get dandruff a lot, do you have bad body odor, do you have a lot of gas, are you lactose intolerant?  Why do I say this? Everything is connected. If there's even one organ of your body that contains high levels of toxicity, chances are 3 other organs and probably your whole body is affected. This sets off imbalance, and imbalance is everything vulvodynia stands for.  If you have chronic illness, that means your body is in a state of toxicity/acidity, and is more unable to get rid of the toxins that have accumulated in your body since you were born/started to develop the illness. Since curing vulvodynia, I learned I had MANY different diseases going on in my body (almost all chronic illnesses). Don't worry, this is probably not the case for you. What I have is rare, but I just wanted to give you some background info. on me.


When the body is unable to get rid of the toxins that accumulate in your body (in this case, the toxins found in western diet food - processed, GMO, not organic, etc.), then the kidneys aren't fully able to break down the oxalates found even in simple foods like spinach or other high level oxalate foods. Not just that, but acidic foods definitely don't help either (coffee is a biggie). Combine acidic foods in your already acidic body, and high level oxalate foods (or even medium oxalate foods that build up oxalate crystals over time in your body- then BOOM, suddenly you wake up and get a horrible acidic feeling down there -happened to me) and you get the worst disease I myself have ever experienced. The other 7 diseases I have are absolutely fine compared to this nightmare and that says a lot, and that's the only reason why I STILL go on here once in a blue moon to give insight to women/girls out there who were in my terrible shoes long ago.


Solutions? First and foremost, get rid of those oxalate crystals (which are basically acidic crystals) through calcium citrate or calcium/magnesium supplement. Take it EVERYDAY. You will not feel cured immediately, especially if you have a bad case of vulvodynia. For me it took maybe 2 weeks to see improvement, then a month in I felt a lot better. However, take it continually at least for 3 months. In conjunction with this, stop taking acidic foods/beverages like coffee, try to cut out high caffeine drinks like black tea, eat organic as much as possible (with all the research and books I've read, I'm convinced the food in western society is poison and responsible for most diseases today), eat a mainly alkaline diet (this diet greatly soothes the body) and DESTRESS. I didn't think stress was a big deal and dismissed it first coming here, but lemme tell you, it's a pillar of health. It can literally save you from death. Yoga helped me a lot, especially ab workouts.


Recommendations include enemas, liver tonics, prebiotics/probiotics, yoga/saunas, and removal of gut irritating foods. This changed my world around. My mind feels more at peace than ever.


Most western doctors aren't trained in vulvodynia. They are trained in giving patients pharmaceutical drugs to treat the symptom of the problem, which literally makes no sense, since the symptom is the body's natural way of healing itself. This absurd thinking usually ends up making the problem worse/causes confusion and stress in patients. Been there, done that. Been called "crazy...it's just a yeast infection. Here's a $500 cream that doesn't even work. affraid "...ya right. Don't worry, nature is here to help (and cheaper  Razz ).


If you are not your own doctor, you're a fool. -Hippocrates


While you're at it, you might want to address if you have any other health problems. Anything is impossible. The word impossible has "I'm possible". Hope this helps. sunny sunny sunny


Last edited by EverythingIsDifferentNow on Sun Jul 09, 2017 3:54 pm; edited 1 time in total

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Post  mary jane on Fri Jun 30, 2017 7:55 pm

I really like your approach to this, I do think STRESS can cause inflammation and a million other diseases. ALso doing Yoga is very clever to add to this. I've read that if you have central sensitization (meaning nerve pain, IBS, TMJ and other pain) then doing sports is considered one of the treatments.

I have read a lot of books on this topic, I do agree that a low oxalate diet and supplements can help or cure vulvodynia.

However western medicine CAN help and without it we would be dead. For me, medication works, and it works very well. I do add mindfulness, magnesium supplements and probiotics to the mix and they do help, however for NEUROPATHY  it's unlikely that one can be cured through detoxes and supplements. Pain occurs in the brain, that is why we need to take these medications. If you search for some users here, they have had remission from vulvodynia using Lyrica or others. Myself included. They don't mask the symptoms, their point is to interrupt pain signals so they don't become permanent.  you can research this theory. It's about nerve memory. Medications do work for some, as vulvodynia can have very different symptoms from one person to another. I don't know how much GMO is present in UK foods, I've never heard of GMOs cause burning pain or nerve symptoms, maybe it can happen, but to say that your solution works for everyone is sending the wrong message.
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