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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


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

EverythingIsDifferentNow

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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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