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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, …

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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 …

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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 …

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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 …

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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 …

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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 …

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Anti-inflammatory diet

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Anti-inflammatory diet

Post  Zazu on Fri Jun 17, 2011 6:37 pm

Hi ladies,
I posted this on the secret facebook group because there was some interest, and I thought I'd put it here too. I just saw a women's health naturopath and she recommended that I try this, in conjunction with the oxalate diet, and 1000 mg of calcium citrate, to see if I could get the pain down. If nothing else, I figure I'll be eating a lot healthier in general!

The anti-inflammatory diet: Basically consists of promoting natural anti-inflammatories in your body, reducing pro-inflammatories, and making sure you aren't adding things that you are allergic or sensitive to. Natural anti-inflammatories are usually derived from Omega-3, pro-inflammatories are usually derived from excess Omega-6, and sensitivites/allergies usually relate to wheat, dairy, eggs. I have two good books on all this: The Inflammatory Syndrome and the Anti-Inflammatory Diet and Recipe book by Jessica Black. I think it's all about just finding a better balance between the good and the bad - we don't have to become bootcamp dieters. So here's the break down:

Veggies: Eat many and a lot of these! She recommended especially steaming them because then it's easier for your digestive tract to absorb the nutrients. AVOID: tomatoes, and eggplant/aubergines.

Grains: She said 1-2 cups cooked per day unless you have sensitivities. Try to rotate them so you don't develop sensitivities. Try basmati rice, brown rice, quinoa, oats, millet, and rye and there are lots of others. AVOID: Wheat (try rye bread)

Fruits: Also good but stay away from overdoing the sugary ones. AVOID: Citrus except for lemon.

Nuts and seeds: Are fabulous except for peanuts.

Meat: Lots of wild cold water fish (salmon!). Turkey and chicken are neutral (avoid dark meat though). AVOID: Pork is a main source of pro-inflammatories, and beef isn't great but if you have to have it try grass-fed/free run/etc.

Sweeteners: maple syrup, honey, stevia are much better if you have to have them, AVOID: you guessed it, sugar and chemical sweeteners!

Oil: Olive oil, macadamia nut oil. AVOID: Sunflower, safflower, canola,soy, vegetable oil, there are another major source of pro-inflammatories. You'll find a lot of processed foods contain these, which contributes to excess Omega-6.

Dairy: Avoid too much, and if you have to have it, try low-fat because the fats contain the pro-inflammatories.

ALSO AVOID: Peanuts (contain a mold which promotes inflammation), eggs (lots of sensitivities), caffeine (except for green tea), and most packaged/processed foods (granola bars, cereals, tv dinners, etc. etc.).

Hope this helps and I definitely recommend getting a book with recipes and just slowly incorporating good things. Most of this is also in the anti-yeast diet too, so that's a plus. Be well! xx

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Re: Anti-inflammatory diet

Post  Sarah001 on Sat Jun 18, 2011 12:48 pm

I tried an anti-inflammatory diet for a few months after thinking it might help but it made no difference to my V whatsoever and I just found myself getting sick of trying to remember what I had and hadn't eaten that day to balance things out! I gave up after a few months because I had no improvement in my symptoms but that doesn't mean it won't work for others, same as the low oxalate diet. It does have the same issues as the low oxalate diet in one respect though and that is it depends which literature you read about it as they differ in advice about what's inflammatory and what's not.
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Re: Anti-inflammatory diet

Post  Heidi on Sat Jul 23, 2011 1:04 pm

There's a lot of outdated literature on the internet regarding the low oxalate diet and the anti-inflammatory diet. I talked to one woman who was on a "low oxalate diet" who actually was eating potatoes, a lot of white bread, and carrots -- enough so that she was actually on a "moderately high" oxalate diet. If you want to try either of these make sure you get the most up-to-date sources. I suggest any one who wants to try the low oxalate diet to check out the Trying Low Oxalates group on yahoo.com. It is supported by the Autism Research Institute and has very good up-to-date scientific literature on oxalates and how they work in the body. You will find the most up-to-date (very comprehensive list) in their files section. Also the ARI's website has very good articles. The Vulvar Pain Foundation's Low Oxalate Cookbook-Book Two is also very accurate and complete. When you buy it from the VP Foundation they will also send you a bunch of addendum's and new food lists that reflect all of the new testing values for oxalate since it was published. Some women see improvement in the first weeks, most take months or years to reach their best result from the diet as it takes a lot of time for stored oxalates to be released from the body and for your vulnerable tissues to strengthen and heal.

I'm not sure what source is most up-to-date and reliable for the anti-inflammatory diet. Sorry. Just a suggestion to research carefully. I eliminated some of the highest "inflammatory" foods when my pain was at it worst and didn't notice a difference. After I started to heal on the low oxalate diet, I noticed some of these high inflammatory foods were causing flare-ups and again eliminated them. This time I saw positive results. Perhaps I did have results before but was in too much pain to notice the difference. Or perhaps there is some key to the timing of the therapies you try.

Heidi
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RE: Anti- inflammatory diet

Post  ria on Sat Jul 23, 2011 10:16 pm



Heidi,

Are you taking any medication for pain?


Ria Smile

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Re: Anti-inflammatory diet

Post  Heidi on Sun Jul 24, 2011 2:06 am

I recently started using Estrace cream again and taking timed calcium citrate again; no other medications though. At one point in my long healing journey (started having symptoms at 13, had severe pain, burning, itching, rawness over a 5-6 year period in my early 20's, now 42), I just got sick of taking pills and using creams. I stopped all of them for about three months (when I was about 29 or so), then started over, only adding one thing back at a time every couple of months so I could really track how they made my body feel. I found then that I was doing well with a combination of the low oxalate diet, guaifenesin for fibromyalgia (it helped the VP too), and Estrace creams and didn't need any other medications. I continued to have a high quality of life (pain with intercourse, but very little burning or pain during day-to-day activities) over the next ten years until I got pregnant. Then I stopped all treatments except the low oxalate diet. During the first year of my twins' life I got overwhelmed and started eating a lot of high oxalate foods again and started having severe flare-ups again. I am back on the diet and am seeing a lot of improvement. I also added calcium citrate back and just added Estrace cream again in the last few weeks. I know these will get me back to the "80%" better than at my worst place where I was before my twins were born. There have been some new break-throughs in treatment, so I'm cautiously researching them and trying to decide where I'll go next. I have a supportive doctor but really she can't do anything but help support the decisions I make through my own research. Although I'm happy for the 80% recovery I had for so many years (and the probably "50% better than at my worst" I have right now), I'm hoping this time around I'll find my way to pain-free.
Good luck on your healing journey.
Heidi
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RE: Anti- inflammatory diet

Post  ria on Sun Jul 24, 2011 11:27 am

Heidi just looked up Guaifenesin how does it work for Vulvodynia, my V is constant At the moment I am taking Gabapentin, and I have just started a new hormone programme with a leading Doctor in Belgium, also I have the Biofeedback,Dr Glazer. I use estradiol with emu oil I had it made up with a compounding pharmacy in America, I live in the UK.

The problem with the UK they mix alot of there creams with poly glyco we must have pure ingredients. My Doctor in belgium is working on a new cream to try he is having it made up for me.

I use holistic approach to my healing as I am a holistic therapist, Reiki is wonderful and hypnotherapy, reflexology, accupunture all help me keeping my energy in a good place.

Thanks for your imput.

Ria Smile Smile Smile Smile Smile Smile Smile

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Re: Anti-inflammatory diet

Post  Sebby (Admin) on Sun Jul 24, 2011 6:22 pm


I find following the diets difficult only because I do tend to go through periods where I feel sick and cannot eat much. I can suddenly go off most food and can only eat certain things.

I hate it, but I know its triggered when I get very anxious. Its one of the main symptoms I get. I really want to start even eating more veg again. I really need to try, even if I can only manage it when I can eat ok. Its better than nothing.

I really want a new brain as well as a new body!

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Re: Anti-inflammatory diet

Post  Heidi on Thu Aug 18, 2011 3:08 am

Ria,
No body really knows for sure why the gauifenisin helps VP symptoms, too, but a lot of people have "guesses". The Vulvar Pain Foundation found out from informal surveys of their members that at least 1/3 to as many as 1/2 of their members also had fibromyalgia (FM) or FM symptoms. Many also had intestinal, bladder, mouth, eye, chronic fatigue, skin, rectal and "brain fog." (I had about a 3 year period when I wanted a new brain,too, Sebby!) Dr. St. Amand who pioneered the guaifenisen treatment for FM believes that it breaks up and removes (carries out of your cells/body) deposits which become those hard trigger points in FM. He thinks, but is not sure, that those deposits are phosphates. I believe they are oxalate crystals. I have had a couple of tests that show I suffer from hyperoxaluria (the VP Foundation reports that over 80% of their members who have had their urine tested have hyperoxaluria). People who suffer from hyperoxaluria (whether from genetic endogenous production, other endogenous production, diet, or some combination) have been shown to have very high levels of oxalate chrystals in the body which produce lots of pain, itching, and burning sensations. A low oxalate diet lets your body start to release the oxalates that have built up in your tissues (this is in the medical literature for kidney stone sufferers). When I started the low oxalate diet, I did start to slowly dump these extra oxalates in my body, but when I started the guaifenesin the dumping went through the roof! I dumped very quickly and within a year was not as sensitive to oxalates anymore AND had greatly improved my VP symptoms. There is a lot of speculation going on in the research community as to why guaifenisin works or doesn't work. There is also a lot of speculation as to why it may interact with oxalates in the body or possibly the body's production system for oxalates. Anyway, I've talked to many other women who have also seen improvement of their VP symptoms along with their FM symptoms while on guaifenisin but many of these women were also on the low oxalate diet, so that might be the key. Wish I could tell you more. After some really bad experiences with doctors and more aggressive treatments, I also have kept with very benign and health supporting therapies. You might look into it, but if you don't have FM or haven't tried the low oxalate diet, I would go with the low oxalate diet first. Diet seems to fit in well with your current therapies and healing philosophies. Also, some women have had luck with a combination of a "medium oxalate" diet with a diet meant to control the ph of the vaginal secretions. They seem to go together well and might be another option for you.
Take care,
Heidi

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Re: Anti-inflammatory diet

Post  Mouse on Thu Aug 18, 2011 3:59 am

I'm all for looking at diet as a starting place. Going sugar free was bloody hard but the improvement on my V. was incredible. I'm almost sugar free again and could list on one hand anything bad I've had each week.

I got this quote from an article about gluten, its seems to fit with my recovery.... to date!

Dr. Dena wrote: "Whether you have joint pain, cancer or are simply struggling to lose weight, look at what you eat and drink. Food is always your first line of defense."

Now I just have to stop my daughter making that brownie until we figure out how to do it with dextrose.

V.

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GAUIFENISIN

Post  ria on Thu Aug 18, 2011 2:14 pm

Hi Ladies,

Every so often like now Grrrrrrrrrr I want a damn cure I get sick to death putting creams on taking bloody tablets thinking what to wear. So I am looking at Gauifenisin which is for asthma or as a chest medicine? Anyone using it Heidi has mentioned that people get relief fom it. The Neogyn cream is still being used twice a day dont feel any discomfort from it so we will see how that goes. Going to talk to a Osteopath who is really good see what he thinks.

I must say I am ok at the moment but ok is still having background discomfort that drives you mad like a toothache. Evil or Very Mad Evil or Very Mad


I had the MRI scan nothing showed up, but someone was telling me you can have a scan that shows all the nerves, I am going to do my research and find one

Anyone else doing anything different that works?

Take care all Smile
Ria

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Re: Anti-inflammatory diet

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