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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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 …

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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 …

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Low oxalate diet

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Low oxalate diet

Post  tweety on Sat Jun 19, 2010 1:16 am

Hi,

I saw this article a while ago http://www.seekwellness.com/incontinence/pelvic-pain-therapies.htm

Just wanted to know if anyone had tried going on a low-oxalate diet and also taking calcium citrate tablets? If so, has it helped?

I considered doing it but my slight choc addiction and coffee every morning is a difficult habit to break.

Cheers,

Sue

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Re: Low oxalate diet

Post  Sarah001 on Sat Jun 19, 2010 11:02 am

Yes, I tried it, but I only managed a week on the diet strictly. I've got low blood sugar problems and have to eat lots of complex carbs etc and this diet completely cuts them out! It also cuts out alot of fruit and vegetables and even bits of salad which must leave it very low in vitamins and minerals. I also took the calcium citrate, in fact I still do take that as it's supposed to help a bit on its own. After a week of feeling ill due to lack of complex carbs I stopped following it strictly and now just avoid a few items like tea, chocolate etc but it hasn't helped one bit. It's hard to say if it would have or not as it was only a week but my blood sugar can't cope with such a limited diet.
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Re: Low oxalate diet

Post  Sebby (Admin) on Wed Jun 23, 2010 11:46 pm


Ive looked into it but not tried it.

Too be honest I dont eat most of the foods high in oxalate

Apart from chocolate and tea!!

Oh my days!! I really dont know how I would give them up!!!!

Sebby
xxx
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Re: Low oxalate diet

Post  Sarah001 on Thu Jun 24, 2010 9:22 am

I looked at the list of low, medium and high oxalates and I don't really eat anything from the high group except green tea and I'm not a chocolate fan so I can't see oxalates being my problem either.
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Re: Low oxalate diet

Post  Sebby (Admin) on Thu Jun 24, 2010 10:07 pm


Yeah I read the list of high oxalate foods, I swear I dont know anyone who eats all them foods lol

Like wots a Kumut? and I havnt eaten yellow dock in a while lol
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Re: Low oxalate diet

Post  Sarah001 on Fri Jun 25, 2010 11:06 am

I know! And the list of things they've actually tested doesn't cover lots of things either! I don't kow who decided what to test but I'm with the peson online who said it probably works because it cuts so much out of the diet it's probably removing a food intolerance that's done the trick rather than oxalates. I read some studies where they tested the oxalate level in women with vulvodynia and found it to be no higher than other peoples so it's not a scientific solution either.
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Re: Low oxalate diet

Post  Sarah001 on Sun Jul 04, 2010 1:46 pm

I came across a very interesting article online the other day, I've lost it again now but basically it says that for calcium oxalates to form in excess quantities the ph of urine must be too acidic so I think testing your urine ph may help to establish whether you are a good candidate for the low oxalate diet or not. If you google urine ph there are lots of sites that tell you the correct ph for urine (I think I read about 6 somewhere but don't quote me on that) and you can buy ph strips online if you just search for "urine and saliva ph strips" so it's an easy enough test to do at home and may help you decide if you need to try the diet. The lower the number on the test strip the more acidic.
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Re: Low oxalate diet

Post  Sebby (Admin) on Sun Jul 04, 2010 7:06 pm


Fanx Sarah, I will ask the doc to test me urine when I can get an appointment. Damn surgery lol
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Re: Low oxalate diet

Post  Mouse on Thu Oct 28, 2010 5:42 am

I eat a lot of things on the medium to high oxalate list and I'm not giving them up without a massive tantrum.... or I may just throw that in for free.

I eat berries, almonds, oranges and sweet potatoes nearly every day. I told my GP I'd look for the proof (ie the pee) before I'd do it, she wasn't fussed anyway.

Is the evidence anecdotal?

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Re: Low oxalate diet

Post  Sarah001 on Thu Oct 28, 2010 6:56 pm

It's one of those treatments some women do incredibly well on but the majority don't. If you eat and drink alot from the medium and high categories I'd suggest testing your urine ph to see if it's a likely source of your pain. It's basically the same diet they give to people who suffer from kidney stones. It is very restricted though and low in alot of useful things like fibre, vitamins and minerals so very hard to follow for any length of time. I took the Calcium Citrate for several months and dropped the few items I ate and drank that were deemed high in oxalates and noticed no difference at all unfortunately so I gave up. When I reintroduced coffee, tomatoes and green tea I noticed no worsening of symptoms either so it obviously wasn't the issue for me. Might be worth a try though, you won't know for sure unless you try it out.
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Re: Low oxalate diet

Post  Mouse on Sat Oct 30, 2010 12:06 am

Thanks for that Sarah. I already have a very restrictive diet and struggle to get enough carbs as it is. Carbs also give the happy vibe and I need as many of those as I can get at the moment!

I don't have burning when I pee but would certainly want to get that tested in the first instance. My specialist mentioned trying the low oxalate diet I told her I wasn't keen as well.

There is a woman on the vulvodynia FB group who has cured herself through diet and stress reduction. She talks a lot about PH levels.

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LO Diet has really helped me!

Post  Heidi on Sun Jul 17, 2011 8:58 pm

I have been on the low oxalate diet for almost 18 years and it is the one treatment that has really helped me A LOT. I can't express how much this has helped me. I strongly encourage any woman with vulvar pain to give the diet a good try (at least 2-4 months), or at least get your urine tested for hyperoxaluria to see if it's likely to help. It takes a long time for your body to dump extra oxalates, so if oxalates are a problem for you, you may not see the full benefits of the diet for awhile. Most women see gradual improvement over months or even years on the diet. I saw improvement in about a month, but it took almost 3 years to get to a high quality of life again. Others see a huge improvement in as little as a week. It varies a lot. If you decide to try it, either join the yahoo.group called Trying Low Oxalates (free and lots of great resources and recipes in their files) or get a copy of the VP Foundation's Cookbook--Book Two for an accurate list of the oxalate content of foods. Most of the lists you find on-line are VERY outdated, contradictory and inaccurate. You owe it to yourself and your health to get an up-to-date accurate list if you decide to try this treatment.
You can get more information about the low oxalate diet at my blog: http://lowoxalatefamily.wordpress.com

Goodluck on your healing journey.
Heidi
http://lowoxalatefamily.wordpress.com


Last edited by Heidi on Mon Jul 18, 2011 7:24 pm; edited 1 time in total (Reason for editing : wanted to give more information about my own experience with the diet)

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Re: Low oxalate diet

Post  Juliebo on Mon Jul 25, 2011 6:56 pm

I wanted to try the low oxalate diet but I couldn't make sense of it. All the lists of food value's differ. confused One would say a food is low and another list would say it was med or high. All my favorite foods are in the med/high catagory.

Yesterday I thought I would try the Gluten Free diet. I think I can live with this one for a couple of weeks and see if it helps the torch like burning.

Talking with my Dr. it doesn't sound like there is a cure. Sad Only to manage it. Wow, that makes me depressed.
I have tried just about everything and so far only Crisco helps some. I'm on a steroid cream for a few weeks but have not seen one bit of help.

So has anyone else gone Gluten Free and if so did it help at all?

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Re: Low oxalate diet

Post  Heidi on Thu Jul 28, 2011 4:58 pm

You are right. Many lists on the internet are contradictory and inaccurate or don't reflect new testing techniques. Even the ones published by medical websites or given by doctors are often inaccurate (and almost always incomplete) if they haven't updated their lists recently. The most comprehensive, reliable list you can access for free is in the files section of the Trying Low Oxalates yahoo group (google this and it will come up). The file section also has a beginners guide to the diet. You can sign up for the list serve to access the files. If you don't want to get all the emails (there are a lot), sign up to read messages on the website instead of getting emails. Then you have access to all the resources. You can also do a search of the messages and read what other women have been saying about their vulvar pain. Be forewarned that this group is mostly parents who are trying to help their autistic children, but there are people on the list trying the low oxalate diet for many reasons. Another good approach is to buy the Vulvar Pain Foundation's Low Oxalate Cookbook--Book Two (if you buy from the VP Foundation they also send you updated lists since the book was published). It has reliable oxalate values and step by step guidance for starting the diet, specifically for the treatment of vulvar pain.
These are the best, most reliable sources out there. Both are based on the research of Michael Liebman, Ph.D., one of the foremost oxalate scientists in the world.
Instead of re-listing articles and resources here, you might want to visit my blog and access the links to these resources plus a bunch of other articles and resources. I'll be adding new ones as I find them.
Hope this helps.
Heidi
http://lowoxalatefamily.wordpress.com


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Re: Low oxalate diet

Post  sarahmlewis on Mon Dec 19, 2011 6:05 pm

Thanks for your information. I'm thinking of trying the diet as I have been advised that unless my local anaesthetic cream works, I will be on amitriptyline for most of my life to help my vulvodynia.

In your post you say 'get your urine tested for hyperoxaluria to see if it's likely to help'. Can you tell me what's the best way to go about this? Will my doctor be able to do a test for me to check this? Is there also a blood test I can ask for? I've read elsewhere that some people may have high oxalate in the blood/tissues that may not necessarily show up in urine tests.

Thanks a lot - I'd be really grateful for a reply

Sarah

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Re: Low oxalate diet

Post  Kam10 on Tue Jan 17, 2012 11:47 pm

I tried it and it didn't help me. When I first saw my specialist she had avoid 8 foods for two weeks. I lost my list, but I think some of the foods were tomatoes, strawberries, red wine, spinach, wheat bran, citrius fruit. Then I added a food item back into my diet onces every couple days. If I had a flare up that was sign that food would give me problems. In addition I took Calcium Citrate vitamins. Nothing caused a flair up for me, and I noticed no improvement while on the diet.

However, everyone is different and it could work for you.
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Re: Low oxalate diet

Post  JemimaSurrender on Wed Jan 18, 2012 12:29 pm

I saw a dietician last week, partly for the low oxolate diet, and also just because my GP thinks I'm too skinny and pale!

We wen't through a list of the foods that I should avoid, but there was only one (chocolate) that I actually eat on a regular basis, so that's all I've had to cut out.

I'm not too hopeful as I stopped eating chocolate and crisps for at least 6 months last year, just because I wasn't really bothered about eating them, and I never got any better. But I guess things change so it's always good to try.

She also said that although spinach is one of the foods to avoid, after I've tried the chocolate avoidance, I should try eating spinach as it's a good source of iron (I think!) and that may make a difference.

Who knows eh, it's all fun and games!

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Low Oxylate Diet + Calcium Citrate Cured my Vulvodynia

Post  michelle9876 on Wed Feb 20, 2013 1:42 am

After years of vulvar pain that negatively affected my marriage and countless frustrating doctor's visits, a urologist finally told me to try the low oxalate diet and calcium citrate. Within a month or less I had no pain. This was 20 years ago before the internet and none of my OB/GYNs knew anything about the issue. I was later able to go back to eating a regular diet. Now and again I will feel the pain coming on and watch my high-oxalate foods and start taking calcium citrate again and the pain is gone very quickly. This cure might not work for everyone but it saved my life and is well worth a try. It does not have to be a life-sentence, as I think once the crystals go away it takes time for them to build back up--or it's a cycle where the tension of muscles in response to the pain causes the crystals to build up and then once you break the cycle you can eventually go back to a regular diet.

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