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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

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: 4

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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Salicylate sensitivity may be causing your vulvodynia!

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Salicylate sensitivity may be causing your vulvodynia!

Post  bCherie on Sat Dec 29, 2012 3:03 am

Hi Ladies,

I have posted my 'full' story in another thread:
http://www.vulvodyniasupportforum.com/t932-very-hopeful-a-treatment-i-would-never-have-guessed

But I wanted to post here about Salicylates as I feel it's REALLY important for women with V to know all the possible causes and cures for V!!

If you read my full story you'll see that you could have some purely physical causes (like damaged vertebra). But for me my story happily ends with a food chemical called Salicylate!!

To give you my condensed history (as we could all go on forever about our Odysseys!) I have suffered from V for 6 years now! Apologies but below is as condensed as I could get it!! Skip the brackets if your not keen to read my personal sutff!!

------------------

I have been to 7 GP's, 4 Gynocologist, 1 Dermatologist, 3 naturopaths/dieticians, 1 dermatologist, 1 physio and one medical dietician.

I have been told I have: HYPOCHONDRIA, thrush, recurring bacterial infections, genital warts, systemic candida, food allergies (separately and combined: wheat, dairy, sugar, cashews, caffeine, EVERYTHING) depression (ok that one was true but you understand why), vulvodynia, damaged vertebra, damaged internal organs, salicylate sensitivity.

My symptoms have been: excruciating external vaginal pain, excruciating internal stabbing vaginal pain, painful stomach to the point of feeling my internal organs will drop out my nethers, slight incontinence, waking up with searing stomach or vaginal pain to the point I'm screaming, inability to have sex due to internal and external contact pain, many many self induced symptoms due to using unnecessary creams douches and homoeopathic treatments (please see my full story on why these are a bad ideas), crazy black mood swings, hives, swollen face, weight gain as I can't exercise, excessively heavy periods ( I can go through a pack of overnight pads in one day), rhinitus (runny nose), tinitus (damn but my ears ring all the time), anxiety attacks... blah blah blah

---------------------------

... I read all that and I think maybe I'm a hypochondriac too!

BUT I'm also determined to stop this, I know it's not in my head! So I've pushed to see the BEST in every field I've been recommended to consult for the last 2 years. It's been financially crippling but also in the end rewarding.

If your symptoms sound like mine then here is your possible explanation below:

IN SHORT: You may have a food chemical sensitivity!! There are a few. For me it is Salicylates. If you have a Salicylate sensitivity you are unable to process a chemical that is present in ALL foods. This is NOT a food allergy but a chemical intolerance. If you go on a LOW CHEMICAL/LOW Salicylate diet many of your symptoms will disappear within days. Once you've removed Salicylate from your diet (as much as you can) depending on how bad your sensitivity is your Vulvodynia will either fully heal with time or the pain will be reduced to a manageable level..

READ ON FOR A FULL EXPLANATION:

How Could Something not related to my vagina cause vulvodynia?
Well it's possible that your V is a skin/dermatitis related issue and ceasing to use a certain chemical/natural chemical will solve your problems.

But most V is in fact a physical SYMPTOM of an internal problem.
Up behind your pelvic floor are a bunch of nerve endings that connect into your uterus and vaginal passage. If these nerve endings get pulled on by internal tensions it creates nerve pain.

There is also a tendon that runs along your legs then up through your vaginal passage and into your uterus. If this has strain on it you will experience deep pain and/or the stabbing pain that runs up through your vaginal passage. (this can also cause shooting pains in your legs!)

One common cause of the nerves getting pulled on can be pregnancy. Think of all the extra weight you are carrying above your vaginal passage. This pulls all the nerves out of place!! It is quite common for pregnant women to experience V symptoms.

Another common cause of V can be damage to the lower two vertebra of your spine. If these nerves get compressed it can have a knock on effect with your internal organs that eventually pulls your uterus out of place causing nerve tension in your vagina and eventually Vulvodynia. Seeing a Physio can alleviate this as can getting spacers inserted in between the vertebra to alleviate the nerve compression.

There are absolutely other illnesses that can cause vulvodynia and as I am no expert I'm afraid I can't comment on those! But I would bet internal damage caused by these illnesses is causing the V as it is the nerve endings getting pulled on that causes V.

For me my V is caused by a food sensitivity. Food sensitivities or allergies will cause damage to your upper and/or lower intestines. They will become inflamed and twisted by the damage from the sensitivity/allergy and this twisting and inflammation will in turn pull on your uterus which will pull all the nerve endings attached between your uterus and vaginal passage which will cause Vulvodynia.

If your like me you've been on many elimination diets and cut out many different foods all to no effect. I have personally cut out wheat, dairy, sugar, caffeine, nuts, eggs, many varieties of vegetable and some types of meat. I've even gone vegan. I've done this three different times under the guidance of natruopathic dieticians all to no effect. I appeared to get heather but my V was still present and excruciating! I was eating nothing but bunny food and I was so 'healthy' my skin was glowing but I'd wake up in the middle of the night hyperventilating and in tears from the excruciating V pain.

In the course of looking for answers I eventually got put onto and amazing physio who explained HOW the V was happening (as I explained above). We just had to work out WHY. In the end she identified that I was suffering recurring damage to my lower intestines. Which meant it was something I was eating. But I've already BEEN on every kind of low allergy diet. I was feeling a bit lost (and to be honest crapped off and disbelieving). So I decided to find a medically trained dietician. In fact I looked up the best one in Sydney.

She has 30 years experience and more importantly (and intriguingly) she specialised in food chemical intolerances. Something I had never heard of! On my first visit I filled in the symptoms part of the patient form as being Vulvadynia not expecting the doctor to have heard of it.

In fact she told me she'd treated many patients with Vulvadynia and 80% of them ended up having an intolerance to Salicylates. After hearing my symptoms and all the treatments I've tried she felt confident I was suffering from Salicylate sensitivity and asked me to go on a 5 week low Salicylate elimination diet.

Salicylate is a naturally occurring chemical present in ALL food. It's job is to act like a preservative and pesticide/immune hormone. It's found in Asprin and many medications because of it's pain killing and anti-inflammatory properties. It's so good at it's job that we humans have created artificial preservatives and pain killers that mimic Salicylate so well that people with Salicylate intolerance will react to fake preservative chemicals also.

The worst part is Salicylate is found in most foods, most herbs and spices, most alcohols and drinks many medications and most make-ups, personal hygiene products and cleaning products.

Unlike a food allergy Salicylate intolerance is an inability to process a chemical rather than a reaction to a food. This means that if you are intolerant the chemical will build up in your system like water in a damn. Your body absorbs the chemical from the environment and food until you reach a tipping point and have an episode (whichever your symptoms may be). For me this means my Vulvodynia gets bad!!!

Two days into the diet the excruciating stomach pain I've been suffering completely disappeared. The crazy mood swings I suffer from eased off, the constant rhinitis (runny nose) and itchy mouth I've been suffering (and thought was hay-fever) disappeared. Three weeks in I still have Vulvodynia but it's eased off and based on my understanding from my Physio it is much like a bad sports injury and now that I've removed the recurring damage it should heal with time. Interestingly my insanely heavy periods have also eased off.

Sooo... if this all sounds just a little too familiar too you, find a dietician with food chemical experience and ask them to help you work out what you are reacting too. It may be salicylates it may be Amines it may be one specific thing like pepper or tomatoes!!

If you can't get to/afford a dietician check out the salicylatesensitivity.com website for more information or a list of low salicylate foods. Just trying a low salicylate diet for a week should tell you if you have a problem or not!!

I hope that helps some of you!!! And PM me if you'd like info on the Dietician I see in Sydney, Australia!

xx

bCherie

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Re: Salicylate sensitivity may be causing your vulvodynia!

Post  tinkerbelle2 on Sat Oct 19, 2013 4:46 pm

Hiya hunny, thanks for that was interesting and gives me something to consider! X
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