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» It feels like I’m going to have pain forever
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» It feels like I’m going to have pain forever
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» Gabapentin gel and pregnancy
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» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 0

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

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: 5

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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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