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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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 …

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 …

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Very Hopeful! - A treatment I would never have guessed

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Very Hopeful! - A treatment I would never have guessed

Post  bCherie on Thu Jul 12, 2012 9:50 am

I've found over the last 5 and a half years that solid information is hard to come by.
I've also found that having severe vulva pain is incredibly isolating and de-feminising.

I first started getting vulvar pain when I turned 30. Since then I've seen 6 GP's two Gynecologists, 3 Natruopaths and a Dermatologist. I'm probably more educated and read up on the vulvar and it's functions than any non-professional woman I know.

I've ridden the hope merry-go-round of new diagnosis with a light at the end of the tunnel to failure and depression. I've watched my relationship implode and my self esteem plummet to the point where I've wondered if life is worth living. All while living with constant and permanent pain.

I've been told:
I have systemic candida
I have thrush
I have bacterial infections
I have genital warts (that was fun they 'burnt' my lesions only to find AFTER that I did NOT have genital warts)
I have eczema
That it's all in my head and I should consider seeing a therapist
That I'm allergic to wheat
No I'm allergic to dairy
Oh wait I'm allergic to peanuts
Actually I'm allergic to my own body (no really? yes they said that!)
I have vulvadinia
I have Lichen simplex (this is dermatitis caused skin lesions)

.... now this last one is where I have hope! My new dermatologist has a long history of expertise in treating vulva pain/vulvadinia/lichen simplex. Her very simple answer was VERY unexpected on my part. She knew ALL of my symptoms including one's I never told my GP's/Gyno/natrupath.

In short my lower vertebrae are compacted and out of alignment due to my bad posture (I am both a computer geek, and have big boobs) and the fact that I am overweight (adding pressure to my already out of alignment vertebrae). These lower vertebrae are responsible for sending messages to your whole pelvic region. When compacted they send out pain messages that manifest in the manner of stabbing vaginal pain, burning, itching, feeling like you need to pee but can't, aching, painful sex, slight incontinence and more. This is called pain referral.

Have you ever been told by your physio that your RSI in your elbow or wrist is due to your back being out because you're slouching? Well this is apparently very similar.

The answer? First loose all the excess weight! ok
Second see a physio to get my bad posture addressed and fixed
Third do physio guided pilates.

I am told that within a year (if I follow all instructions faithfully) the pain will be permanently gone.
Right now I feel like crying. This is so simple and yet I never would have thought it in a million years.

With every diagnosis I've had I've felt defeated before I started. They've all felt like treating symptoms to some 'unknown' problem with out addressing the cause.

It would take too long to list all the reasons why this rings true for me. And I know it will certainly not be the same case for many women (as there are no doubt many causes). But my gut tells me that for the first time this makes sense. My Dermatologist has treated other women successfully for this same thing! AND she is well regarded in this field of medicine! And looking back on all my worst episodes, this explanation makes sense!!

My Dermatologist is in Sydney Australia and her name is Dr. Gayle Fischer. I'm not sure if I'm allowed to say her name in this forum. If I am not then please contact me through this forum if you want to ask me anything!

Dr Fischer is an absolute miracle for me! I think she is quite possible the most wonderful person I've ever met!!

I will post again in a month or two to let you know how the physio and pilates is going!!

-------
If you think you may be like me but have reservations below are some of the things I've learned.

If you've been on endep (or another anti-depressant) and it worked for a bit then slowly stopped working this is because it works like a pain killer. It blocks nerve pain the same way regular pain killers block headaches etc. So it doesn't actually fix the problem it just masks it. Over time your body becomes used to the Endep and it stops working and you start feeling pain again because you never fixed what was CAUSING the pain.

Also if you've had times where you've actually smelt bad (I'm sure some of you know what I'm saying) and your wondering how back pain could cause that you probably did something like I did.

- DON'T EVER use tea tree oil/cream on your nethers! It is too abrasive and actually causes dermatitis and encourages you to smell! Naturopaths are flat our WRONG in recommending this as a 'thrush or 'bacterial' infection cure.

- don't stuff yoghurt/acidophilus tablets or any other food group up there! It DOES in theory help with thrush, BUT if you don't actually have thrush (or anything other than a back problem like me) it can encourage infections... leading to smellyness!

- don't self medicate with over the counter candida treatments if your GP hast told you repeatedly that you don't have thrush (no really, I was convinced she had to be wrong because I itched!!). Again overuse of candida creams can cause a dermatitis reaction which can again lead to smelliness

- DON'T use feminine incontinence pads when you don't have your period. This one can be hard. Especially if you have discharge or slight incontinence. But these products have perfumes and chemicals in them that can aggravate your skin with prolonged use. You are actually making the problem worse!

- and the simplest one. Don't wash down there with soap! Start using scent free sorbolene or another dermatitis recommended body wash.

PS. I am not a doctor. These are my own observations.

I decided to post my personal experience because in the nearly 6 years I've been searching for answers I have NEVER even heard that a bad back could be related to all this heartache! I am very excited to see how I go over the next few months!



Last edited by bCherie on Thu Jul 12, 2012 10:31 am; edited 1 time in total (Reason for editing : wanted to add a more useful subject title - sorry should have throught it through better!)

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nerve entrapment

Post  KathyH on Thu Jul 12, 2012 3:42 pm

Hi bCherie,

I started having big problems with a painful vulva etc after a hysterectomy. Could`nt undestand why all the Doctors I saw told me that there was nothing wrong, I was feeling desperate.

My GP gave me Amitriptyline and anti inflamatries which had not affect at all. She spoke to my Gynecologist and they agreed that the pain was probably due to scar tissue, so they decided to operate again, this did no good and I felt worse and worse. Back to the Gynecologist who decided that it my be due to nerve entrapment in my back due to the position I was put in during the operation. He put me forward for and MRI scan, then to see the back doctor at the pain clinic. While waiting for these apointments I went to see a Chiropractor and she agreed with the Gynecologist, did a few adjustments to my back, she had to be careful as I still had internal stitches, and` hey presto`, I am 80% better, can`t believe it. I am still waiting for scan (which I will attend). I am going back to Chiropractor tomorrow, Friday 13th and hopefully she can help with the 20% discomfort still remaining.

Do keep up with the exercises they have given you and hopefully they will help you, or you could try a Chiropractor as I did.

I only had my problem for 6 months and was at my wits end. I can`t imagin having it for years and years.

Hope this information helps.

Wishing you good luck, keep us informed.

Best wishes

KathyH :


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Re: Very Hopeful! - A treatment I would never have guessed

Post  bCherie on Thu Jul 12, 2012 9:57 pm

Hi KathyH,

Thanks so much for sharing your story with me! It so encouraging to hear you had some success with the chiro!
It's funny I think when we research our condition we look for people like ourselves with symptoms like our own.
Now that I've been told back damage can cause/contribute to this I'm seeing other women with the same experience!

I guess the big joke on me is I stopped exercising because it was too painful. Which has contributed to me putting
on weight which has made my back worse and so my vulvodynia is worse!

It helps a lot knowing you've had success with a chiro! It's makes chasing this down so much more important to me!
Thank you again for sharing with me I really appreciate the support, I hope your next chiro visit is successful and everything continues to go well for you!!

xx

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..

Post  lavrose on Fri Jul 13, 2012 12:27 pm

Ive heard about that helping other women. One women I read about said, she saw a natural healer, and she did a reading on her, and it turned out to be something like what you described, a back issue. She started seeing a chiropracter, and the pain improved for her 90%
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....

Post  lavrose on Fri Jul 13, 2012 12:33 pm

Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.
The relationship part of this::

Ive lost amazing men,and amazing opportunities at an awesome sex life, mind blowing sex, because of this condition. My daughters father left me, and another guy I really Loved left me aswell, and told his best friend that I was frigid.
Sex hurts. There have been rare times for me in life where it didnt hurt, and Ill remember those times for the rest of my life. I have suffered every horrible experince you can imagine, becuz of this. To having them cheat, to leaving me, to seeing people that I Love suffer, and be frustrated and feel guilty, becuz they want normal awesome sex, with someone healthy, and feel bad about it. Its awful. Not only does this problem, destroy your sexual desire,and affect your hormones, its makes your vagina very dry. Since I started the essential oils, I actually have pain free sex sometimes, and normal vaginal discharge. Also probiotics everyday are a must!!
New oils I am trying. Palmarosa, lemongrass, eucalyptus, and manuka oil. East cape manuka brand. ) Good luck and much Love. I still feel like the only women in the world with this issue, and I feel cursed sexually, and it helps my psyche so much, to know that I am not the only one.

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Re: Very Hopeful! - A treatment I would never have guessed

Post  bCherie on Sat Jul 14, 2012 12:32 am

oh lavrose, I'm so sorry you've been through such a hard time.

I understand what you're saying about this causing broken relationships too.
My partner of 6 years cheated on me because he ended up thinking I just didn't want sex and wasn't attracted to him, which couldn't be further from the truth.

We ended up getting counselling and are still together but it is hard to accept that I am partly to blame when I can't control this, although I very much understand his point of view! I know how I'd feel if the situation was reversed.

I was over the moon when I saw my dermatologist and she told me this was all caused by my back. But I am still scared that this will end up being another false diagnosis. I'm holding onto my hope though as my Dr is very good and highly respected in this field in my country. She's even written a book on it so I know there are women she's cured this way!! Sometimes I've wondered if previous Dr's and Gyno's reeeaaallly cured anyone because I know for a fact I've left a Dr never to go back and they're under the impression they've cured me when in fact I just realised they couldn't help me. This time around I know for a fact that my specialist has had success in this field!

Thank you so much for sharing your story with me, my heart goes out to you for everything you have been through, I hope things turn around and get better for you xxx

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WOOO!

Post  bCherie on Wed Jul 25, 2012 9:20 am

Well as promised I'm back after my first visit to the Physio.

I was expecting to be told it was all about my back and I was expecting it would take weeks if not months to see results.

I gotta admit I'm pretty blown away.

My physio (a goddess of a woman) took lots of notes about my symptoms.
Then she did a very gentle assessment of my internal organs (surprising) then she did some very gentle adjustments and she explained as she went.

Basically she said she found over the years that just treating bones and muscles wasn't enough as this didn't always cure pain. I have no idea how she learn't all her skills but she is awesome. She said that just like we can get overly tensed muscles or skin, and scaring and external pain, so the same things happen to our internal organs. It's just we can't see them. She said kidney stones, bladder infections (and many more things) can cause stress to our inner organs and just like a sports injury if not addressed it can get worse not better and it can start having a chain reaction with other organs that worsens the situation.

After examining me she said my left kidney, bladder and uterus were all tensed and pulled up and twisted to the side. She said the side effect of my bladder being tensed and pulled back is my vag nerves being on fire. The bladder sits right near the pelvic area and can cause this problem if unhappy!!! Ok I figure that's all ok. Then she does some very gentle manipulation of these areas and my tail bone which she said was being affected by my uterus (this is attached by muscles to your back)....

... well honestly I was blown away. Not only did my unmentionalbes stop burning, the feeling that I constantly needed to pee disappeared AND my back stopped hurting! All in 20 minutes! BLOWN-A-WAY!!!

It did come back after a few hours but she did tell me that would happen. Basically regular physio to fix the problems and pilates to improve my core strength should see this whole nightmare fixed!

I honestly can't explain how grateful and humbled I feel! I think my luck finding this lady was HUGE as I know not every Physio uses this all encompassing method.

If someone had explained this to me a week ago I would have been sceptical but I honest to god experienced the results my self right then and there! I'm so happy!

If anyone in Sydney/Australia wants this wonderful womans name just PM me!


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another little update - WOO HOO!

Post  bCherie on Tue Aug 21, 2012 1:58 am

I think one of the most depressing things about vulvadynia is there is often no good news on the forums.
But I honestly think that is just because once we are 'fixed' we are happy and living our lives.

So.. a quick update to let everyone know how I'm going!

SUCCESS in a word!! Very Happy Very Happy

No I'm not 100% cured but I fully expect to be. If you read the post above you get the technical reasons for my problems. But not the cause. 4 Sessions in I know understand WHY I have all these problems!

And I gotta tell you I feel like quite the 'bumble bee'!! (A nickname I've always had because I'm clumsy)

So I walk, sit, hold my stress and (ahem go to the bathroom all wrong). I tend to use my back muscles, butt muscles and the backs of my legs to do all the grunt work in my life. When I walk I push hard with my butt and the backs of my legs. When I'm stressed I clench my butt (weird I know), when I pee I 'push down' instead of relaxing... the list goes on. What it comes down to is all this incorrect muscle usage has put pressure on my internal organs and tendons which has in turn contributed to everything getting pulled out of position (which in turn causes all my vulvadynia symptoms).

I'm relearning the correct muscles to focus on when walking and sitting and the 'correct' way to go to the bathroom (ha ha who knew there was a wrong way!) and I'm about to start pilates to help with all of this.

I already feel so much better and can feel REAL results!!

Vulvadynia often also has painful sex symptoms and it certainly does for me. I had my first 'internal' exam which was a bit intimidating but was so enlightening I'd do it again in a heartbeat.

All the organ tension mentioned in my post above had caused my uterus to become twisted. The physio described it like this. "Think of your uterus as an upsidown sock. Only it's not just one sock it's several all layered inside each other. Now if the uterus gets twisted and the 'socks' no longer line up perfectly this can cause pain!! For me the pain was in the entryway to my vaginal passage (ouch man) She did simultaneous manipulation on internal/external positioning and I kid you not the pain eased right off!!

ALSO there is a tendon that runs through your vaginal passage that is influenced by your uterus and leg muscles. So if your a genius like me and holding all your tension in your butt/back it can cause this tendon to become inflamed and damaged (same as a sports injury tee hee). So she spent some time 'stretching' this tendon out to release some of the tension (I assure you not a sexy experience at all) and again a lot of deep pain (especially at the top/uterus end of my vaginal passage) eased off and disappeared.

Sooo i keep working on my 'new' ways of walking, sitting etc and I keep seeing the physio to treat symptoms of my bad habits until my new good habits stick and eventually I expect to be 100% better!! And this isn't just something I've been 'told' as with so many of my previous treatments!! This is something I'm already experiencing! Wonderful hey!

Now for anyone in Australia this is not a common treatment here! My physio went to america to learn this type of treatment. So if you like I can put you in touch with her. Even if she's in the wrong state to you maybe she can put you in touch with someone that can help!

Good luck everyone I wish you well with my whole heart and hope you find your answers!


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Re: Very Hopeful! - A treatment I would never have guessed

Post  ivyrose on Fri Sep 07, 2012 1:38 am

this is very interesting for me, having discovered recently that my v pain is also caused by my back! it is great to see this knowledge being spread more and more on this forum as many doctors are not willing to accept that a trapped nerve in the back or a misalignment could be the problem. i am also seeing a chiropractor who has helped enormously. best of luck to all of you x

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Re: Very Hopeful! - A treatment I would never have guessed

Post  JemimaSurrender on Mon Sep 10, 2012 1:37 pm

In short my lower vertebrae are compacted and out of alignment due to my bad posture (I am both a computer geek, and have big boobs) and the fact that I am overweight (adding pressure to my already out of alignment vertebrae). These lower vertebrae are responsible for sending messages to your whole pelvic region. When compacted they send out pain messages that manifest in the manner of stabbing vaginal pain, burning, itching, feeling like you need to pee but can't, aching, painful sex, slight incontinence and more. This is called pain referral.
This sounds exactly like me!

I've had a slight pain on and off for a while now but it seems to be getting worse over the last few months. It seems to be at the very bottom of my back, basically the top of my bum! It shoots down my legs too when I'm walking sometimes, and can become very painful. A few days ago I went to get out of my seat and something snapped, and it was shockingly loud too, I am only 23!

I have just started a course of acupuncture though and today for the first time she put some in my lower back to target the bladder channels apparently, and as soon as she did I felt it in all the spots I'd been hurting in in my back. Since I left I've felt something strange all day, but it's a little exciting.

Now I've seen this post from you it's made me kind of hopeful again, and fixing anything else that's wrong in your body is a win win really, whether it helps down there or not!

Thanks again for your post!

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Re: Very Hopeful! - A treatment I would never have guessed

Post  Loulou on Sat Sep 15, 2012 8:25 pm

Hi all

I'm also having a lot of success with chiropractic treatment, yoga and pilates (see my previous posts over last few months) - even having some normal days now so for those of you going down this route, keep going!!

BPCHerie - it was really interesting to read what your physio was saying about misaligned internal organs, it makes a lot of sense to me. If there's been musculo-skeletal issues then given how closely everything is packed in the body its bound to have an effect on organs. Gonna ask my chiro about it at my next visit, tho of course she doesn't do any 'internal' work.

I had a bit of a light bulb moment reading some of your tips. I too clench my bum when stressed (you're not alone) and I never realised till I read your post that I pee by 'pushing' too! I now understand why I sometimes get comments like "that was quick" when i come back from the toilet lol. I'm now going to pee in a more relaxed fashion as part of my 'get back to normal' regime- so many thanks for the advice!

Any further detail you can give on how to walk and sit correctly? It all helps.
x

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Re: Very Hopeful! - A treatment I would never have guessed

Post  Sarah001 on Sun Sep 16, 2012 1:43 pm

I'm also a "butt gripper" and push when I pee if I don't think about it, very common side effects of a misaligned, unstable pelvis and actually it's very common to find women clench their glutes too so not weird!
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Re: Very Hopeful! - A treatment I would never have guessed

Post  bluekangeroo on Mon Sep 17, 2012 1:28 pm

This is really interesting, I too am seeing a chiropractor who thinks my v pain could all be related to my misaligned pelvis - which is twisted in two directions! She also is a big fan of Pilates for helping the problem.

But I have had 8 sessions so far and its been up and down but I am still in a lot of pain - have had to resort to Lyrica now... But am still seeing the chiro in the hope it might help.

It's interesting to see so many people getting good levels of improvement from this route.

I've been told that the longer you've had the pain the longer the treatment takes, Ive had it 12 years, so I guess I can't expect an overnight fix.

Ax

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Re: Very Hopeful! - A treatment I would never have guessed

Post  amy4929 on Mon Sep 17, 2012 4:47 pm

Hey, this has made me feel really hopeful! I have been diagnosed very recently and I'm finding it incredibly difficult to deal with. I think my way of dealing with it is to research it as much as possible! I have very bad posture which many people have noticed, basically my bum sticks out Razz and I also had to wear a plaster mould when I was born because of a dilocated hip.
So thank you, I'm going to talk to my doctor about this now Smile

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Re: Very Hopeful! - A treatment I would never have guessed

Post  pepper7 on Tue Sep 18, 2012 8:28 pm

Wow bCherrie! You have, down to the last detail, described my symptoms, my pain, my diagnoses, my treatments.....Are we sharing a cooch!?
The allergies? I have them! All of them, the thrush diagnoses? Yeah right here, the treatments? Hello!
I cannot believe how similar our variations of the conditions are! I need to do whatever it is you are doing!
PX

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Re: Very Hopeful! - A treatment I would never have guessed

Post  bluekangeroo on Wed Sep 19, 2012 8:42 am

Amy - you should definitely see a chiropractor, mine specialises in new born babies and has seen so many problems that start from birth which could have been avoided if taken to a chiropractor early on. It's not too late to fix it now - it just might take a bit longer!

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salicylates you say?

Post  bCherie on Fri Dec 28, 2012 8:55 pm

Hi Everyone!

Well it's been a while since my last post so I thought I'd pop in for an update.

You could be forgiven from my last posts for believing I would be announcing my recovery. But I'm sure as sufferers of V yourselves you are unsurprised to hear my wonderful physio didn't quite pan out the way I expected.

But don't despair!! Life works in funny ways!

I worked with my physio Liz for about 6 months. She undid the knots in my internal organs one at a time. My kidneys, my uturus, my liver and on and on... and always a big knot of tension radiating from my lower intestines.

Eventually Liz told me that she was fairly sure of the problem now, but all she could do was maintain my level of comfort unless I found out the cause. You see she felt the damage was recurring between each visit and it was radiating out from my intestines. That's right my V is caused by my intestines being inflamed and twisted up/damaged.

She told me I needed to work out what I was eating that was causing this. And recommended I see a Dietician.

Well I needn't tell you how pissed off I was. I'm sure a lot of you can guess. I mean what the F*** if you'll pardon my foul mouth. I'm right back where I started with someone telling me I have food allergies??

My problem with this ridiculous theory is that I have BEEN on the elimination diet THREE damn times. I've gone of wheat, dairy, alcohol, sugar, man made fake chemical laden food. I've gone off EVERYTHING to no damn effect. I lived for 9 months on bunny food and while I looked great my V was as excruciating as ever. So to say I was pissy with my physio for arriving at this conclusion is an understatement (poor Liz!!)

But Liz told me she had a patient who's only food allergy turned out to be tomatoes and another patient who couldn't eat pepper. Soooo... I did consider doing this alone but I'm so damn tired of guess work I decided to look for a Dietician. And If I was going to do that I wanted the best I could find where I live.

I found a lady in Sydney who's been doing this for 30 years and has worked at and through the North Shore Hospital. The part that intrigued me is that while she specialises in helping people with food allergies she also dealt with food chemical allergies (??? says I). You might guess a little light went 'bing' when I read that and I had a sinking feeling before I even went!

Well the day arrived. I filled in my 'symptom' as being V expecting her to have no idea what this is.
To my surprise she tells me she's helped many women with V. Not only that but in 80% of cases the cause is a chemical in food called salicylate. (BOM BOM BOOOMMM cue music of doom).

Cheesyness aside she laid out a low salicylate elimination diet she'd like me to try out. Apparently once I've done 5 weeks on the diet she'll start doing 'chemical challenges' to work out exactly which salicylates I'm reacting too (yes there are a few types).

Since it was leading up to Christmas we decided I'd try the diet leading up to christmas but not do the strict 5 weeks until after.

Being an all or nothing kinda girl I figured I'd go strict up to christmas and enjoy the holidays only before going strict again.

... here's the horrible/wonderful news... two days into the 'strict' low salicylate diet all the excruciating stomach pain I've been living with just 'poof' disappeared... would you believe it? I'm 'allergic' to a chemical and not a 'food' and the funniest part is salicylates are highest in green foods so OF COURSE I felt bad when all I was eating was bunny food!!

The V pain hasn't gone away yet.. but it most definitely has reduced! And with my new understanding from my physio the V is a symptom of my intestinal damage. Much like a sports injury it will take time to heal but now that I'm not aggravating the damage by eating salicylates it WILL heal up!! WOW!! So wonderful!!

To say I'm bummed as hell about the whole salicylate thing would be an understatement as the list of foods I can eat has dwindled dramatically but I'm trying to stay positive!! After all I my have a limited diet but I'm slowly getting my health back!!

Very hopefully THE END!!
If anyone in Australia/Sydney would like my dieticians name just PM me!!

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

For women with V who find their guts/V hurts when they sit down/stand up, turn around, climb stairs, walk you MAY have a food chemical intolerance. If you've tried every elimination diet under the sun to no effect this could be why. It is VERY MUCH worth seeing a very good dietician to try and work out if this is true!! I was very sceptical but with tangible results I now believe it!

If you can't get to/afford a dietician check out the salicylatesensitivity.com website. They are all about salicylate sensitivity and lists the 'low' chemical foods. If you try the diet for a week you'll know straight up if you have a problem as you should feel some relief within days!!


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For those who are just curious Salicylate sensitivity isn't a food allergy but an inability to process a chemical present in ALL foods. Eating foods low in Salicylate eases the symptoms significantly.

For me my stomach pain disappeared completely. I can tell when I've eaten something high in salicylate as the pain comes back immediately! I also suffer bad mood swings and they've eased off (apparently another symptom), my rihnitus is gone (runny nose), my scarily heavy periods seem to be much lighter since I've gone SAL free (coincidence?) and my V seems to be slowly easing off!!

Little happy dance!!!
Now to figure out how to make celery appetising in 50 different ways!!


Last edited by bCherie on Sat Dec 29, 2012 3:55 am; edited 1 time in total

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Butt Clencher

Post  bCherie on Sat Dec 29, 2012 3:39 am

... as an interesting side note... I went back an re-read a lot of your replies to my posts and had a laugh at the butt clenching (I am the queen of butt clench). Strangely now that my stomach doesn't hurt I notice I'm not clenching my butt so much. I think I was over compensating in an effort to stop my stomach taking weight/pressure!!

It sounds REEEAALLLY stupid but until my stomach stopped hurting I don't think I'd actually realised how BAD it was!! I was so focused on the vulvodynia and convinced my vulvodynia was a problem and not a symptom that I wasn't quite connecting the stomach pain with the V (I know I said it would sound dumb!!) ... slaps head!

I'd be curious to know if anyone else has experienced this?!

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