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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, …

Comments: 9

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 …

Comments: 5

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 …

Comments: 0

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 …

Comments: 4

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 …

Comments: 7

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 …

Comments: 10

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


I'm back - advice on treatment and biofeedback

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I'm back - advice on treatment and biofeedback

Post  Tyger on Thu May 03, 2012 4:13 am

I just wanted to jump back on these forums, because finally I'll be pursuing treatment (again!) and I need some advice and reassurance.  

I wrote my history so far in this thread: http://www.vulvodyniasupportforum.com/t362-my-story-my-experiences-my-life-with-vulvar-vestibulitis, but in a nutshell, I'm almost 28, I live in Melbourne, I have provoked, localised vulvar vestibulitis.  Basically, it hurts when I have sex, the whole way through the act and I am tender for a day afterwards, and it stings slightly when I pee.  I have suffered from this since I was 18, and had pain-free sex for 6 months before it began from a yeast infection.

I should say that I'm really good at ignoring this condition, and being in denial about it.  When I was seeking treatment after first diagnosis, it made me so depressed focusing on it, so after some failed attempts, I stopped.  I grit my teeth through sex and get on with it, and then don't think about it the rest of the time.  This has gone on far too long now, and what used to be a healthy sex-life is now turning into a boring, painful mess as I get older and more fed-up, and my libido slows down.  I can't just keep ignoring it.  The days where I could enjoy sex and embrace the pain are gone - this is not normal.

Treatments tried (and failed) in the past: long-term anti-fungal called Nizoral I think, and Amitryptiline anti-depressant, for months slowly increasing dosage.  No response to either.

I have been reading a lot about biofeedback.  I always assumed there was some kind of medication I could take that would fix it, if I tried enough avenues, and I thought biofeedback was such a wishy-washy treatment. But now that I look into it, it seems there's something to it.  I didn't think I had problems with my vaginal/pelvic muscles, but my partner has told me over the past few years that I'm extremely tight down there. I should have assumed, from common sense, that I'd be experiencing reflexive muscle tightening because of the sex pain, and I don't know why I thought this wasn't an issue.


So I suppose my questions are these.

Have you had success with biofeedback and dilators, especially with localized provoked?

Have you heard of/had treatment with Marek Jantos, and are his methods effective?

How long does it take to start experiencing progress?

What exactly IS it? What do they do to you?

Is biofeedback/dilators a good fit for somebody with vestibulitis, or should I seek more medication-based treatments first and foremost?

My biggest issue by far is financially... these treatments are all extremely costly in Melbourne and probably all over the world.  I'm going to go back to full-time study next year, and I don't have a lot of savings, plus I already asked and a lot of the specialists aren't covered by any form of private insurance.  I wish there was some kind of guarantee that this stuff is going to work!

But I'm desperate now, and I have been extremely upset the past few months.  I can't ignore it any more.  Any advice would be greatly appreciated! I'm so glad there's support like this out there... I don't know where I'd be without it in the past.

Tyger.
 

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Re: I'm back - advice on treatment and biofeedback

Post  Sarah001 on Thu May 03, 2012 12:08 pm

I've done some biofeedback, basically they insert a vaginal probe (or you insert it yourself if you prefer) then wait a minute or two to see what your resting tone is followed by testing how well your slow twitch and fast twitch fibres work by giving you quick and slow contractions to do with the emphasis on the relaxation part to teach you how it feels to have the pelvic floor relaxed. Once you can relax it better they progress to exercises to suit the individual and go from there. That should also be followed by trigger point work of the pelvic floor to increase relaxation. I can't say how well it works because I have severe pelvic instability so have to stabilise my pelvic before I can fully relax these muscles but I did manage to lower my resting tone by quite a bit and it took my generalised unprovoked V towards being provoked at the time so there's something to be said for it.

I know Aussie (Claire) went to Marek Jantos and made progress with him but I'm not sure if she's still around or not. There's no reason why you can't pursue medical options at the same time either.

Dilators are to gradually stretch the superficial pelvic floor and if I use mine religiously I do feel improvement but again I can't go mad because of my pelvic instability. I leave mine in place for about 15 minutes before I go to sleep at night and I'm currently on the 3rd dilator but with no movement. They can also be used to stretch the pelvic floor and press into trigger points but again gently and gradually.

Let us know how you get on!
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