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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

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: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

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: 1

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: 3

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: 6


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.
 

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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