Hello, everyone.

Background:

I'm 24. Though I've had symptoms my entire life, particularly since around age 10-11, I was formally diagnosed with vestibulodynia at 20. I have a whole multitude of other gynecological conditions; listing them all here would take all night and would probably have many of you running for the nearest medical dictionary. (My copays have put somebody through college, I guarantee it.)

I've never been in a relationship to test the theory, but I can assure you without a doubt that penetration is an "absolutely effing not" for me. I cannot use tampons. I had one successful gynecological exam in my life; I had to be heavily sedated, and I could still hear myself screaming in pain. Couldn't walk for three days afterward.

Failed several trials of antidepressants. Low-oxalate diet didn't do jack. Topical lidocaine provides some relief, but not much. My doctor suggests weekly trigger point injections of a lidocaine/kenalog cocktail as the most appropriate next step (after which all she can think to do would be a vestibulectomy). Given my previous experience with a gyn exam even under sedative, she'd have to dope me up but good. She's perfectly willing to sedate me, but cannot do so in the office, and the hospital is unwilling to participate. Even if they were, I couldn't take that much time off work. She's suggested acupuncture and/or physical therapy as adjunct treatments; I'd be willing to pursue either, but definitely can't afford it (no acupuncture benefits on my insurance, and absolutely garbage PT benefits). Frankly, a pudendal nerve ablation sounds ducky to me, but my doc's never even seen one performed, let alone done one herself.

This is ruining my life. I'm in an incredible amount of pain with absolutely no provocation, and there's not one thing I can do about it.

Sorry for the downer first post. I'm just mourning the life of which this absolutely evil condition has robbed me.

Hi hun,

welcome to the forum, i hope you'll find it useful to chat to this motley crew

sounds like you have been through the mill too...got the tshirt, mug and keyring?!

Well fear not! we are here and we'll get through this crap together! have a read through the site and pick peoples brains!

right, im off to bed but catch up soon xxxx

Hey BGM!

Were about the same age so I can totally relate to your post. Listen, youre not being a downer, this condition is fucken shitty!

I had a life prior to Vulvodynia. So I know what life is like without pain...I still remember being able to wear underwear and jeans...being able to bicycle for hours on end. Not anymore sister.

I am on Elavil which helps with the burning and acid sensations...however, I would be absolutely terrified to wear pants these days!!!! omg when I see young women our age in those super tight skinny jeans I cringe and vomit a little. Lol.

Have you tried Dilator Therapy? I have ordered my set after reading about other women on here using them to aid in their Vulva Physiotherapy. Wow, i just realized my life revolves around my vulva...atleast it seems so.


BGM, have you tried the yeast free diet? Its worth a go....trying to cut out all the bad (yet delicious) foods this life has to offer.

Its so tricky treating this because its so difficult to pinpoint the mechanism behind this condition....is it the pudendal nerve or the skin or yeast or something else?????

Anyways WELCOME!

noni

Hey BGM. I just joined this group a couple of days ago and I can't tell you how much I relate to your story. I'm 22 and have also lived with this my entire adolescent and adult life. I am about a day or two away from beginning a yeast free diet and I am hoping it brings some relief. I look forward to finding solutions with you and the other ladies on this site

Hi BGM, welcome hon! You've come to the right place, this motley crew has tried most things collectively.

You probably need to get your pelvic floor assessed and find out what your muscles are doing. Most of us have done this so it is possible. Then you need to work with a physio (PT) to figure out how to unbunch those muscles.

Do you have a pelvic pain specialist or a vulval specialist?

I don't believe in the low oxalate diet, that suggestion came from the successful treatment of one patient. I'd be inclined to ask for a urine test first to see if there was a high concentration of oxalate crystal before taking on that shizzer. In saying that I'm all for an holistic approach ie healing the mind/body and soul. Diet does come into it! A lot of people have gone yeast free. I don't get yeast infections but I have gone sugar free because sugar is acidic and I have the burn 24/7 (mine is generalised unprovoked). It's made a huge difference and so has the physio. I'm also gluten free because I have celiac disease.

Check out Sebbys consultation with Howard Glazer, he has some really great advice and may be worth considering. She did hers via skype.

We are on FB if you would like to come over. It's completely private and doesn't post to your wall..

I hope you are having a pain free day. Take care
Vicki

Hi BGM and welcome to the forum

Dont worry about being on a downer cos we all get that way! I was having one today and nearly burst into tears on the bus.

My Vulvodynia is generalized (although more around the vaginal entrance) and unprovoked but made worse by provocation. I have had VVS I believe since I was a teenager. The first time I tried to use tampons and penetration has always been painful. I have had relationships but the pain issue has blighted my abliity to maintain a relationship and generally fuked with my head. I have now been single for 2 years.

I am currently undergoing biofeedback pelvic floor home training (see my post on my video consulation with Dr Glazer) I got a lot of advice on reclaiming my sexuality (no sex drive so thats bloody hard!) and have pretty much been ordered to start dating again!....something im still putting off due to being scared and dont know where to start!

Have you tried any anticonvulsants? I have been on Pregabalin for over a month. I have only been on the 300mg for about 3 weeks as I had to build up to the dose.

I am also spraying with water after unrination (when I remember lol) and using vaseline as a barrier. I do find the vasline very helpful!

Over the last couple of weeks I have had 3 flare up days (high pain days) which includes today, hence nearly crying on the bus. This is good for me and pain has only been middling on the other days. Im hopefull that the pregabalin is taking the edge off and vaseline is helping the rubbing on my underwear. I will have to wait and see a few months before I know if the biofeedback is working as I think it is far to early

Keep seeking treatments and I recommened some form of Physical Therapy

Take Care

i am 45 and just got diagonoised within the last month after several doctors i had surgery of my vestibular glands and i was fine then it started up again, i am getting frustrated, i was then told to go to physical therapy because the surgery only took care of part of the problem, i did the thereapy the kegel exercises and i was finally sent to a uro gynie and she has put me on estrace cream and i am taking elevil at night this came on sudden last year without a warning, i had an allergic reaction to a antibiotic and broke out in hives ever since last summer i have not felt the same i know i have vulvydina but i am seeing a dermotologist to rule out a skin condition, i also want to know is it possible that the hives caused this condition and is anyone else on elevil or estrace if so how is that working , could an allergic reaction brot this condition on suddenly i really need help and i am glad to be part of this group i also only have problems at night and not during the day that is the mystery and doctors have had a hard time figuring this out, my next and last stop is the demetoligist, i take elevil 25 at night and cream 1 mg- just started and i cant go higher on elevil my body is to sensitive i am having a side effect of the elevil it makes me really tired and i feel groggy , any one have any suggestions of what i am dealing with :

Hi hawkss and welcome to the forum

I too am waiting for my appointment with a dermotologist to rule out any skin conditions.

As for allergies starting it off, I dont see why not. The current theory im looking at is Dr Glazers theory that the pelvic floor goes into a guarding state after infection, injury or irritation (could be allergy?) and that then maintains the pain as it prevents the blood flow to the vulval area that carries the oxygen and healing nutrients. Like when you hurt your knee and it swells up, the muscles and tissues will do the same in the pelvic area but then it just keeps up with the guarding state. I dont think there is a theory as to why it does this?

So I am doing pelvic floor retraining in order to stabalise it and get the healing nutrients back to the vulval area. Its early days yet as the treatment takes months.

BGM, you said you have other GYN problems...so do I ...can you tell me what they are? I don't think vulvadynia always occurs in a vacuum. I have systemic inflammation and autonomic dysfunction. Hawkss, I can sympathize with you, too. I have tried all of these things and none work. I only use lidocaine now. I have been through this for 20 years. I have been in clinical trials. I have been to docs who think they really have the answer. I am so glad that I am a doc, too, so I can critically evaluate the evidence before submitting to anything, especially permanent things. I want to believe there is help out there, but sometimes the evidence just says that certain things are not worth trying in my case. With others, I try them, and when they don't work, I just go back to the drawing board. My worst days are those when I realize it has been 20 years, and it's likely never going to change. I am usually able to pick myself up by my boot straps and get back to hope....but, boy is it tough after all of these years. I do keep hope though. It is in my nature. There HAS to be an answer. No physician knows it yet, but it is there. As long as we keep researching, eventually we will find the answer. I just hope it is in my lifetime.

Hey ladies,

I actually had my Vulvar Derm appointment yesterday with a specialist. Unfortunately, I feel like, yet again, nothing was accomplished. I was essentially told to just continue taking my prescribed Elavil, maybe up-ing the dose. Doing some clenching "downstairs"....?? And other things I am already doing...dilators, etc....so nothing I havent read or heard.

Honestly, im just very frustrated. These doctors have no clue what this is doing to our lives and how it infiltrates so many aspects of our lives. Dont get me wrong, I am an optimist....but some things are unavoidable withthis condition...such as moments of deep depression, hopelessness, and anger (why me syndrome).

I just wanna say...ladies do not put your faith or hopes in any appointments or doctors!!! They can only do/help us so much! For the most part, they dont know very much...or just regurgitate studies or clinical trials...etc. That is my personal opinion atleast. Each one of us just needs to find something that eases our condition and lets us live a relatively normal/productive life.

I will be trying the physio part of this...as I am already drugged up....so I can check that off my list. Haha

Take care ladies.

I am happy we have eachother!!! It is only us ladies who TRULY know what this condition is all about!

Noni *hugs*

My sympathies. I've been through it all, too. Way, way too many doctor appointments...none of which have ever yielded any help to me except for the one where I was given the Rx for lidocaine. Studies say that occasional women are helped by all the various options we know about. So, I guess we should all try each of them and hope from the best. But, when you get to the end of the list and none of them have worked, it doesn't make sense to go back to the doctor until something new is found. Why sit, wait, miss work, miss life, be tortured on the exam table, and end up disappointed for nothing? Since I am a doctor, I feel perfectly ok in saying all of this. I will certainly let you all know if I hear of anything new and promising. Best of luck to each of you.
Thanks.

Hi Guys

Im currently doing the Glazer protocol of biofeedback and pelvic floor exercises. I will give an update on the treatment in about another month. It can take between 6 - 9 months to have full effect.

Thats what Im hoping this forum can do, we try treatments and can pass on knowledge of others. Whether the treatments work or not or how much and what difficulties or side effects there were.

Of course I have no doubt that different things work for different people but at least we can gain some sort of case study body of knowledge here

Sebby thank you for this.

You are absolutely right...we need feedback, updates, and input on this forum, as much as possible!

We need to help one another, emotionally and otherwise!

Hugs,
Noni