New member, feeling very down

Hi everyone,

I'm so glad to have come across this forum. I have had a year of absolute hell with vulval pain which I had convinced myself was an STD after I had slept with someone a few times (protected). I had had a number of symptoms from small ulcers, cuts, but mainly sore skin around the vulva and anus.

I have visited the GUM clinic 5 times within the last 6 months, and have gone this morning too. The doctor has told me to research 'vulvodynia', as I explained to her the trauma I experienced with my ex boyfriend a few months before all this started. My current partner is supportive, and patient when it comes to sex. Yet, i cannot help but feel guilty for the lack of sex and feel although he is patient he is unaware of the pain I am going through. The GU Doctor suggested previous upsetting experiences can cause pain in different ways, which I had not even thought of. She mentioned going on anti depressants, but first told me to go away and think about the causes for my pain.

As you can imagine, a million thoughts had gone through my head and I had convinced myself I had herpes as my pain often got alot worse after drinking alcohol, however after 2 negative swabs for HSV I am none the wiser. I am sure many of you feel my pain and frustration, and I hope at some point I can feel ''normal'' again.

Thank you for reading,

Libby xox

Hi and welcome. I totally relate to being convinced it's some kind of infection, I was too for the first few months. As for trauma causing pain it could well be you tense your muscles when stressed or upset (I do) and you're clenching the pelvic floor or something on the pelvis like the glutes perhaps? Anyway, have a look round and feel free to discuss anything with us girls.

Hi Libby,

When I read your Topic you reminded me of my Journey with the dreaded V. I have seen them all Gyne, Urologist, Hormone specialist, Dermatologist. I seen most of them private and none of them really came up with any answers, I had a Biopsy which didnt show anything with a leading professor who is an expert in all vulva conditions. They all recommend Antidepresants for pain modulation. After seeing all these so called experts I was in agony and rang the Vulva helpline I was desperate sitting on ice couldnt walk my life was over as far as I was concerned, she suggested I go to my local GUmed, so I did and never looked back, they are fantastic. I also contacted Howard Glazer and I do the Biofeedback.

Libby you need to control the burning AVEENO helped me and Bicarbonate Soda in the bath. Ice packs I use to sit on them watching TV cools everything down. My big mistake was I thought it was my skin as the vulva was red swollen and just so sore, I had a yeast problem also. Libby the GUmed gave me lots of Medication for yeast and they took all blood tests checking everything even my thyroid, and of course you can go anytime without waiting if you have a problem.

AT the moment I am doing ok I do lots of healing on myself I am a Holistic Therapist, Hypnotherapy is great for relaxing the pelvic muscles, also as its nerve related I visulise blood flowing to the nerves calming them down and making them better.

Your Husband is right I use to say Why the hell cant the doctors tell me whats caused it, and cure it. Libby I use to sit outside no underwear on regardless of the weather ( UK) letting the air cool everything down, good job I have a private garden.

My advice is dulling the pain first, then work on how you feel and if your not happy Libby go and see someone else at the GUmed until you get the help you need, I saw two Doctors before I hit on the Doctor who helps me. I also got a referral to the Vulva Clinic so they both look after me.

Hope this helps there is sooooo much to say this is a hell of a Journey but you know I am going to get rid of it and so are you,the Dermotologist I saw told me to buy a bottle of wine......... and charged for the pleasure. Another Dermotologist told me I would always be vunerable to the V well I am going to prove her wrong its gonna go away.

Hope this helps and you feel better, try everything and anything shout scream sing dance I have done it all do whats best for you.


Ria

Hey Libby,

Im sure you have read our many posts on here....well yes the jouney is difficult for all of us...but this is a very supportive group of ladies on here. Its a great place to exchange ideas.

Im on Amitriptyline. And although I feel "better" I cannot say that I am 100 percent or that I feel "cured"...and put "cured" in huge brackets! It took some time, but I have let go of the notion of totally ridding myself of this...if I get even partial relief I will thank jesus and my lucky stars.

If I never wear a pair of jeans or trousers again I can totally live with that. I cannot however live with the inability to walk or sit. And theses days I can do both pretty well...so I am happy with that.

The constant inferno betwenn my legs has subsided on Amitriptyline. However, as sarah mentioned...rawness and soreness are still there. The drugs we ladies take for vulvodynia (generalised) mainly help for burning...not soreness. I cant really figure out the soreness......???

Im slowly but surely trying physio and diet modification...but I cant let go of chocolate. And coffee soemtimes...well, im only human!

Theres something called the low oxolate diet...didnt try it, didnt need to. Way too many banned foods on that list.

Take care!

noni

I really dO appreciate and thank you all for your lovely kind words, it's suprising what can lift your mood when feeling low. I too have doubts that this will never be cured and the thought of going on anti depressants to be honest makes me feel a little uneasy. Noni, the soreness you speak of is particularly relatable to me. I also suffer with itches sometimes, but certainly experience redness and sore skin. This is greatly worsened by alcohol which as a 22 year old is not ideal, student lifestyle isn't meant to be t total lol. I used epsom salts for a while when I convinced myself I had contracted herpes, which didn't offer much releif. I am hoping this will all subside one day and I can have a normal life, here to wishing hey!! Libby xo

Hey again Libby,

Well I can relate im 23 and feel 50 somedays...
I have shown my genitals to doctors more times than I care to say. This condition has totally set me off my trajectory...I had plans before all this. But, now, I need to focus on getting better...those other things will come in time.

Libby, just focus on getting better and self-management for this condition...in other words, do everything in your power to feel better. But dont wear yourself out in the process. It takes time to heal. One baby step at a time, I say.

I no longer soak in baths...just simple showers. Its a personal preference...dunno if it has any benefits....but in the beginning of my saga I was told to take sitz baths blah blah blah blah...All BS as far as im concerned...sitz baths do f*ck all for vulvar pain...atleast for me. To all those smart ass Nurse Practitioners: Sitz and tea baths do s*it for an inferno between ones legs!!!!!

Im horrible at diet modification...even though I am on Amitripyline I still binge on chocolate and chips.....a terrible combo since Ami causes ...well, it slows down your digestion...making going to the bathroom difficult, and painful. T.M.I. (i know)

Most docors know jack about this...and the ones who do...well, we actually know way more than they do.

Well, im sure you have done the crotch research by this point...and by that I mean countless hours spent on google searching up stuff on vulvodynia.

So, hopefully you can find a doc to help in the meds side of things and try physio...dilators...etc etc

Take care!

Noni

Hey Libby, welcome!

Don't get side tracked with the drugs being "anti depressents", it's a really low dose to treat neuropathc pain. This pain is not in your head but you register pain in your head. I hope that makes sense. The ideal behind them is they re-route the pain messages. The key is to keep trying. Drugs dont work for everybody but they may work for you. I was really reluctant and not a great candidate as it turned out but they do work for some people. Women post on here all the time saying their pain has decreased significantly with methods that others have tried with no joy.

Good luck. I'm all for the diet modification, it makes more sense to me to take control of the things you can.

Take care. V.

Vicki...I have a question for you...do you still drink coffee? I remember you posting somewhere that you still have the occasional cup....but I find when I drink coffee (and I love it) I get some unpleasant symptoms...

Is it the caffeine or what?

thx.

Yeah i understand the whole ''pain in your head'' thing. It's all a bit overwhelming though. I am feeling pretty much sore and itchy constantly, and produce the discharge as if you would with thrush (sorry for tmi). It drives me insane, just feel like if i could round with an ice pack on I would!

Does anyone else get affected by alcohol?

Hey Libby,

Well im on meds and cant drink alcohol anymore...but I could see where alcohol or any other toxic-ish substance would exacerbate vulvodynia symptoms.

Seems like with V, diet and food choices have a big impact.

Basically, anything that brings on more symptoms....AVOID.

Yeah i guess so, its so hard not to go out with my friends though and not drink when they are out having a great time! Does anyone know if when it is possible (not very often) to have sex, that afterwards redness and soreness gets even worse? I constantly get really red after sex it has just put me off all together!

Libby

Hi Libby and welcome to the forum

I can see the girls have given great advice as usual yes you need to reaserch and try anything you think will help and if it doesnt move on to something else..but above all never give up!

I am on Pregabalin (anticonvulsant) it is also used as a neruopathic pain killer just like the antidepressants. I found it helped at first but as I cannot do the biofeedback (from Dr Glazer) at present and I am getting flare ups again. So the dr has put me up from 300mg to 400mg...I imagine I will get the dizziness back lol but it will wear off....currently awaiting a new sensor in the post for the biofeedback machine...just wana get started again now.

With regards to the sex, I believe greatly that the pelvic floor muscle plays an important part. When I was examined at the Vulval Clinic a few weeks ago..the dr said that just touching the entrance of my vagina made my pelvic floor muscle stiffen and go into spasm....its afriad of the pain!!!

Ok with this in mind what we need to do is retrain our nerve endings and brain signals to also see touch in that area as pleasurable...so lots of light touching around the clit area at first, use lots of lube if needed and buy your self a vibrator! Seriously part of my treatment prescription is to become sexual again! So rather than your brain processing any kind of touch in that area as just pain...you want it to start remembering the pleasure so we need lots of orgasms!! Dont rush into penetration if you cannot do that at present. The more you can relax and start enjoying what is called "outercourse" the more able you will start to feel to try intercourse..

Well thats my plan lol and Im gonna put it into practise try not to feel guilty about the intercourse part..men love being touched, kissed & excited in other ways.

I understand the whole suffering after sex part..yes we get more sore afterwards even sometimes when we have only just tried "outercourse" but remember it eases off and hopefully the more we start to associate it with pleasure the more relaxed we will become and the less pain after...

The only way to test this theory is to give it a go.

Remember only start with light touching etc..dont rush it all guns blazing!!

Good luck

Yes i've received loads of good advice which i'm so grateful for!

My partner is in Iraq at the moment, I was hoping to get this sorted by the time he gets back... with this diagnosis that's not gonna happen. I think i'm gonna try the amitriptyline when I have my next appointment..anything is better than feeling like this!!

Hey Libby,

I think the thing with the drugs is you have to build up the dose. So if you are going to give them a try GET STARTED woman! I put it off for months.

Noni, I find coffee makes me so much worse! I'm having a shit time at the moment. Kind of all over the place. I'm working so drinking more coffee, have more stress and the odd bit of sugar. I really can't seem to get back on top of it. I have this odd twitching in my face, burning hands and feet and loads of the creepy muscle pulling stuff going on down below. With the burning pain. No meditation for ages either! Grrrrrrr!!! Does anyone else have the pain where it feels like your pubic hair (I know but who waxes these days) is caught in your underwear? Love that.

Hello lovely ladies
I gave up coffee this week and after a long and hard struggle with the caffeine fiend in my brain I think I've won. So far I haven't noticed much of a difference down there, but I am going pee waaaayyy less so I figure that will lower the irritation of urine/toilet paper over time, at least.
Vicki I know exactly what you mean about that feeling where hair down there is getting pulled by underwear. Sometimes I think maybe that's what is happening, except that the next hour or the next day I don't feel anything, and nothing's changed. Or I'm not every wearing underwear! So annoying!
Don't beat yourself up too much for falling of the bandwagon a little. We're supposed to do so many things it feels impossible. Just start with something small again

I sometimes think about giving up alcohol, because even if i drink a glass of wine around a day later I am sore for days. It really is such an irritating problem. The doc at the GUM clinic said she can refer me to a vulvar clinic but the waiting list is months and she said because she cannot see much physical reason for me to be in pain (besides redness) then they won't be able to do much either. I really am so glad to have found this forum as I feel as if I was physically and emotionally drained because of this condition, I find myself crying every day because of the pain and what worries me most is there doesnt seem to be a cure

I tell you what I've found helpful recently, reading the book "When Sex Hurts". In the book it basically pooh poohs the vulvodynia diagnosis because it doesn't actually mean anything except pain in the vulva and doesn't tell us why and suggests an attempt to find out what is actually causing yopur symptoms so a course of treatment can be sorted out. So in my case with my extremely tight pelvic floor I actually have a hypertonic pelvic floor condition causing vulvar pain which means I can work to get rid of it. Lots of women do recover, some post in various places online if you actually seek them out but I'm guessing the majority don't post and just get on with their lives. Of course there are lots of women who say they've tried everything and nothing worked but when you actually talk to them in depth they haven't tried lots of things so again those women could go on to recover if they do try the rest of the treatment options if you see what I mean. I highly recommend that book as a way to try and uncover why you have V and start treatment aimed at your particular cause. My GP is exactly the same as the author and is astounded doctors get away with using the word vulvodynia as a diagnosis when it's nothing of the sort. You must not lose hope, try anything and everything and remember there are women who have recovered.

What Sarah says is so true. Keep trying. I am on Amitriptyline and was doing well until, well, tonight...I had the same old burny irritated pain...I just dont really know /understand this pain. I can understand pain when there is an obvious cause....but getting pain from nothing really bringing it on???

Im gonna try the physio ....I dunno. Red/raw skin from muscle tightness???? Im so baffled. Was it something I ate???

This sucks.

Hello Libby,

May I suggest something for the irritation / rawness around the vulva and anus. Bepanthin - nappy rash cream, soothes and doesn't have nasty chemicals in it. Watch out for anything with propoglcynol (spelling sorry) and parabens, they are nasties. Aveeno wash helps soothe too.

After sex the best thing is to jump in a cool bath with bicarb soda, I find, and then I just drift off to sleep and the burning is gone in the morning. With sex I find it is really important to be completely turned on (I use a vibrator myself before hand because on some days different places hurt and it is difficult to explaining this to hubby) I also use olive oil as lube. EVERYTHING else irritated me but not with this.

Coffee is nasty for me sends the burning in hands and feet. I would avoid it if I were you.

Alcohol - straight alcohol (has less chemicals) is better than wines and beer - definatly no beer. It sounds to me like you still have a yeast issue. Ask your doc about long term oral antifungal. It took me 6 months to get them because of the risk of liver damage so finding a doctor that agreed it’s red raw inside was difficult, but now that rawness is much much less. I am even wearing jeans to a concert tomorrow night

Get to a physio too

Hope you find support on here, I am sure you will everyone is lovely. And it is nice to talk with people that get it, this is difficult in your early 20s (like me) when friends are partying and sexing lots.

Claire xx

thanks for your support and help.

do you mean straight alcohol as in vodka and gin? I find wine really unsettles me. Even one glass and i'm suffering for days afterwards. really awful.

i purchased some bepathin today so will try that tonight, although my OH is still away so I'm not what the sex situation is going to be like, he's been away with military for 2 months and i feel pressured to give him great sex when he is home as i promised i'd get it sorted whilst he was gone.. I feel in a way i will disappoint him as I know it will be uncomfortable.

i've also arranged to see a physio, and have been washing with aqueous cream. Still not really feeling any better tho.

Lib x

I stopped drinking over 12 months ago when I started on antibiotics at the start of this whole thing, and I really miss it sometimes, but coffee has been harder to avoid when I leave the house as a good coffee is one of my very favourite things! But it seems lots of you think it may help so I'm willing to try again. I've also been trying to kick my sugar habit but that's almost impossible so far as sugar is in almost everything (reading ingredients lists has become my new hobby)- does it really make a big difference?? Like most of you I'm happy to try anything at this point!

Xylocaine cream helps me the most during intercourse. Although when it is red raw on the outside this doesn't help. I have come a long way since not even being able to touch it down there. I can't have sex at all without the Xylocaine cream. It is cocaine cream which numbs the area. I Started with a hell of a lot. now i just need to take the edge off. Which means I can feel intercourse pleasure now. However about 12 years ago when I was diagnosed with this condition I was red raw and this cream didn't help that. I also suffer from IBS and recurring candida thrush which is like acid. I make this better by Eating mostly gluten free foods, not too much chocolate or dairy. I limit these foods take magnesium phosphate which is what controls our nerve endings. Also Zinc helps with wound healing in the body. All this helps but if i go off any of it for even a day then I suffer. x
Melanie

Hi Sebby

Can you tell me which Vulval Clinic you went to in London please? I'm struggling to find a clinic near me so London is probably the best bet.

Thanks

Great advice from all these wonderful survivors of V. Libby, I am all about the meds. I will take ANYTHING that will reduce my pain and discomfort, I am on Gabepentin, Lyrica and Cymbalta. I also was prescribed Percocet (pain med) to take 3 times per day. I was referred to a pain clinic and that's where i got the most help. I also do acupuncture once each week and i think it is helping my pain. I haven't tried Ami. But, i have heard it has helped many women. I have had 4 nerve blocks in the spine...none helped. I also did Physical therapy and it only made it worse. I have generalized V....pain all over my vulva. My pelvic walls are in pretty good shape...i have taken a break from P.T. At one point, i thought alcohol did make my pain worse so i cut back and tried diff. types of liquor. I am now drinking again and don't notice it is hurting me. I sit on a donut (cushion) EVERYWHERE. I even carried it around in Las Vegas because i can't sit on a damn chair w/out my pain increasing. In Aug. i am having surgery to have a nuerostimulator (wires and battery) implanted in my spine. I will have a remote control to control vibrations sent to the nerves. Its supposed to interrupt the message of pain to the brain. For me, it's kind of a last ditch effort because i have tried everything else. I can work and workout somewhat (yoga, pilates etc). I couldn't do any of this before. I do still have pain, but it has been reduced a lot as a result of my meds...primarily Gabepentin and then that w/ lyrica. my lyrica was recently increased at my request. it's a wait and see. there is a lot of help out there. diff. things work for diff. people.

Hi Kay star, I saw Dr Karen Gibbon at Whipps Cross Hospital, Whipps Cross Road, Leytonstone, London E11 1NR
020 8539 5522 - for me it was mainly to rule out any possible skin issues. Ask your GP to refer you directly to her.

I was very impressed by her caring and knowledge. She is a Vuval Dermatologist but she does know a wide variety of stuff about Vulvodynia

She bascially told me to carry on with the Pelvic Floor Biofeedback and Pregabalin (She knows Dr Glazer!) When she examined me she said there was no skin disease but that my pelvic floor muscle was going into spasm. That helped to confirm for me that I was going down the correct road of focusing on my pelvic floor.

Another forum member has been to see her and has reported that they feel like they have more hope now so I do recommend her.

I dont need to go back and see her again and my Pregabalin is under the care of the GP but I would asked to be referred back if i developed any new symptoms or if the biofeedback didnt work for me.

Give her a go and see what she can do for you