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» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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DR GLAZIER

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DR GLAZIER

Post  ria on Wed May 11, 2011 10:38 pm

Hello Ladies,

I have been seeing Dr Glazier I do the Biofeedback for dysesthetic vulvodynia. He advised not to use anything on the vulva skin other than olive oil. When I first started with this 4 years ago I was using allsorts of cream from the GP for yeast the skin was sore and the vulva was swollen. Now I do not use anything when I get the burning its not the skin but the nerves it so hard after all this time to get use to the fact its the nerves as you always want to put something on the skin when its burning or itching.

Again I feel you have to use allsorts of treatments at the same time. So I use Biofeedback, Hypnotherapy, Reiki and medication not one thing on its own works, diet and meditation and prayers. Just thought I would write what I do as if one thing isnt working try several others at the same time.

And you know what Ladies we will beat this one way or another as we have each other and all information is helpful.

I live in the UK no one really rates the Biofeedback here when I mentioned it at my vulva clinic but hey I still use it and work with myself on what I feel I should do. Remember we are the experts on this not the Consultants because we live with it everyday.

United we will crack this between us lovely ladies

Keep Smiling

Ria
Laughing Laughing

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Re: DR GLAZIER

Post  noni on Wed May 11, 2011 11:17 pm

Hey Ria,

I really appreciate your post. I can relate to so many of the things you have mentioned.

I too am throwing several things at Vulvodynia. Dilators, Amitriptyline, Diet changes, etc etc etc

Its also very difficult for me to get it into my brain that this is a NERVE ISSUE not a skin issue. Im so tempted for topical solutions...yet I know that it will do me no good. I still have minor redness and swelling...however, nothing so alarming as to require a biopsy. And I have seen many doctors for this...several dermatologists....and none recommended a biopsy at any point.

But unfortunately this is a nerve issue...as my pain fluctuates and moves around a bit. Its random at times.

Its frustrating. None of us ladies derserve this crap.

Ria, does stretching work for you? What about yoga?

Im at the point where I can no longer wear pants and even underwear is only a must on my period.

Sending love to you all,

Noni

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Re: DR GLAZIER

Post  Sarah001 on Thu May 12, 2011 11:27 am

How long have you been doing the Glazier Method Ria? Just curious. I too find my vulvar specialist is not interested in talking about the pelvic floor either and if it doesn't involve tablets she doesn't want to know. I did get advised by a GU clinic to look at my pelvic floor urgently though as they've found alot of women find it helpful and the consultant noticed I had very tight adductors when she examined me, and my GP is also interested in that angle too so it just seems to be the UK specialists who are not interested. Are you using Dr Glazier's home unit?

I use vaseline on the skin or one side of skin rubs on the other and makes things alot worse, I tried using nothing but the pain flared up badly so had to go back to vaseline. Oils make me worse for some reason. I do deep reathing exercises to relax the pelvic floor and self hypnosis to keep me calm (I'm a trained Hypnotherapist so self hypnosis is a doddle for me!). Ami 50 mg and Pregabalin currently at 200mg daily aren't helping much so I think I need to up my Pregabalin dose. I find it odd though that medication for nerve related pain doesn't help alot of women and it should really if it's nerves.
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DR GLAZER

Post  ria on Thu May 12, 2011 12:05 pm

Hello Ladies,

First and foremost I am a Holistic therapist I have tried everything spent a fortune on seeing consultants privatley yes here in the UK
we have NHS but if you want to see specific Specialists you pay. When I went on this journey I was misdiagnosed told I had Lichen Scelorosis so I went on the net to seek out an expert went to see Professor Reid who did a Biopsy couldnt find anything wrong except an yeast infection she treated me with Kentoconzole, when the pain continued she didnt know what to do and suggested Amitriptyline well at this stage I had had the problem for 18 months and coming from an holistic background I thought I would try everything. Acupuncture and Hypnotherapy which I am trained in, still burning still pissed off sorry but I cannot believe the people I have seen and the money I have spent. So I made an appointment to see John Williams who specialises in vulva problems in America, I could not get on the flight for the burning I was buying cold cans of pop just to sit on had to come home and cancel appointment. So what next I thought seen 10 leading consultants in there various field urologist, dermotologists , gyn, all told me to take the TCA Ami which made me tired and like a zombie. So ladies my journey then took me to my GUMed clinic couldnt believe I was making appointment as I believed this was for sexual health, well let me tell you if you have ANY worries about yeast itching discomfort go to your local GUMed they are fantastic they check everything all blood test done they are very good checking everything and here in the UK free all medicines handed straight to you. CONT!D

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DR GLAZER

Post  ria on Thu May 12, 2011 12:23 pm

Hello Ladies

Well the Saga continues as I am being treated at the GUMed still burning I am sent to the Vulva Clinic in the meantime I am seeing Dr Glazer on skype and purchased the home biofeedback went to my appointment told my consultant about Biofeedback he said waste of time the only thing it will do is give me a strong pelvic muscles, didnt listen to him carried on with the Biofeedback 20mins twice a day Dr Glazer said it rest the muscles. So now I am on Noratriptyline doing fine 75mg a day. Also went to see Hormone specialist and went on Bioidentical Hormones, started to look at creams I was using anything with polyglyco in irritates the skin, and of course alcohol a Nooooo Nooooo which is in alot of creams lotions ect. Dr Glazer said not to take any medication as the Biofeedback would take it away, well it never, and I used both and other things as mentioned.

My take on this is dont spend a fortune because they all say the same pain medication 6 months then taper it off. Well where am I now had a reaction to the noratriptyline so had to stop taking it, so now I am on venlafaxine went uptp 150mg a day but aches and pains in muscles made me go down to 37.5. I have not tried Gabapentin but studies I have looked at say they get good results with nerve pain, I am waiting to see consultant I may try this next.

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Dr glazer

Post  ria on Thu May 12, 2011 12:34 pm

Hello Ladies

Back again Very Happy Very Happy Well my next focus is on the mind when I get the Sensation stopped calling it pain I welcome it as pleasure I know you think I have lost the plot but mind over matter Very Happy Very Happy Very Happy Yoga I do everyday and I am a Reiki Master so I give myself Reiki, and tell myself IT CAME FROM NOWHERE IT CAN GO BACK TO NOWHERE. I often wonder what connects all us Ladies to having this there must be a common denominator? Dr Glazer said not to put anything on the vulva or vagina you could not eat NOOOOOOOO not ice cream Laughing Very Happy Laughing olive oil as its pure. So I have had a good old rant sorry if spelling wrong or punctuation just keep letting it out on the keys. I have burning discomfort with underwear on or off it makes no difference so I wear it and cut the gusset out of leggings or tights, wear boyfriend jeans from allsaints they are comfy.

Hope this helps as I say I am studying this subject and should get a degree at anytime soon bounce bounce bounce I could think of other things to think about.................................

Lovely ladies I wish you all well on this tiresome road but hey we will get there Laughing Ria

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Re: DR GLAZIER

Post  noni on Fri May 13, 2011 1:18 am

Hey Ria

What exactely is Reiki? And how does it ease your pain?
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REIKI HEALING

Post  ria on Fri May 13, 2011 12:51 pm

HELLO LADIES

Reiki is a form of healing working with energy please look it up on the web it has helped me no end. As a Reiki Master/Hypnotherapist the therapys help so much to heal the mind body and spirit. It does not matter what religion you are.

I believe we have to heal ourselves but we also need medical intervention. If you look up a Reiki practitioner make sure they are registered, there are many books written on Reiki, I would suggest you book a session and maybe even go on the courses I am so pleased I had this before I started with the vulvodynia.

Smile Ria

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Re: DR GLAZIER

Post  noni on Thu May 19, 2011 10:26 pm

Do you need a practitioner to perform Reiki? Or can you do it on your own?
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DR GLAZER

Post  ria on Fri May 20, 2011 3:20 pm

Hi Noni,

You need a practioner someone you connect with. Reiki works with energy and it heals the mind body and spirit, I have been a practioner for ovr 10 years thank God I had it before the nasty V came along. I know some beauty therapist do it in salons but if I was you I would go to someone who works with energy on a holistic basis, be sure it is someone you like, you wouldnt go to the hairdressers and let them do your hair if you did not connect with them, treat it on the same basis. Do your research on line and there are many books on the subject.

One thing I have learned on this journey is the mind must remain strong.......... Oh I know I have been there where I did not want to continue living with this hell of a condition No No No No No No No No No but we have to each day is a new day and healing takes place each day, if our minds are not strong the body will not heal itself I have always believed this Noni right from an early age.

Do your research and give it a go Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Let me know how you go on, we have to use many things to get well this is just another weapon on our road of getting better


Keep Smiling

Ria Very Happy

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Re: DR GLAZIER

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