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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 …

Comments: 3

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 …

Comments: 1


21 years old, Self diagnosed, have had for 5+years

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21 years old, Self diagnosed, have had for 5+years

Post  fleshmannequin on Wed Mar 27, 2013 5:58 am

My story is sort of long, but hopefully someone will read this! I really just want to get support from others, and know that I'm not crazy and alone in this suffering!!

I'm 21 years old, and I've had what I think is vulvodynia (and possibly vaginismus) for at least almost 5 years. On some level though, I think I've had vulvodynia my whole life. When I was very small I would often complain of vulvar pain (with no physical cause) and had trouble with bubble baths and riding bikes, etc. Things got worse when I became sexually active nearly 5 years ago. Right before losing my virginity, I started to get horrible stabbing pains in my vaginal opening that would stop me dead in my tracks. I went to a gynecologist and couldn't complete the exam. She was very forceful and uncaring and it was horribly traumatic to me (I think this started my vaginismus). During the next few years, I was treated for several vaginal infections, even though later I now realize it was probably just the symptoms of vulvodynia mimicking bacterial vaginosis and yeast infections. So naturally, none of the medications worked, of course. After months of attempted to have sex, I finally was able to. It was not without pain, though. Only once in my entire sexually active life have I had pain free sex (right after I was able to have intercourse for the first time). I have had a few partners and many sexual encounters since then (due to long term monogamous relationships) and have had severe pain with each partner and each time. The pain varies with each time, sometimes I have to stop sex immediately and I literally cry in pain and have to sit on an ice pack to relieve the intense burning and stabbing pain. Other times, the pain is tolerable, but it is always there no matter what. It feels like my vagina is on fire. It is the most uncomfortable feeling. I have also developed urethral burning within the last year, that comes and goes without warning and leaves me huddled up in tears. I have found relief with a perineal wash bottle that I spray on my vulva, and it seems to help a bit but not for long. I am so depressed that I can not have intercourse, it is so emotionally and physically painful for me. None of my partners have been that caring about it, or tried to do anything about it which frustrates me. I am so hopeless at the thought that I will never be able to enjoy sex, and I will always have this fear in the back of my mind. Not to mention, I hardly have sex as it is due to the pain, and I still have sometimes debilitating pain on a near daily basis. Pants are even becoming uncomfortable, and underwear too. Everything feels scratchy and like it's rubbing me raw. My vagina always looks red and feels tender and hot. I'm at a loss of what to do, doctors can't help me at all. They keep doing cultures and saying everything is negative and they can only recommend sex counseling, which is not covered by insurance so it's out of the question for me. I believe I have vaginismus and vulvodynia together. (Perhaps the vulvodynia caused the vaginismus, due to fear of pain?) and I find myself crying so often due to the fact that I don't feel like a woman. I feel guilty as a partner that my boyfriend is now scared to have sex with me due to my constant pain. I'm so worried sex will one day be completely out of the question for me.. Can anyone give me any words of encouragement, or hope? Or has anyone found any relief, even if its just temporary? I'm at the end of my rope...
thanks guys!

fleshmannequin

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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Alana3 on Wed Mar 27, 2013 11:24 am

Where are you from? This all sounds like me except mine was provoked not unprovoked like yours sounds. Im considered cured now but I had surgery to get that way. My advice is to not go crazy and try a million "cures" at one time but try one thing and if that doesn't Work go onto something else (after several weeks). A vulvodynia specialist is probably your best bet and you can either go on the nva website OR go to google type where your from and vulvodynia specialists and see if any are available nearby. There is hope im proof of that but you won't be considered for surgery until you exhaust a lot of stuff first (a lot of people aren't considered ever) but there is a lot of stuff you can first and try and get your v to feel better or go away Smile you'll be fine it just sucks waiting to get "cured"

Alana3

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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Loulou on Tue Apr 02, 2013 9:45 pm

Hi fleshmannequin

Its awful to hear that you are suffering. This is a horrible condition but don't let it beat you. There is hope - several people have posted in this forum about their successes and their cures have varied (e.g. physical therapy, surgery, elimination diets, antihistamines) so keep looking for your solution.

You say that you think you've had it your whole life - so have you/your docs looked at things you might have been born with like allergies or structural problems (in your vagina or pelvis - is everything where its supposed to be, the right size, with the right level of mobility etc). If you were born with extra or hyper sensitive nerves in your vulva then maybe medication (eg amtryptiline)and desensitisation through use of dilators could help? Last resort for that would be surgery. What i'm trying to say is that there are lots of potential causes, and therefore treatment options, to consider (sounds like your docs are trying to say its all in your head hence the counselling suggestion). Its NOT all in your head! I agree with Alana - find a vulvodynia specialist and don't rule anything out without exploration first.

I would guess that some of your increasing pain may be due to tight muscles thru tensing and guarding against pain (i agree with you that the vvd pain might be causing the vaginismus) so definitely get a physio to check you out for trigger points in your abdomen, bum, thighs and, if you can get to see a women's physio, pelvic floor. Releasing some of that tightness might provide some relief but you still need to get to the cause. And sounds obvious but have you tried some relaxation/meditation techniques to help you with feeling stressed/anxious? I know my pain used to feel worse when i was stressed.

For immediate pain relief you could try cold packs or lidocaine ointment. I found accupuncture helped with my pain in the early days so worth trying if you can.

You're only 21 but don't be intimidated by the docs. Do some research here and on the web, arm yourself with info and push for a vulvodynia specialist. There is definitely a treatment option out there that could help you.

Loulou

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Re: 21 years old, Self diagnosed, have had for 5+years

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