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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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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: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

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

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

Weaning Off Steroid Cream - Need Advice

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Weaning Off Steroid Cream - Need Advice

Post  emalita on Wed May 11, 2016 5:55 pm

So, I chose to get a 3rd opinion on my lichen sclerosus (LS) diagnosis since I had seen an OBGYN who had a special interest in dermatologic diseases of the vulva who said I didn't have a skin condition, but my AZ specialist said I had LS. This new OBGYN I went to see (Dr. Kathy Hartke at Froedtert) who apparently treats LS pretty regularly and is familiar with it said that there was nothing visible that would have warranted an LS diagnosis. She said there is no area of my vulva that she would even want to biopsy at this time to even look for LS (the appearance of my skin did not change since the LS diagnosis). She also told me she wasn't even going to include it in my chart as a diagnosis. Super great! Two doctors say "no", one says "yes".

Well, I have been on a 2.5% hydrocortisone cream twice a day for about 8 weeks now, and I have seen improvement in the raw, burning, sore pain located in the creases between my labia minor and majora. The best way to describe the pain was an extremely sore bruise mixed with a rug burn that kept being irritated by my labia touching each other. This new doctor told me the steroid cream would treat any inflammatory condition; so just because I've had relief with it that it doesn't in any way confirm that it was LS...just simply means my skin was inflamed and upset.

Anyway, she wants me to stop using the cream. I asked her about just abruptly stopping it and the "withdrawal" side effects I have read a lot about, but she said weaning off is only necessary for systemic steroids (taken in pill form). Umm...that is not at all what I've read. Yes, it is more crucial for those taking steroid pills, but everything I've read says steroids must be weaned off of to avoid issues. Now I know I'm on a pretty mild steroid, but I am in no way willing to ruin the progress I've made. So, the doctor who prescribed the cream has me going down to using it only once a day starting on May 20th (2 months of using it twice a day), and then I have a follow up with him in July (so about another 1.5 months using it once a day).

Do I keep using it at the frequency originally prescribed but reduce the amount down to as little as possible instead of the pea sized amount recommended (which I've hardly ever used because it seemed liked too much)?

Has anyone had experience with needing to wean off of steroid creams after improvement was seen? Any advice would be wonderful Very Happy


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Re: Weaning Off Steroid Cream - Need Advice

Post  PelvicStrong on Thu May 12, 2016 1:49 am

Did she say why she wants you off the medication? Most of my doctors' beliefs are if the medication helps (historically proven to help with the condition instead of acting only as a diagnostic and relieving agent), you should continue to be on it.

I was only on Testosterone cream (prescribed at Testosterone 0.1% and Estradiol 0.02% in compound base - a pea sized amount to introitus each day) for about 6 weeks. It didn't help me with my vulva pain so I just stopped it. It's not hydrocortisone so I can't speak for that. I didn't have a reaction. Generally, if it's a regional medication, most of it is absorbed locally so your system doesn't have to work too hard to process it, which is probably why oral medication needs to be weaned off instead of being stopped abruptly because getting off it abruptly "confuses" your body and throws your body out of whack which could potentially cause harm. I would say listen to the doctor especially she has a lot of experience with LS.

In the beginning, I also question my specialist doctors but after I learned more about my condition and have seen them for 2 years, I realized that all of them have a pretty good idea of what I have and are on point. However, it's very compartmentalized and they can only treat what they know or found so essentially I'm still the one who needs to put all the pieces of puzzle together, which is very common for patients with this condition.

Hope it helps.


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Re: Weaning Off Steroid Cream - Need Advice

Post  PainBlogger on Thu May 12, 2016 12:32 pm

From a pharmacological standpoint, I would think that the most logical way of 'weaning off' would be to use a lower strength cream (1% is a standard strength here in the UK) at the same frequency (so 1% cream twice a day for a while) then reduce the application frequency of the 1% cream to once daily and then stop. But although I have a medical background I'm not a doctor and certainly not an expert in dermatology. That's just what would seem most logical to me.


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Re: Weaning Off Steroid Cream - Need Advice

Post  emalita on Thu May 12, 2016 3:17 pm

PelvicStrong - The only reason she gave was because I didn't have LS, which I thought was odd because even she said that the steroid cream would help with any inflammatory condition.

This new doctor really had me second guessing all the treatments I'm on from my AZ specialist (she wanted me to stop everything), but I had to remind myself that I flew out to see him for a reason. And that was because he wasn't just an average OBGYN - his clinic only treats certain vulvovaginal conditions. I've read dozens of positive reviews on him, spoken with 3 of his previous patients who all said he saved their lives, and read through a handful of his published studies regarding his testing methods. So, I owe it to myself to give his full treatment a shot. Even if he was mistaken on my LS diagnosis, his treatment for that pain still worked Very Happy

Thanks for the advice ladies!


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Re: Weaning Off Steroid Cream - Need Advice

Post  emalita on Tue May 24, 2016 4:59 pm

So I am down to using the hydrocortisone cream once a day before bed as prescribed by my doctor, but almost immediately after reducing the frequency the cream now causes burning and irritation! I used to almost look forward to the ritual of using the cream right before bed because it seemed slightly soothing. Why on earth would the cream now start to cause irritation if it hadn't really been much of an issue before when using it twice a day? I don't even remember it causing burning when I first started using it.

I thought it was because I was now applying it to dry skin when they recommend the skin being slightly damp to help the absorbency. So I've been trying to apply it to damp skin again, but it doesn't make a difference. Is my skin now more dry from not applying a cream twice a day...is that causing the discomfort?

I just don't get it...I'm so worried about regressing Sad


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Re: Weaning Off Steroid Cream - Need Advice

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