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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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

emalita

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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.

PelvicStrong

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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.

PainBlogger

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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!

emalita

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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

emalita

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Re: Weaning Off Steroid Cream - Need Advice

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