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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 19

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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.

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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

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Re: Weaning Off Steroid Cream - Need Advice

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