Vulvodynia Support
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» Hope to all my suffering ladies
Weaning Off Steroid Cream - Need Advice EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Weaning Off Steroid Cream - Need Advice EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Weaning Off Steroid Cream - Need Advice EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Weaning Off Steroid Cream - Need Advice EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Weaning Off Steroid Cream - Need Advice EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Weaning Off Steroid Cream - Need Advice EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Weaning Off Steroid Cream - Need Advice EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Weaning Off Steroid Cream - Need Advice EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Weaning Off Steroid Cream - Need Advice EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Weaning Off Steroid Cream - Need Advice

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Post  emalita 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

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  PelvicStrong 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

Posts : 5
Join date : 2016-05-05

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Post  PainBlogger 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

Posts : 219
Join date : 2015-07-27

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Post  emalita 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

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  emalita 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

Posts : 249
Join date : 2016-03-29
Location : USA

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