Log in

I forgot my password

Latest topics
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: 0

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: 3

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

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

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: 4


Weaning Off Steroid Cream - Need Advice

View previous topic View next topic Go down

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

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Posts : 4
Join date : 2016-05-05

View user profile

Back to top Go down

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

Posts : 214
Join date : 2015-07-27

View user profile

Back to top Go down

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

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

Re: Weaning Off Steroid Cream - Need Advice

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum