advice going forward

[Guest guest]

Hello ladies,

Sorry in advance for the long email.

I have lurked here for a while, reading the email exchanges and learning so much from all of you. Thank you to each and everyone of you who write in questions and fears that echo my own and help me feel less like a freak, as well as those who share their own hard earned answers and information.

I have had V sx since the age of 5, finally diagnosed Oct 07 with "lichenoid" condition, by Dr in MA. All that time I lived with it, but I often wonder if the last few months of "treatment" haven't been more overwhelming than living with the off and on itch/rawness/pain/discomfort. I have been following my doctor's advice yet I still continue to suffer V symptoms off and on. I think it has even gotten worst.

I have V sx- sometimes FEELS bad, sometimes LOOKS bad, but I can be red and not so uncomfortable or nomal colored and completely on fire. I have been *trying* to use low dose clobatesol in NB with vasaline, and most recently with Vit E oil at night for 6 months. I have never reached total comfort, but I kept trying bec Dr said so. Each time I tried to increase the amount of Clob, or moved to twice a day (the Dr reccomended frequency), I burned and needed to take 2-3 days off from clob. Also, got a bit lazy- if I forgot to apply the clob until after i was in bed, I skipped it. I often ignored slight burning (Dr recc'd) during this time, since my mission was to 'get that steroid in there to calm things down'.

2 weeks ago began the worst "flare" of my life. (I didn't even used to have a name for these "bad days".) Rawness, burning, itiching- no sleep, no comfort. In the past, a few baking soda baths used to fix everything. This time- not. For the first time ever I took Benedryl which made me constipated which led to hemoroids flaring as well. And no real help to V sx.

I actually found the email string from 2 weeks ago started by Emma's own flare to be most informative- thanks Dee, Cell, Emma, et al on that.

Here's the thing: using some of that info, I used cold/cool compresses and plain vitamin E oil compresses (happening to have it in the house) and ---relief! I have since stopped clob altogether and am afraid to start a new steroid after all of that. This morning I woke up with just about NO irritation- almost NEVER happens. It did ramp up again a little as the mornign has worn on, - but extremely bearable.

The nurse that I see at Dr 's office has insisted I need steroids to address the underlying physiological inflammation. She tells me the non steroid things may alleviate the discomfort but do nothing to "correct" the underlying cause. Yet, after reading this message board, I am not clear if I will ever be *cured* even with the steroids. If the steroids are just managing to keep things at 2/10 discomfort, and vitE and compresses acheive the same result, then do I really need to use the steroids?

So I am not sure how to proceed? I have compounded tubes of Betamethasone 0.05% and Estradiol 0.01% after my last appt (at the start of this flare). She thought I may be less sensitive to a different steroid and I got the Estradiol after complaints of dryness (proven by the good old speculum test!) She wrote for it to be inserted via injector- not used as a topical cream.

Is this the same as Estrace?

Could I use it as a topical cream?

--What I want to know is, at my age (43) and being basically menopausal, what are my chances of resolving this condition? (I have read that cures don;t come after menopause)

--What are the chances of resolving it for any of us?- Do some women ever get able to put this V stuff completely behind them?

--If I continue to rely solely on vitE oil, will this also become ineffective over time?

-- Will things get worst with time in menopause?-- looking back, my V symptoms did get worst in my 30's.

-- Do I really need the steroid?

I know what the Dr office says about all of this, but I view all of that as one medical opinion. I'd really like to know what you ladies think. You share my condition, my frustrations and my questions. What has your experience been like?

Also, I am ready to get a second opinion. Can any of you reccomend other practitioners in MA? I'm not complaining about Dr S or her staff. She FINALLY took my complaints seriously and for that I am grateful. However, I am ready to go beyond *validation*. Dr. Alright already, you believe me, now how can you help me? -lol.

Appreciate any thoughts, ideas, opinions.

Eva

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[Guest guest]

Hi Eva, Sorry to hear you have had vulvar trouble since you were young. I personally do not have any experience with the steroid creams. Yes, Estrace and Estradiol are pretty much the same thing. Estrace is a brand name of Estradiol (which is the dominant bio-identical estrogen made by the ovary). If you have bad vaginal dryness, you may 'need' the applicator of Estradiol. You can take a tiny amount and rub it on the vulva (externally) too. While it is true that V.pain can be a difficult problem, I say do not give up, or throw in the towel! It took 13 yrs. of suffering before I saw the biggest improvement, so it is possible to improve even after a long time. Yes, some women do get beyond v.pain and are able to move forward. I'm not

sure about another practitioner in MA, but some like Lori Boardman in Rhode Island. I say hang in there, read and study all you can. You can go to the homepage of the group and do searches on anything you'd like. You can learn a lot from the past posts, and oh don't forget to look through the files and links on the homepage, too. Hugs, Chelle

[Guest guest]

Amy,I would urge you to become a member of the Yahoo Lichens Schlerosis group, a companiongroup to this one which focuses on lichenoid issues. The women there are both extremelyknowledgeable and supportive and will be able to answer your specific questions regardingsteroid use.http://health.groups.yahoo.com/group/LichenSclerosis/Hollis Hello ladies, Sorry in advance for the long email. I have lurked here for a while, reading the email exchanges and learning so much from all of you. Thank you to each and everyone of you who write in questions and fears that echo my own and help me feel less like a freak, as well as those who share their own hard earned answers and information. I have had V sx since the age of 5, finally diagnosed Oct 07 with " lichenoid " condition, by Dr in MA. All that time I lived with it, but I often wonder if the last few months of " treatment " haven't been more overwhelming than living with the off and on itch/rawness/ pain/discomfort. I have been following my doctor's advice yet I still continue to suffer V symptoms off and on. I think it has even gotten worst. I have V sx- sometimes FEELS bad, sometimes LOOKS bad, but I can be red and not so uncomfortable or nomal colored and completely on fire. I have been *trying* to use low dose clobatesol in NB with vasaline, and most recently with Vit E oil at night for 6 months. I have never reached total comfort, but I kept trying bec Dr said so. Each time I tried to increase the amount of Clob, or moved to twice a day (the Dr reccomended frequency), I burned and needed to take 2-3 days off from clob. Also, got a bit lazy- if I forgot to apply the clob until after i was in bed, I skipped it. I often ignored slight burning (Dr recc'd) during this time, since my mission was to 'get that steroid in there to calm things down'. 2 weeks ago began the worst " flare " of my life. (I didn't even used to have a name for these " bad days " .) Rawness, burning, itiching- no sleep, no comfort. In the past, a few baking soda baths used to fix everything. This time- not. For the first time ever I took Benedryl which made me constipated which led to hemoroids flaring as well. And no real help to V sx. I actually found the email string from 2 weeks ago started by Emma's own flare to be most informative- thanks Dee, Cell, Emma, et al on that. Here's the thing: using some of that info, I used cold/cool compresses and plain vitamin E oil compresses (happening to have it in the house) and ---relief! I have since stopped clob altogether and am afraid to start a new steroid after all of that. This morning I woke up with just about NO irritation- almost NEVER happens. It did ramp up again a little as the mornign has worn on, - but extremely bearable. The nurse that I see at Dr 's office has insisted I need steroids to address the underlying physiological inflammation. She tells me the non steroid things may alleviate the discomfort but do nothing to " correct " the underlying cause. Yet, after reading this message board, I am not clear if I will ever be *cured* even with the steroids. If the steroids are just managing to keep things at 2/10 discomfort, and vitE and compresses acheive the same result, then do I really need to use the steroids? So I am not sure how to proceed? I have compounded tubes of Betamethasone 0.05% and Estradiol 0.01% after my last appt (at the start of this flare). She thought I may be less sensitive to a different steroid and I got the Estradiol after complaints of dryness (proven by the good old speculum test!) She wrote for it to be inserted via injector- not used as a topical cream. Is this the same as Estrace? Could I use it as a topical cream? --What I want to know is, at my age (43) and being basically menopausal, what are my chances of resolving this condition? (I have read that cures don;t come after menopause) --What are the chances of resolving it for any of us?- Do some women ever get able to put this V stuff completely behind them? --If I continue to rely solely on vitE oil, will this also become ineffective over time? -- Will things get worst with time in menopause?-- looking back, my V symptoms did get worst in my 30's. -- Do I really need the steroid? I know what the Dr office says about all of this, but I view all of that as one medical opinion. I'd really like to know what you ladies think. You share my condition, my frustrations and my questions. What has your experience been like? Also, I am ready to get a second opinion. Can any of you reccomend other practitioners in MA? I'm not complaining about Dr S or her staff. She FINALLY took my complaints seriously and for that I am grateful. However, I am ready to go beyond *validation* . Dr. Alright already, you believe me, now how can you help me? -lol. Appreciate any thoughts, ideas, opinions. Eva ___________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

>

> Hi Eva,

>

> Sorry to hear you have had vulvar trouble since you were young. I

personally do not have any experience with the steroid creams.

>

> Yes, Estrace and Estradiol are pretty much the same thing. Estrace is

a brand name of Estradiol (which is the dominant bio-identical estrogen

made by the ovary).

>

> If you have bad vaginal dryness, you may 'need' the applicator of

Estradiol. You can take a tiny amount and rub it on the vulva

(externally) too.

>

> While it is true that V.pain can be a difficult problem, I say do not

give up, or throw in the towel! It took 13 yrs. of suffering before I

saw the biggest improvement, so it is possible to improve even after a

long time.

>

> Yes, some women do get beyond v.pain and are able to move forward.

>

> I'm not sure about another practitioner in MA, but some like Lori

Boardman in Rhode Island.

>

> I say hang in there, read and study all you can. You can go to the

homepage of the group and do searches on anything you'd like. You can

learn a lot from the past posts, and oh don't forget to look through the

files and links on the homepage, too. Hugs, Chelle

Yes, hang in there. I have had vlp for over 40 years and just about 5

yrs. ago I found a doctor who finally discovered what I had and now it

can be treated and maintained. I use a steroid oinment, called

Temovate(clobetesol). After all these years of thinking it was in my

head, Ican now deal with it and live fairly normal.

Don't give up.

>

[Guest guest]

cbuckh1030 wrote:>>>>>Yes, hang in there. I have had vlp for over 40 years and just about 5yrs. ago I found a doctor who finally discovered what I had and now itcan be treated and maintained. I use a steroid oinment, calledTemovate(clobetesol). After all these years of thinking it was in myhead, Ican now deal with it and live fairly normal. Don't give up. Hi there! Thanks so much for sharing your story. I am so sorry it took so long to get help. It's almost too hard to believe that you went that long undiagnosed properly. However, I think your story speaks volumes regarding HOPE. I just don't think we should ever give up. OR listen to practitioners that say we won't ever get better. Sure we'll get frustrated, and cry, and feel like we're on a roller coaster of emotions....but

give up??? NO WAY! Hang in there.....Hugs, Chelle

[Guest guest]

Chelle, Thanks for the estrogen clarification. It sounds like that may have ended up having something useful and I am relieved to think I got something that others have had success with. There is a lot of scary stuff in this group about CLob and I only found it out after I started to use it.

I have tried to read and study about the V disorders and treatment, and I admit I am completely overwhelmed. Not so long ago my Dh and I were grappling with infertility and that is another area of medical neglect and misinformation, and I wore my brain out trying to comprehend all the variables and stay on top of our treatments in THAT situation too.

(I am personally infuriated that with all the talk about health insurance and soaring medical costs, it is we the patients who are doing all of our research nowadays.)

I guess I get overwhelmed in facing all the info online, on the group and in other groups. However, knowledge is power and I am trying to take control of this darned conditon of mine....

Thanks for your encouragement.

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[Guest guest]

Hi Hollis,

Thanks do much for your reply. I will have to check out the LS group. Back when I got my original diagnosis in Oct 07, I did a cursory review of all the yahoo groups that seemed related and I got very overwhelmed indeed. I made a decision to stay on *one* and try to get what I could from it. I may have chosen t is one because it seemed more general, like I could defintiely use some of the info in it.

Also, Dr called it "lichenoid":- bec she didn;t see any lesions, but I have the so called "structural changes" that usually happen with lichen. SO I guess I moved to thinking how it may not be lichen at all, and perhaps (wrongly) thought what is relevant for one v condition is relevant for everyone.

So thanks for the tip- I will try the other group.

Good luck!

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[Guest guest]

Thanks for the hope! It is good to know that somewhere out there might be some true resolution to all of this pain and itch. I am glad that you *finally* found a treater who could take the symtpoms seriously and help you to manage it.

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[Guest guest]

I totally understand the group overload problem (i have it myself!), but am really gladyou're going to check it out. With your structural changes, the LS group is definitelythe one for you. And as i said, the women there are great.Hollis Hi Hollis, Thanks do much for your reply. I will have to check out the LS group. Back when I got my original diagnosis in Oct 07, I did a cursory review of all the yahoo groups that seemed related and I got very overwhelmed indeed. I made a decision to stay on *one* and try to get what I could from it. I may have chosen t is one because it seemed more general, like I could defintiely use some of the info in it. Also, Dr called it " lichenoid " : - bec she didn;t see any lesions, but I have the so called " structural changes " that usually happen with lichen. SO I guess I moved to thinking how it may not be lichen at all, and perhaps (wrongly) thought what is relevant for one v condition is relevant for everyone. So thanks for the tip- I will try the other group. Good luck! ___________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Also, things that just look " lichenoid " can change very quickly into

full-blown lichen disorders and need to be watched closely and perhaps

even treated proactively. I wish I had been using estrace before I lost

most of my inner labia...

Melinda