What estrogen cream do you use

Well I am going to a special 'Vulvar Clinic' in the morning.  ( My gyne told me once diagnosed with LS last December, I would be given an apptmt once a year to check for Vulvar Cancer.  I think she will be giving the exams.  If I have the opportunity to ask her a question or two, please suggest what you think is important to ask.

I am thinking I will ask:

1) about using the Clob ointment rather than the Clob cream she prescribed

2) about Vitamin D cream

3) low dose Hydrocortisone for maintenance as I have read here that some have been advised that if the LS has responded as it should to the Clob 2x weekly routine  ie every 4th day and is stable.  Sometimes I feel that the LS is sort of starting to act up before the 4th day, but I do I will refer her to Dr. Goldsteins webinar also.

Anything else anyone can suggest to ask?

Thanks. 

Sorry, wiped out some text by mistake somehow.  I'll try again -

 Sometimes I feel that the LS is sort of starting to act up before the 4th day, but I do fear varying from the routine that has proved to help most

for me.  I usually just wait till the clob application on day 4 or if really irritated do it on day 3 instead.

I will refer her to Dr. Goldsteins webinar also.

Anything else anyone can suggest to ask?

Thanks. 

I was away yesterday, Helen, so I imagine you're already at the clinic. I go to an annual colposcopy clinic, same thing – to screen for cancer. I was happy to find out that it doesn't mean we have an annual biopsy – only if a visual check through the scope reveals irregularities.

Your questions are good. You didn't mention estrogen. I'll be telling my gynae that I'm using a little externally – I had told her I couldn't/wouldn't use it vaginally, too many side effects.

I put on the clob ointment Mondays and Thursdays and I can feel I'm ready for it each time. I'm OK with that. It means reducing would not be a good idea. I'm not asking about lower-dose cortisone because I don't think it would penetrate deeply enough. (I'll be glad to hear I'm wrong)

Good to hear others tell that they can feel the Glob is needed twice a week.  I am experiencing the same.  And I have learned (the hard way) that when I feel the same symptoms sooner, to apply more often.   

Thanks Morrell - yes, to clinic at 8am.  Like you I was relieved to find that it was only a visual exam.  Gyne thinks I am 'doing well' and said to keep up the rountine. 

Here are her reactions to my questions and comments.

1) 'prefers cream to ointment because the ointment being oilier tends to spread more freely onto healthy tissure'.  She obviously feels that is not the thing we want to do.  Good to find out as I was applying it very sparingly but on entire area.  She said no, apply only on immediately affected area - anal included if LS is there but she saw none this time.

2) at Vitamin D cream, she shook her head. Feels it just doesn't do anything.

3) Re lower dose hydrocort maintenance, not a good idea.  It may mask the symptoms but does not actually do enough to deter the LS.  This was as I supposed.

She had heard of Dr. Goldstein and his advice.  She approved of the soaking part and said again that rubbing was okay if we could be very sure we were not applying the clob to healthy tissue along with the unhealthy.

She feels low estrogen in us older women does relate to the incidence of LS at our age, but she knows I cannot and will not use estrogen in any form.  Said to keep on with the coconut oil, or whatever as moisturizer instead.

So really not much else was new. 

While at the hospital, I saw several people much younger than I am with such awful debilitating problems that I came home thinking how lucky I am.  I can still eat drink and be a little merry anyway!

 

So, that's all good. I rub the ointment in and leave some time before bed, when I add the oily moisturizer. My gynae said the wider area around and up behind my anus was clear, there was just LS along the crease. So I thoroughly rub in a tiny bit straight along that crease. I'm inclined to wonder if good oily stuff isn't just as good as estrogen, but after reading what Dee said on Living with Lichen Sclerosus, I thought I'd see whether I could use a tiny bit without side effects. It wouldn't take much to make me quit.

Interesting info.  I still find that the cream was messier for me. Harder to just put where I needed. I use a bit smaller amount of the ointment and find it easier to rub in where needed. And the ointment has cleared up my flare much quicker then the cream.

So was she telling you to only apply to area that has white skin or visible symptoms?  Most of my vulva does.

And I would think rubbing it in would be a must, otherwise it just sits there and would be more likely to spread to healthy skin.

Will have to address these things when I see a gyn and see what is said about it. Be interesting to see if they'll have same suggestions or diff.

My gynae said exactly the same thing about being careful not to get the ointment on healthy skin. The pharmacist, who I knnow and trust, was fine with changing my form to ointment. Definitely using less.

Morrell and sha1271 - by the time got into bed last night I had rethought my clinic experience yesterday morning and I felt less positive.  Before bedtime, I soaked in warm water and applied the clob as it was due - had started to feel slightly irritated and itchy and it was after all day 4 and time to do it.  This time I got a mirror, flashlight, magnifying glass and using my knees, pillows, along with hands, a couple of thick books and doing great physical contortions I tried to view my nether region over my big tummy bulge.  I saw the LS area that my gyne had referred to.  I tried to rub only the little pea-sized dab of Clob precisely there. I found that absolutely impossible to do!

How the heck are you supposed to be precise when the whole area is moist, and you are rubbing into flimsey pieces of tissue like the inner labia and entrance to the vagina?  And even if you can do it, as soon as you assume a normal legs together position it will spread all over anyway.

So then I worried most of the night that as I have not tried before to be that precise that somehow I have been harming 'healthy tissue' that I inadvertently included. 

When my gyne said one must be careful to not applly Clob to healthy tissue, I should have asked, 'Well, if one does, unintentionally, then what harm does that actually do?'  So I sort of terrified myself out of a night's sleep.

Also via my rather excruciating execution of my self examination by flashlight, I had seen that the affected area is still very pearly white and it seems to be present more now in the vaginal opening itself. 

In other words, it looked much worse than it felt.  Maybe it doesn't pay to look because you can only do what you can do to keep the LS at bay.

I know the gyne would feel better if I would try the premarin cream again, but I had such a reaction to it that I just can't risk it.  Whine, whine.

Still maintaining my optimistic, cheerful to those around me - just venting to you ladies of the inner circle.  Thanks for listening.

 

Exactly right, it seems impossible to only apply it to a small spot there. And of course as soonas you close your legs the stuff is going to touch.  Im wondering if she meant by healthy tissue, not vulva tissue.  From my understanding the two week maintanence is to be done to prevent LS symptoms. So therefore applying to the whole area of the vulva even if there are no symptoms therefore preventing symptoms. I wish doctors would have some kind of model to show us exactly what and where they are talking about. And maybe we would all have a better underatanding of how to apply the damn stuff.  Most say here ya go apply this such and such. Ugh

As far as looking down there, I find it helpful to see if things are getting better or worse. I find putting a leg up on my bed and proping a mirror on the bed. That helps me see cause the mirror is right across from my vulva. Not sure if that'something you can do. It helps with not having to move tthe tummy to see.

Idk I have been applying the xlob cream for ten years on the whole vulva and now recently the ointment. I find the ointment better for me. It seems to work faster on flares and doesn't sting. I have had no problem with doing it that way. My whole vulva was white when I was diagnosed.  And don't use products that irritate you, thats just working backwards.  

Hope you feel better soon.

Shari

Hi Helen--I think that the ointment works better for me, too--less irritating and stays put with a nice water-proof barrier.  

Not sure what to say about practitioners' warnings about being careful with application.  I would interpret that for myself to mean only on the vulval or anal tissues, where needed.  Application is imprecise and not rocket science, unfortunately.  There is the possibility of thinning on healthy skin, and there is the reality of having to do the best we can to apply in the general area with attempts to keep it off of unaffected skin outside of our vulva and anus.  That's probably the best we can all do.

--Suzanne

suzanne et al -

So reassuring to hear that you understand my frustration re precise applicaation!  And very interesting that you find the ointment better than the cream.  My tube of Clob says 'cream' so I assume it is not an ointment. ( well you know what I am trying to say).  I am going to ask my pharmacist if it could be changed to the same dosage in ointment form.  As I said, my gyne was not keen and I didn't feel my place to push as she was seeing so many at the clinic.

Sha1271 you are so right about a model to show us what to do.  While I was sitting waiting to see the gyne, I wished they had put together an info sheet with LS facts as they are known so far.  Also some Questions and Answers as to what has been tried and does and does not work.  I sense the medical people sort of cringe emotionally when any of us say, 'I have read' --- or 'I saw on the internet'--- but we all go searching because we are all desperately seeking answers and none are really provided by the doctors themselves.  I guess because there has been so little research no one even makes a point of putting it in black and white.

Yes, it is, "well, you have LS and this is what you do."  Very little explanation or reassurance and we are feeling so shocked and vulnerable that we don't ask.  Until I experienced the first flare-up, I had no idea what was happening and I had to make calls over the next two weeks to get an answer as to what to do to help calm it.  By that time, thanks to good advice on this forum, (morrell for one) I had taken care of it myself.

I think someone here already suggested that maybe we need to write a book our selves.

Helen, may I tell you that I think your describing of the 'act' you had to go through to have a good look at 'the undercarriage' is priceless.  Doctors definately do not have the experience of the struggle a person goes through or they wouldn't suggest such weird ways.  Of course the stuff will spread all over.  What is the doctor thinking?  

I have mentioned this before - I take pictures of my self with the camera on self-timer.  Because it is digital I can enlarge and have a detailed look of what is going on down there.  And I keep it on file, because I find that slight changes can then easier be spotted by comparing pictures from a month or so ago with more recent pictures.

Thanks Helen for your very open and honest sharing.   

Again, Helen, that was well expressed.  I have felt 'set aside' since there is no clear answer to the problem.  Research is still in it's infancy.  But then, why does the medical world not say so.  Instead it makes us believe that they know what they're doing.  Shocked I was too and feeling extremely vulnerable.  Of course one searches for answers elsewhere.  And luckily there is this forum.  

Oh, Helen, I hope you'll sleep better tonight! Dr. Goldstein says a lot about application, but he doesn't give any dire warning about thinning the healthy skin. I really feel confident that as long as I thoroughly massage in a tiny amount on my vulva, perineun, and the part behind my anus that's still red – there's none left to melt and spread. My gynae mentioned this, too – sometimes I think they're very pleased with themselves if they have some tidbit of info to give us, fairly generic.

Helen, I wouldn't worry about not using Premarin cream. It doesn't make the white LS skin turn pink. It's supposed to plump up the flesh more like pre-menopausal. Dee on 'Living with Lichen Sclerosus' suggested that it might reverse fusing and so did my gynae last year, so that's why I'm giving it a second chance.

That said, on close examination I see I have the first few white spots of yeast forming and I'm inclined to blame the Premarin. But I did have a bit of ice cream yesterday. I'm glad I at least had the sense to only have a kiddy cone. I applied about half a teaspoon of my good homemade yogurt in there last night and this morning. I would really like to nip it in the bud and not have to buy Canestan.

Hanny, Suzanne posted an article on research into autoimmune disorders yesterday. There was a short list – MS, diabetes Type 1 and Graves Disease. They're only interested in the big numbers, understandably. Dr. Goldstein's presentation addresses this – he shows a slide with a scattered set of dozens of different coloured spots conected with lines and points to three dots that symbolize the proteins they know cause the LS inflammation. He admits that using cortisone is like a shotgun  – it hits all the proteins – when what we need is a rifle to shoot just those three. Then he says in no uncertain terms that they are NOT working on a tightly targeted drug for LS, because there aren't enough cases to warrant funding. I thought that was very frank of him.

Maybe as they get the proteins and treatments figured out for the Big Three, they'll have a shortcut to figuring out LS later. I'm not holding my breath.

Somewhere I read that LS happens to one in sixty women.  I wonder how that number compares with other auto immune disorder sufferers.  Do we know?

I sooner think that many LS sufferers keep quiet and therefore will not add to the numbers.  I'm not that open about it either, only very trusted friends.  Doctors are not necessarily in the business of bringing people together who suffer the same illnesses.  Only in this forum do we meet.  But then again, we meet only those who are computer literate.

And the doctors we meet seem to have different opinions.  Not one the same. For now I'll keep focussing on Dr. Goldstein.  He is actively studying LS, where our day to day medical world would not have the time or funding to do so.  

Hanny good point on Goldstein, he is activily working toi help find answers.

Lots of goods info from you all.

Question: how doea this whole compounding thing work.? I have one compounding pharmaxy in my area. Does insurance pay for it.?

Once again, thank your for your support.

Do have to chuckle - glad you  appreciated my description.

I did too helen...very acrobatic!! 

In answer to your question: Not really, our insurance only pays partially for it.

Helen, I too have the same nightmare of how am I to possibly get that stuff exactly where it's supposed to be when I  can't even see down there without some serious magic tricks. I have a tummy too that won't just move itself,  so lying down to examine is impossible as is sitting,  squatting. I'm able to perch on the edge of a chair, lean back and see with a handheld mirror, but that only gives me one hand to try and spread my lady parts. And because I'm overweight, I have more down there to manipulate.  I'm at a loss.