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Sharing a rather perplexing gynechologist's thinking.

Posted , 11 users are following.

helen99763
helen99763

Hi all - here I go again!  I felt I was doing quite well keeping the LS at bay with my twice weekly clobetasol applie a la Dr. Goldstein.  I did seem to have one small problem area  and  in between applications this area a little itchy and irritated.  To me it seemed like this area maybe needed an  additional clob. application. 

Then, Thursday last when I went for my annual visit, my gynechologist told me she suspected that the troublesome area was due to the fact that the clobetasol had thinned the skin there too much.  I was shocked when she said she wanted me to 'take a rest' the clob only in that spot but continue it on the healthy skin.  I asked how long a rest and she said to really try not to apply it there for three months!  I was horrified  as I thought it would become even more iitchy and sore. I had her repeat her instructions as I thought I had heard wrong! I said "what can I apply as an alternative?  She once again stressed that Premarin twice weekly was the best as it would strengthen the skin.  I reminded her gently She is really so sweet and is sincerely trying to help, but I gently reminded her of my reluctance to use Premarin as 1) I am an estrogen-dependent breast cancer survivor, 2) I did try it once at her suggestion and almost immediately felt breast tenderness, swelling under my arm where lymph nodes had been removed, and after only two applications of it I had what the EMR doctor diagnosed as a mini-stroke.  She agreed once again maybe Premarin is not for me but could offer no other suggestions.  I told her that the coconut oil I use seems too keep me comfortable.

She also said that to keep this area from receiving any clob when I applied it to the 'healthy' areas. I should do this:  Apply the clob, rubbing it in to the good areas, keep my legs apart for 20 minutes to allow the clob to be absorbed.  Perhaps apply some zinc oxide diaper rash cream to the 'unhealthy area' to keep it from absorbing any clob and also before urinating as the urine might also irritate it.

So - more jumping through hoops.  What do you all think about this news?

I left her office feeling like I might as well give up trying to cope with it all. I was sure that the itch and irritation would get worse.  But I said I would try to do as she suggested.

Her good news, however, was that overall everything there is looking very good. No real sign of the LS except at vaginal opening.  No  fissures in the perineum.

To my surprise, so far the irritated area has calmed down and so I will see how it goes. 

1 like, 17 replies

17 Replies

  • Guppy007
    Guppy007 helen99763

    Posted

    Helen, Your post just reminded me of my earlier post regarding doctors!!!

    I can hardly believe that your  gynecologist  would not have made a note on your file regarding Premarin, that is just shocking!  Have you thought of looking elsewhere for a different opinion, I do know what its like when you feel like you have built a special relationship with a doctor, but really she sounds more than a bit dizzy to me from everything that you have said.  Can you really trust her opinion regarding anything really, if you had happened to be as dizzy as her and used this it could have killed you. 

    I am glad that the irritated area has calmed down and I would be interested to know how that goes.

  • geneva1114
    geneva1114 helen99763

    Posted

    This sounds familiar to me - I had thinning and fusing in areas caused by clob when I had initially been told it was supposed to help. When I found a knowledgeable doctor for a third opinion I was told to stop using clob on those areas and to strengthen with estradiol and emutopic which have both really helped to strengthen the skin again and prevent more fusing and tearing.

    Hope it keeps going well for you.

  • renee77108
    renee77108 helen99763

    Posted

    Try 99% pure aloe vera gel for the itch...plus it is moisturizing. It works well for me...and may help. You can also use the gel right from the plant. I can't use the estrogen creams either...there is a additive in them that causes flares with me whenever I have tried them...no matter the brand. Coconut oil is also excellent for moisturizing and has healing properties. The zinc oxide is a good barrier cream...I've tried it and I find it causes me to itch more...but could be different for someone else.  Good luck!
  • Hazel1962
    Hazel1962 helen99763

    Posted

    Oh dear, this is very confusing! So the Clob has thinned the damaged skin too much but now she says use it on healthy skin? She seems to be contradicting everything that's gone before, also telling you to use medication which has caused you problems in the past! She may be a lovely woman but I think I'd be getting another opinion. 
  • hanny32508
    hanny32508 helen99763

    Posted

    Confusing to me.  But you said that the irritated area has calmed down.  Is there again something we don't know yet?  My gyna also told me to dare put Glob on healthy skin.  ??? 

    You're not the only one who can't handle Premarin.  I use an alternative estrogen.  So far so good.  

  • kate207
    kate207 helen99763

    Posted

    I have one very irritating spot which doesn't respond to Clob. Eventually, after very close examination, my gynacologist decided that it wasn't a 'live' area of LS, its where healthy skin is constantly tugging against a fused area and creating micro-tears which then get irritated by urine. I now keep it moistured and covered with zinc cream and rinse after peeing and it's not too much bother. Hope this may be useful
    • Morrell1951
      Morrell1951 kate207

      Posted

      Kate, that sounds just like my perineum.

      I'm very confused by this skin-thinning diagnosis. Maybe a dermatologist is the next stop. My gynae didn't like the fact that after 18 months of clob I still have a small whitish area and an intermittent tear. She switched me from clob to Protopic (tacrolimus). It's only been a month or so, so it's too soon to say, but I'm optimistic. She surprised me by admitting the reason she holds off so long before trying tacrolimus is that it's a lot more expensive. I'm in Canada, so it's not prohibitively expensive, but someone on this forum said it cost hundreds of dollars per tube in the US before there was a generic version (recently).

    • Hazel1962
      Hazel1962 kate207

      Posted

      Sounds like perineum too, don't think the LS is in that area but it sometimes splits, I tried the Clob on it but it didn't seem to heal so I started using just a barrier cream and now it's ok. Might try the zinc creams instead. 
  • patricia86334
    patricia86334 helen99763

    Posted

    I also really liked my ob/gyn as a person.  She is so sweet and kind and I almost stayed with her just because I liked her so much.  But after reading many, many letters on this forum, and finding out so many things about LS that I hadn't been told at all, and seeing that my ob/gyn was actually telling me false information, I looked for a Vulvar clinic in my general area, and even found a dr. there who specialises in LS.  She immediately told me to stop using Clobetasol, as it had damaged the skin, thinning it so much it was irreversable.  She put me on a milder steroid and showed me the only two small areas to use it on.  (yes, it is really pretty difficult to keep it off the rest of that area!  It's not as if we are trying, say, to use the steroid on a right leg or a left leg!)  The first Dr. that I liked so much as a person, also told me to use Premarin, but only on the inside, do NOT let it touch the outer skin...well, I decided I didn't want to use that any way, so I didn't.  She told me it would not reverse any fusing, that nothing would reverse the fusing.  See?  Different opinions and different realities from every doctor...one says this and one says that.

    Back to  your particular case....I also agree that you should probably ditch that dr. you are seeing.  If she didn't even remember that you are allergic to something she prescribed before, time to find another dr.  Anyway, not like she even has to "remember", right?  She is supposed to read all  your notes and case history every time she sees y ou.

    • Morrell1951
      Morrell1951 patricia86334

      Posted

      Wow, Patricia, this is very disturbing after a year and a half of using Dermovate (clobetasol). That an LS specialist said clob had irreversibly thinned the vulva! This is making me feel better about using Tacrolimus now. I must say that there were many times over this period when I wondered whether any of the progress I experienced wasn't really due to stopping sex and sugar and soap. Dr. Goldstein says so clearly that thinning is part of the strategy. But, then, he also says very strongly that it's all about how you use the ointment. I can well imagine a lot of patients using too much or applying it too widely or being very sweaty (in hot climates) so it oozes onto the wrong areas.

      I can't deal with Premarin either, so I'm glad to hear she said it wouldn't reverse any fusing anyway.

    • patricia86334
      patricia86334 Morrell1951

      Posted

      Yes...you are so right.  Because my original Dr. told me it was OK and fine to use the Clob anytime I felt a bit of itch, or bit of sting...I was using it sometimes every day!  Now, I am the one who used the smallest smidgeon possible of the Clob....I never used a "pea-sized" amount...more like just a swipe off the top of the open tube..so it wasn't that I was using too much of the product at a time, I was using it too often.  I stopped eating sugar almost completely after first joining this forum, and stopped using soap when I read that helpful hint here also. 

       

    • Morrell1951
      Morrell1951 patricia86334

      Posted

      Glad you've clarified. I've understood that the twice a week use is really to deliver a steady low dose. Using it as symptom relief is bad, you've shown us that. All the other things we do are for symptom relief. I wonder if now that this has happened you might be prescribed Tacrolimus.
    • patricia86334
      patricia86334 Morrell1951

      Posted

      I will ask about Tacrolimus at my next appt with the specialist in a couple of months.  Right now, she took me off Clob and put me on Triamcinolone...I believe that is the spelling...(I am all the way across the house in the computer room and don't want to go find the tube and spell it right  :0)...)

      She said it is as effective as the Clob, but milder.  She was also specific about where exactly to put it, whereas the first Dr. just said rub it all over the whole area, but not anywhere around the back end as LS never affects anything except vaginal tissue.  I am trying to get myself back into proactive mode and I am having a very difficult time disciplining myself.  My husband and I went to the beach the last weeks of Dec., and, even tho I didn't eat any sugar as in cake, pie, cookies, ice cream, chocolate, etc. I did eat bread and pizza, those sort of carbs., and I cannot seem to get back to the strict diet I had been keeping for months.  Of course, I have had many, many problems and stresses to deal with over the past couple of months and just want to hide away and stop thinking about anything at all.  I have let coffee slowly slip back into my day, too, and I seem to feel a what's the use sort of attitude and a oh so what sort of thinking.  I'm sitting here, reading my mail, stomach rumbling...haven't eaten anything yet and feel blah.  So, right now I barely even care what sort of steroid I am on and feel very little interest in just about anything.  Depressed, maybe?  yep.

    • Morrell1951
      Morrell1951 patricia86334

      Posted

      You sound the way I've felt a lot of this winter. I don't worry about carbs. I have been drinking a cup of coffee, never two days in a row. Too much loosens my BMs, irritating the back exit. But sugar, I'm very careful about. If I slip I'll rub in a bit of Canestan to nip any yeast that may have enjoyed the dose of sweets.

      The doctor who told you LS doesn't affect the skin around your anus was wrong. In fact it's textbook LS to have a 'figure 8' area – including the vulva and perianal skin.

       

  • helen99763
    helen99763

    Posted

    Hello all - I just wrote a long letter to thank you for your kind and informative response.  But hit a wrong button and it is gone and I am too tired and short of time to rewrite it just now.  What happens to what we write when it just disappears and we cannot page back or find it anywhere.  Dear moderator, is there any way we can have a chance to resend what we have written?  Like a Windows type "Are you sure you want to delete (whatever file)"  then we could say yes or no.
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