Is the steroid cream/ointment just used to handle the itch?

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Went to see my Gyn today for a follow-up and I am so unsatisfied.  He seems to think I have a mild case (yet he really hasn't even looked at my genitals with LS in mind)  He does not want to give me any steroids as he says they cause thining of the skin and if I am not too itchy I really don't need them.  So..... is the use of the Steroid cream just to handle the itch?  I told him if my case is minor I want to at least be pro-active so it doesn't get worse.  I am now looking for another doctor.  Anyone from Edmonton Canada out there?

 

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15 Replies

  • Posted

    Did you tell him how sore you are after sex? Male doctors don't seem to take the itching very seriously.

    Clobetasol (and in some cases like mine – tacrolimus) gets to the bottom of the inflammation to calm down the cycle of flaring and tearing. The argument that steroid ointment thins the skin is one dermatologists use when telling psoriasis patients not to use the creams around their eyes (because the skin there is already so delicate). But LS creates a thick layer of scar tissue that has a tendency to split. My experience after being untreated for 40 years and having very painful, bloody tears is that thinning the white patches with clob makes them split quite shallowly and heal quickly. Also applying it twice a week around the front has kept the whole vulva from itching, blistering, splitting and swelling – in my case.

    Refusing clobetasol for fear of skin-thinning is kind of throwing the baby out with the bath water. I slathered topical corticosteroids all over my hands for thirty years. Yeah, maybe my skin there is a bit more papery than most 64-year-olds. Maybe it's a bit more fragile. But it's a fine line. When I started to worry about side effects fifteen years ago when the internet made information easy to get, I quit cold turkey and then suffered a two-year psoriasis flare-up like I'd never had before. And that was also when the LS got bad fast. I suspect the bit of Betnovate that got into my system through my skin all those years was helping keep LS from getting out of control. So, when I was diagnosed two years ago I just decided to use the prescription and not fuss about possible side effects from using clob on a few square inches of thickened skin.

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  • Posted

    Hi  Morrell1951

    Thanks for the response.  I did tell him that sex was painful and that I could feel like I was tearing from and that the next day was worse,.

    He said use more lubrication and to have sex more so that the vagina would stretch.  He then gave me a 'sample' of RepaGyn which is a hormone free and suppository that relieves dryness and vaginal mucosa.  He said if the LS got worse he would prescribe Dermovate.

    He seemed to be brushing me off or at least that is how I felt.  Everytime I have seen him it is like he has seem me for the first time and asks why I am there.,  UGH

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    • Posted

      Geez. We don't tear because our vagina is too tight. We tear because the LS tissue is fragile. Mine tears now and then and I don't have sex at all. Friction-intense intercourse during a flare-up will only make it worse. It's one thing to use a dilator to carefully stretch, but the friction of intercourse is entirely another problem. I'm afraid he's more concerned for your husband that you. Like the old joke about taking an extra stitch or two in an episiotomy and winking to the husband.

      Sorry, but this is all my pet peeve.

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    • Posted

      Morrell, I can understand.  My experience however is, that LS is also controlled by dilation.  Done with the greatest care.  LS wants to narrow, then fuse.  Dilation helps to hold that back.

      After that I have experienced that gentle intercourse is very well possible. With the emphases on the word gentle.   

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    • Posted

      Hanny, you are our beacon of hope. Plus, you have a peach of a husband.

      I got involved with a man before my recent ex who made it clear before the first time we slept together that he wasn't interested in and gentle, slow old people's sex. At that point I hadn't been diagnosed. I knew I had a problem, because I'd bought a tube of 'YES!'. So, out there among aging Lotharios, there is some knowledge of older women needing to make love gently.

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    • Posted

      Yes, Morrell I have to count my blessings indeed.

      What you describe I call 'severely ignorant of YOUR needs.'  And that altogether makes for a sad story and experience.  I imagine that to be very hard to live beyond. 

      That particular thought crossed my mind as well - is the gyno considering my husband's needs or my personal situation and abilities.  My husband then came along with the next visit.  It showed perhaps that my husband was concerned for MY well being.  And I think I have a good gyno, considered and respectful. He wants to know how I manage and what exactly I do and writes it carefully down.  

       And my findings are passed on to other patients.  They also get to hear about 'that group at Patient UK'.  And I keep talking to other women when given a chance or opportunity.  The world needs to know that this debilitating illness exists.  What it is to keep it under control and liveable.  All the people on this side have contributed to this bundle of info that makes life with LS doable.  

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  • Posted

    Hey same thing with me only my doc wasnt worried about the thinning,just thought i might not need it as some cases never get any worse..got me. I just take hydrocortisone 1 percent over the counter..helps the itch and about 700 times less strong .she told me as needed.
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    • Posted

      Hi Lee

      Thank you.  I don't want to use a strong steroid if I don't have to.  I will get a second opinion as my trust in the first doctor is zero

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  • Posted

    Hi Sue,

    Another person having to deal with insufficient caring from their doctor.  It is so sad to read that.  Best is, if possible, to find another doctor and see what you will hear then.  

    For me a regular use of the tiniest amount of glob remains necessary to keep LS in control.  Next to the whole regiment of baking soda baths and rinses, plus coconut oil.  And not to forget diet.  (have you tried that already?) (sugar is the main thing, next to alcohol, perhaps no dairy and no gluten) (a matter of testing)  

    Also - I would recommend dilation as well.  Regular dilation helps to keep all stretched with you yourself being in control.  After that intercourse is better. (for lube I use fluid coconut oil)  

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    • Posted

      Hi Hanny

      Thanks for you reply.  I already have made an appointment to get a referral 'yet again' to another GYN.  

      I want to be able to feel comfortable with what they say and I want to be pro-active

      I am doing the baking soda baths now and have cut back the sugar (have to work on the wine though),  I will buy some fluid coconut oil.  Then work from there.

      Where does one get a dilator?

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  • Posted

    Sue, you need to find another doctor asap.  Do some research, and look for a Vulva Clinic.   I have no patience for such physicians.  LS needs to be carefully watched, and if your doctor is not even listening to you at this point, it does not bode well for the future. 
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    • Posted

      Hi Guppy

      I googled Vulva Clinics and it looks like we don't have any here.  Weird enought the Dr I saw is listed under Vulva speciality but I will not go to him again

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  • Posted

    HI Sue,  Have you listened to Dr Goldstein's webinair about Ls, the link is posted to the post called 'new to ls start here' which is posted to the beginning of this forum discussion.  I think it may provide you with more information that you can then actually educate your GP who is under the misconception that steroids are a problem to us.  In fact they are necessary for us. Hope you get sorted.
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