Is the steroid cream/ointment just used to handle the itch?
Posted , 6 users are following.
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?
1 like, 15 replies
Morrell1951 sue19838
Posted
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.
sue19838
Posted
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
Morrell1951 sue19838
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Sorry, but this is all my pet peeve.
hanny32508 Morrell1951
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After that I have experienced that gentle intercourse is very well possible. With the emphases on the word gentle.
Morrell1951 hanny32508
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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.
Morrell1951
Posted
hanny32508 Morrell1951
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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.
lee12629 sue19838
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sue19838 lee12629
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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
hanny32508 sue19838
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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)
sue19838 hanny32508
Posted
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?
hanny32508 sue19838
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Guppy007 sue19838
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sue19838 Guppy007
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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
Chrisy sue19838
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