1. Community
  2. Women's health
  3. Lichen Sclerosus

Anyone else have problem with topicals?

Posted , 10 users are following.

Abba525
Abba525

Long story short, I have probably been having this issue for years and didn't realize what it was. Busy with work and everyday life I put myself on the back burner and tried to treat myself as a yeast infection like so many others.

A month ago I went to the dr "for thought yeast infection" and she introduced me to Lichens. She wrote for clobetasol and I started using it that day. It was a Thirsday by Monday, I could not sit, pee, barely wear clothes. The inner part of my labia majora were full of ulcer type sores. She then scared me to death and tested me for HSV, which was negative. She said that I must have had a reaction to clobetasol, like a chemical burn. Fast forward, labs show I have zero estrogen in my body and am post menopausal at the age of 36. She prescribed estradiol and estrace cream, the cream to be used on the labia of course. I went back a week later with no improvement and she referred me out. I saw a gyn/oncologist last Friday the 1st. He did a biopsy, 7-10 days for results, said he had never heard of anyone having a reaction to clobetasol. Just in case he prescribed testosterone. We live in a rural area and it needed to be compounded of course and my husband is picking it up today. In the mean time I have continued to use the estrace every other day as the original dr instructed. I may have two good days where the symptoms are manageable, other days I'm miserable with the burning, the twinges, prickling like needles, and unbearable itch. I'm usin cocnut oil to help, when I'm at home I'm panty less and "airing" out or soaking in a sitz bath. I have no labia minora and completely fused from above my clitoris to just above my urethra. Has anyone else had a hard time finding the regimen that works for them? It's really starting to beat me down.

1 like, 13 replies

13 Replies

  • lynne1945
    lynne1945 Abba525

    Posted

    I'm very sorry you are having to deal with this! It is hard, and always when first diagnosed you have the emotional side to deal with as well. It can't be stressed enough that you need lots of support and I hope you have that.

    Actually it is possible to have a reaction to Clobetasol. My doctor, gynae and eventually dermo all tried to insist I use it but I couldn't stand the burning. I have lesions and they became worse, and particularly with the ointment. I can get by with Mometasone cream for now.  I have LP of the vulva and perhaps that's why. The ulcers are eroding and ever present.

    It sounds like you are doing all the right things for now. Making sure you wash every time you pee, use a spray bottle and many here use sodium bicarbonate, a pinch in half a bottle warm water. Airing is good. I never wear  underwear now, it's so much better. 

    Lots of the wise ladies on here will be along with their great advice. Everybody here has a hard time finding what works for them, and then quite often what did work no longer does, but usually something will! We switch about a lot. The best cold pressed extra virgin coconut oil works for me right now. 😀

    Good luck.

    • lynne1945
      lynne1945

      Posted

      The last paragraphs are concerning the soothing creams and washing techniques of course, not the answer to the topical treatment. 

       

    • Abba525
      Abba525 lynne1945

      Posted

      I had the same thing with the ulcers/lesions. The clob ointment burned so bad and seem to make it so much worse. Makes me so nervous to try the testosterone! I have researched like crazy. Thank you for your advice and response.
    • lynne1945
      lynne1945 Abba525

      Posted

      Am curious about the testosterone. I have heard of an oestrogen/ testosterone treatment before but that usually goes hand in hand on alternate days with a steroid treatment to try to bring back the reabsorbed architecture, I believe. Where are you Abba? What did the doctor say about the testosterone and what it does? I must do a bit of research. It's the first time I have heard of this on its own.

      Mind  you, I am new to LS and LP too, only last year I was diagnosed. 

  • powerwoman
    powerwoman Abba525

    Posted

    Hello

    Yes I know how you feel and I sympathize with you.  I too have the same problem.  I have found that reducing sugar in my diet helps drastically.  Also I found that sitz baths compounded the problem.  This takes away the good bacteria in the vagina.  I stopped it!  And I use the estradiol for one week every day to get the eostrogen levels up!  I still am struggling with it as cutting sugar is impossible completely.  Everything turns to sugar.  Also I have anti histomine pills.  I sometimes take 30 mg a day.  I am going back to doctors soon and will ask for strong ones.  I hope you try some of the above.  Reduce acid in your diet too.  OJ is very bad for me.

    Let me know how you get on.

    Best wishes.

    Jan

    x

  • joyce06724
    joyce06724 Abba525

    Posted

    You poor thing, sounds like you're having a nightmare. Re clobetasol, I find when I apply it it stings after about half an hour I have just been to see my dermatologist and although the LS is reasonably quiet I have other issues which I assumed were connected to LS. I asked her about bicarbonate of soda and she adamantly said no as it would dry things up even more down there she only advised Dermal 200 wash or white paraffin. Both are emulsifying creams but the dermal is bearable to wash with. Also you can use it to moisten after. Additionally she said LS rarely goes to the Uretha (which is where my problem is now, aching soreness general discomfort) but it could be LP !!!! Great news. I've been referred to urologist and in the meantime clob, esterol and carry on suffering. She said coconut oil ok if I'm not allergic to it. I feel slightly lucky that I'm not suffering as bad as others on here, but it's still miserable as I'm constantly aware of the irritation apart from when I'm asleep thankfully. 
  • lynne1945
    lynne1945 Abba525

    Posted

    I think what we learn is that there is no 'one size fits all' for these diseases. Unless the doctor treating us has LS or LP themselves, then it seems to me that most of them are still on a learning curve and their instructors are US!

    I have had dozens of tips and helpful advice to try and achieve relief from my symptoms. I've spent untold money sending for and buying creams and oils and lotions. Give everything within reason and common sense a good go. If it doesn't work, move on. We are all different with our treatments and responses to said treatments.

    Personally I find soda bic to be helpful and soothing in the hot sweaty months. Now winter is coming I don't feel I need it, just water. 

    I had great success with Emu oil for months. Then I didn't. Now it's Coconut oil, cold pressed extra virgin food grade. (Actually it's amazing what you can find in your pantry that you can take to your bathroom) Before that is was a psoriasis emulsion.  As for paraffin, I'm personally quite allergic to it. As are others here.

    Things change all the time it seems. 

    Whatever works for you. 

     

  • claire12259
    claire12259 Abba525

    Posted

    Hi Abba, Im sorry you are suffering so much, it truly is a horrible condition that you dont feel you can really discuss with many people! My LS has gone into remission with just a change of diet. I dont use any creams or anything topically. I gave up (well drastically cut) sugar, dairy and gluten. I now have now introduced gluten again and dont seem (touch wood) to be reacting to it. I think sugar and dairy are the big culprits. If that seems like too much hard work to begin with just try cutting all sugar, including fruits, honey etc, which is difficult but a lot of ladies on hear have reaped the benefits. Good luck with your journey into finding out what will give you comfort xxx

     

    • AnneMarie4321
      AnneMarie4321 claire12259

      Posted

      Your post made my day -- it gives me hope I can control with my diet, too. That seems to be the case, as I was fine until my college kids came home a month ago and I indulged in lots of wheat items, ice cream, etc etc. Then kept it up, not as extremely as when they were home, but kept indulging here & there. Cravings were strong once I reintroduced wheat & sugar, so I kept indulging occasionally. A few weeks later, I'm paying the price. Now, I'm back on the wagon!
    • claire12259
      claire12259 AnneMarie4321

      Posted

      I truly hope you can. I think food is like medicine / poison to our bodies. We just have to figure out what is what as everyone is different.  Also I have had other ailments that have been cured by modifying my diet so I am a great believer.  Good luck with staying on the wagon!! X
    • barbara49618
      barbara49618 claire12259

      Posted

      I agree. I stopped the "white foods", processed and sugar. It's been hard but the results are great. When I slip back (I love ice cream) the monster is back within 24 hours. 
  • rosemary82613
    rosemary82613 Abba525

    Posted

    I am so sorry you are suffering so much, the cream is surpose to help not destroy.

    I find sugar makes me worse so not to much chocolate or sweets can't give up altogether. Also I only drink tea and water of course,fruit juice and water half and half, no bottles or cans,

    All you can do is try and see what helps you we are all different

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.