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Estrace/oral estrogen as treatment for LS- need advice

Posted , 9 users are following.

joni56116
joni56116

I am 61 and was diagnosed with LS about 4 yrs ago (but now realize I have had it years longer). When I was diagnosed I was having a period of acute pain/itching that was life altering.  I do have periodic periods of itching, but nothing nearly as severe as what I had 4 years ago. 

Though the itching/pain have been under control, the atrophy lania area has continued. At this rate, soon I think it will completely disappear.

My doctor prescribes clob and oral estrogen (estrace). I was wondering if anyone else out there has used oral estrogen.  I have read on this forum about people using topical estrogen and testosterone creams, but my dr is insistent on the oral estrogen. He says I need this to combat the obvious signs of aging he sees in the vagina.  For a long while I refused to take it because of the risk of breast cancer and concern about gaining weight, but at this point I am trying it simply because I have nothing else to try. 

Please, I would love to hear from anyone else about the use of oral estrogen. 

1 like, 16 replies

16 Replies

  • joni56116
    joni56116

    Posted

    First sentence in second paragraph should have read “...atrophy of the labia area has continued...”
  • Okpeeps
    Okpeeps joni56116

    Posted

    Hi Joni, I’m 62 and diagnosed at age 60 with LS. Like you it’s under control now in the main. I too was put on HRT firstly topical then oral. Have to say it made a huge difference ... off it now after two years. Thankfully it didn’t bring side effects as far as I know so far. I’m now self medicating on magnesium capsules and vitamin D capsules and I believe these are helping me. That said I have to say sex brings its own problems as with a new partner ( Im widowed) and sadly I rip every time we’re intimate. Soul destroying ... Dr says it’s an age thing ... how depressing is that. I believe it’s due to clob use which has thinned the skin. Tried everything ... the usual use patience /lubricant / and understanding partner. Still makes me rip. 

    Hey ho.... if your GP has checked your medical history / and risks of use for estrogen then it’s down to you to decide. Just wanted to say it certainly helped me through the worse of this complaint of LS. Hope I’ve helped a little 

    • Guppy007
      Guppy007 Okpeeps

      Posted

      Hi Okpeeps, the ripping after sex isn't an age thing it's a Lichen Sclerosus thing. To be honest I would think carefully about having sex whilst this is constantly happening as you may need to wait much much longer for healing to fully occur.  LS thickens the skin, which is why the steroid thins it to help heal it.  

    • joni56116
      joni56116 Okpeeps

      Posted

      Thanks. Until now I have read nothing positive about taking the estrogen, so you have given me some encouragement. 

      At a dr appointment some months ago, dr said I had lots of tears (I was not having pain from them). But get this- I had not had sex in the past couple of months! No clue how that is happening. At the time I was using club maybe once a week.  Dr now says he wants me using every day for a while, even if  I  am not experiencing itching/pain, along with taking the estrace. 

      I am very sorry about your difficulty with intimacy.  I feel your pain! After I got past the initial, horrendous pain from when I was first diagnosed, sex has not been painful. But now it is! This is fairly new.  I don’t understand this change. But it doesn’t feel like tearing/skin pain. It feels more internal. This is new, and I don’t understand it.  Maybe the estrogen will help? 

      I pray things will get better for you. 

      (FYI, I was also widowed years ago, remarried)

  • sarb73328
    sarb73328 joni56116

    Posted

    Hi Joni, I too have atrophy and use oestrogen cream internally and all around vulva 3 times a week which I think helps to keep the area lubricated and supple. It has not helped with fusing tho. I was never offered oral oestrogen and have questioned continued use of cream as there is breast cancer in my family but have been assured topical application will not affect breasts. I have been using cream for 5 years now. Hope that helps? Perhaps you can insist on changing to topical application as it seems right to target the atrophied area? 
    • joni56116
      joni56116 sarb73328

      Posted

      Thank you. My dr did give me topical estrogen cream a couple of years ago, but now insistent that I take the pills instead. 
  • lisa7788
    lisa7788 joni56116

    Posted

    Hi Joni,

    I take oral estrogen every day and apply estrace cream 2X a week.  I also use clobetasol 2X a week.  The oral estrogen really keeps things moist which is great.  I don't notice any side effects.  My doc told me technically I could take the oral estrogen till age 65.  I'm 53 right now.  I still have tons of itch so I'm going to see a dermatologist next week and UCLA specialist in a month or so to see why I still have itch (and fusing) and get help with that!  My gyno said clob should prevent fusing, but it didn't do it for me...nor get rid of the itch.

    Lisa

    • joni56116
      joni56116 lisa7788

      Posted

      Thanks for sharing your experience, and you have made me more hopeful a regarding the estrace.  I know how miserable the itching can be, and hope you get some help. Will you please share with us the outcome of your UCLA derm appointment?

      Thank you.

    • lisa7788
      lisa7788 joni56116

      Posted

      Yes, I will be happy to share.  I am keeping my fingers crossed for help!
  • cynthia40883
    cynthia40883 joni56116

    Posted

    My question to all, is how can you take oral estrogen and not have bleeding if you still have a uterus? No one has mentioned progesterone, which I thought would have to be added to balance the estrogen in order not to have bleeding from uterus. Any comments?
    • lisa7788
      lisa7788 cynthia40883

      Posted

      I still have a uterus but don't have bleeding.  I have been told it's not necessary to add progesterone or testosterone.  Does it also have to do if you've gone through menopause?  I have gone through menopause.  I'm 53.

  • linda87994
    linda87994 joni56116

    Posted

    Hi Joni, 

       I was on Oral HRT for 27 years due to early hysterectomy and had no ill effects at all. I was taken off last year at 64 because my docs refuse to prescribe it any longer due to my age and increased health risks. I developed LS shortly after and vaginal atrophy and constant UTI's. Im not on any medication and don't have any health problems, so am waiting to see Gaeny for a second opinion on oral estrogen. I can't use steroid creams or anything with white paraffin in it, I use Aloe Vera Gel twice daily and drink gallons of water to stay hydrated and there's a huge improvement. I'm a huge fan of HRT but everyone's different. Good luck

    • lisa7788
      lisa7788 linda87994

      Posted

      Hi Linda,

      I have LS and I am 53.  I take clob, topical and oral estrogen.  My gyno said I need to go off the oral estrogen "technically" at age 65.  I wonder if they make exceptions for LS.  But then there must be a way to take topical estrogen that won't itch.  That is why I went the oral route.  Maybe they can compound the topical estrogen so it won't itch.  I'll deal with that when it's time for me to go off the oral.  Just some input that might help you.  I'm thinking of trying new steroids too that won't itch.  I heard you can compound those too.  I've heard that steroids are important to use for LS.

      Lisa

    • cynthia40883
      cynthia40883 linda87994

      Posted

      What kind of aloe Vera gel do you use?Looking for a brand that is pure. Is it thick or more like liquid?
    • sarb73328
      sarb73328 lisa7788

      Posted

      Lisa - steroids definitely important to use. I am still using oestrogen cream and I am 65. I believe it helps. 
    • linda87994
      linda87994 cynthia40883

      Posted

      Im in the Uk cynthia, so 99.9% Organic Aloe Vera Gel. Its thick so you can rub it in, but its lasts a long time as you only need a pea size amount
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