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Bad BAD reaction to Estradiol cream!!!!!

Posted , 8 users are following.

pat0423
pat0423

Hi ladies

Finally saw gyn yesterday- he still isn’t ruling out Lichen Sclerosus but diagnosed me as Atrophic ... I’ve been suffering greatly for months and unable to even function properly half the time. 

Anyway he prescribed compounded something (Premarin) cream but insurance denied it ($400!?!!!). Ended up with Estradiol cream - he said on the outside only. 

I used a TINY dab and it burned but I waited. Sat in other room reading and it hit like I couldn’t believe!!! I got a head rush that made me nauseated and dizzy, left me all night with a funny tight feeling in my head. The burning started to get way worse IH MY GOD WORSE. I tried to wash it off ... and it felt like bits of broken glass down there. It’s the next day and it still hurts, worse than a flare... swollen etc 

Has ANYONE ever experienced anything like this?

I’m so done with doctors!!! Nothing has helped. 

Thanks for being here. 

0 likes, 18 replies

18 Replies

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  • susan43705
    susan43705 pat0423

    Posted

    Oh my goodness, that is some reaction.  I haven't used Estradiol, but have Premarin with no reaction, but didn't stay on it long.  We are all looking for alternative therapies here.  HOpefully someone will be able to guide you.

    Sorry about your pain.  Keep googling and maybe you will find an answer.  The internet is a great resource.

    Take care.

  • eileen59440
    eileen59440 pat0423

    Posted

    i was never on estradiol cream but my gyno prescribed premarin and when i went to pick it up they told me it was $200.  being on medicare i could not afford it.  so i went to my old standby - canada pharmacy online where i get other medicine and i got 3 tubes for $77.00.  now i have another fight on my hands - to reduce the cost of prolia injectable (for osteoporsis) from $503 to $42 - it's given twice yearly six months apart but not at that price.

    • pat0423
      pat0423 eileen59440

      Posted

      I’m on Medicare as well, lately all of my rx’s are denied. I like be right at the border and thinking it’s time to get my passport... xoxo 
    • eileen59440
      eileen59440 pat0423

      Posted

      you don't need to travel to canada, they ship it to you, and they are very helpful, even remind me when it's time for a refill.

  • eileen59440
    eileen59440 pat0423

    Posted

    i was never on estradiol cream but my gyno prescribed premarin and when i went to pick it up they told me it was $200.  being on medicare i could not afford it.  so i went to my old standby - canada pharmacy online where i get other medicine and i got 3 tubes for $77.00.  now i have another fight on my hands - to reduce the cost of prolia injectable (for osteoporsis) from $503 to $42 - it's given twice yearly six months apart but not at that price.

  • sue162
    sue162 pat0423

    Posted

    Hi Pat,

    you poor our thing that sounds horrendous.  Have you been using a moisturiser at all Yes is great as it is all natural, no fillers it helps with atrophy as well.  I’m nowhere near as sore as I was before using it.  I darent use oestrogen cream because of the reason you describe.  I’ve read it’s the fillers that cause the problem.  Is there a lower dose oestrogen cream you can try or maybe the soreness of your skin needs sorting out before using the cream.  I have L S as well touch wood it’s under control now thanks to dermovate (clob). X

     

  • Guppy007
    Guppy007 pat0423

    Posted

    Hi Pat, it does sound like you had a serious reaction to the cream.  Perhaps someone on here can suggest something you can use temporarily. In the meantime, I  think you should let your gyno know how you reacted or even try to find another doc that is familiar with LS...ring up and ask! its all so random and frustrating but some doctors are way better than others. 

    I always like to have some steroid cream in my drawer for emergencies because I'm one of those that get pain/soreness in my clitoris, and unfortunately there is nothing else that sorts that out but the steroid cream.

    • sue162
      sue162 Guppy007

      Posted

      Same area gets aggravated Guppy, like you I use the steroid as maintenance, it’s the only thing that stops it getting worse.  It healed my lesions I had before diagnosis,  so maybe Pat has wounds or open skin that needs to heal.  
    • Guppy007
      Guppy007 sue162

      Posted

      Hi Sue, my definition of maintenance is when someone uses the cream weekly to hopefully prevent flare ups...I dont do that....I only use the steroid cream for emergencies, like when something flares up, and so i use it very very rarely.  I just wanted to clarify that point. cheesygrin
    • sue162
      sue162

      Posted

      That’s ok, it’s hard over the keyboard getting things across. Indeed I’ve done well not used it for about ten days now,  if I’m sore I’ll put a small amount on, I treat it like my excema only when I have a flare.  I don’t think I need mine weekly now.  Sometimes I worry I haven’t used it but then think well I don’t feel I need it at the moment.  
  • karen23320
    karen23320 pat0423

    Posted

    Oh Pat! How awful! Were you applying it to open sores/ lesions, or just itchy, painful areas? My dr. Suggested Neosporin and I had a terrible reaction. I think we are all different, but open sores are the worst! I used Emuaid ( homeopathic) and it healed them all in 8 days, no more itching or pain- unless I eat  the wrong thing- ie sugar or wheat.  I tried another cream that had a high dise of Vitamin C antioxidant abd it burbed while I had sores, but now is fine- had to get skin healed- up first. Good luck to you! 
    • susan43705
      susan43705 karen23320

      Posted

      I too find that the Emuaid has helped me a lot.  It's like a miracle cream, but I still battle itching from time to time and the fusing is still there, but it certainly has calmed down the landscape down there.

    • karen23320
      karen23320 susan43705

      Posted

      Well wonder of wonders, tirns out my Mother in Law has the same LS Diagnosis ( did not know we had ANYTHING in common 😜😜wink, anyhow, she told me she tried Emuaid and it was okay but a bit expensive. She now uses Terrasil cream ( on Amazon or from Manufacturer). It is $24 a tube and I bought 2 to get free shipping. I’ll let you know how it compares to Emuaid. If you ate still exoeriencing itching while using it, it might be sonwthing yiu are eating. I hv had no itching until I ate wheat and ice cream. 

    • susan43705
      susan43705 karen23320

      Posted

      Hi Karen,  Right now Emuaid is fine and I will spend anything to get relief and management.  I didn't think the cream was that expensive, not any more so than good women's facial moisturizer.  I hope the Terrasil works for you.  That may be next on my list if Emuaid ceases to be effective.  I have pretty much-eliminated wheat and sugar from my diet, which I think may have helped a bit. I do have pasta from time to time, but was never a fan of sugar.

      Take care, Susan

  • pat0423
    pat0423

    Posted

    Thanks to you all for your kindness and info. I do use moisturizer regularly (vit e suppository, coconut oil like crazy, and v-magic which is eh ok). I haven’t tried emuaid due to cost being so high. 

    Ive been using clobetesol ointment and betamethasone cream (both steroid) with not much success tho sometimes it helps. I truly thought some estrogen cream would be like magic. Boy that clearly is not the answer. 

    My sister offered to send me her brand new tube of Premarin cream, but I don’t want to ever put estrogen on or in my system again!!

    What to do!!?

    Dr wrote me back that my reaction was very unusual and continue with clob 😢

    I will take this into my own hands and heal!!! Once I feel a bit more hopeful and grab onto my powerful warrior woman self!!

    Bless you all ??

    • karen23320
      karen23320 pat0423

      Posted

      Hang in there Pat! And maybe try my M- I- L’s suggestion of Terrasil Max Antibacterial Skin Repair Ointment- only $24. On Amazon....

    • pat0423
      pat0423 karen23320

      Posted

      Thanks both for the laugh 🤣 and suggestion! I’ll check it out. 

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