Newly Diagnosed

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Hi all, I was diagnosed with LS in June last year the day after my 28th birthday. At the time of diagnosis, my labia minor had disappeared and my clitoris was starting to fuse over. For 8 years I had been seeing different drs because of tearing during sex, who had told me that I was using the wrong lube, that I should try a different position and one even told me that my partner was to big so maybe I should find someone else!! I was devastated to learn that this could have been diagnosed years ago and that maybe I would still have my labia minor. In the last few months my partner of 10 years and I have been going to a sex therapist and we were on the brink of breaking up because I have been just such a wreck. Last night was the first time we had sex in 7 months and I was bleeding profusely (incredibly embarrassing). I'm currently seeing a vulval dermatologist who is unsure of what I have but thinks it is most likely LS and cervical polyps.

Does anyone else here also have cervial polyps with LS or am I just super unlucky? 

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  • Posted

    Hi there, some women with LS have such thin skin that it breaks and tears easily, especially during sex which causes bleeding.  The best thing you can do is find someone that knows what they are doing! That means looking for a vulva clinic near to where you live.  Failing that, look at gynecologists or dermatologists, and before making the appointment make sure that they are familiar with LS.  Unfortunately sex can be difficult with LS.  Look at the 'Mona Lisa touch' online some women have found this helpful.  

    Also you need to buy some dilators and start using them every day in the shower, over time this will stretch your Vjay enabling you to have sex more easily with your boyfriend.  I am married to a large man and I know the problems that it can cause.  In the meantime do not have sex if you are sore down below it is a recipe for disaster.  When you are able to resume sex one tip is to use KY on a dilator first before having sex and it helps enormously.

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  • Posted

    Wow. You've had a rough time. I had LS diagnosed 4 years ago. I have the same vulvar issues you do, except for the polyps. I'm sorry you've had so much trouble. '( I've had some reversal of the damage done to my vulva with topical Estrace. Ask your doctor if that's an option. The most important thing is to stop having sex until it's healed! That's what my doctor told me. I also use Emuaid which really helps. And Recticare for pain. I feel for you. I know how difficult LS is. Take care. To be sure you have LS get a biopsy. Then you know for sure what you have. I'd also consider getting a Gyn doctor who is very familiar with LS

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    • Posted

      I was given Diprosone ointment to use by my initial Gyn dr so by the time I got to see the dermatologist and get a biopsy, the result was inconclusive because of the steroids. They can't see any other diagnosis other than LS and I really don't want to go through a biopsy again (once is enough for anyone!)

      Have you ever tried emu oil?

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    • Posted

      One biopsy is enough I agree. If your original Dr gave you a steroid, then you prob do have LS. Otherwise they wouldn't give you the steroid. I use Emuaid which prob comes from emu oil? If you try it I'd wait at least one hour after the steroid cream to give it time to work. Best wishes Jac89

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    • Posted

      Actually according to Department of health, a doctor can just look at the vulva and diagnose LS. Sometimes they'll do a biopsy to confirm it, but it's not required. Save yourself some pain. I would see a vulvA specialist if you can.

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    • Posted

      You are welcome. We all need to stick together to get through this.  It is a very depressing problem... Message me if you want to talk sometime. I'm happy to assist. smilesmile

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