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vulva specialist

Posted , 9 users are following.

janie27576
janie27576

ladies, i have an appt with a vulva specialist on Oct 9 and i dont know if i should go or not cause i am feeling pretty good and i will be paying 250.00 to 350.00 since my medicare insurance didnt want to give me a referral . just afraid she might just say the same thing as the gyn told me ...but my question is to you ladies who has seen a vulva specialist, does she do something different then a gyn? what questions should i ask her? i know this is stupid but i get so nervous . i dont know what is happening to me , i didnt used to be like this, even my typing all this to you all gets me confused as i want to say alot of things and i dont/ sorry for this ..janie

 

1 like, 8 replies

8 Replies

  • deethebee
    deethebee janie27576

    Posted

    Hello. I'm in the UK and went to see one of the few LS specialists here. She's based on Harley Street and was expensive but my medical insurance did pay. To be honest, although it was reassuring to see a woman who knew the disease well, she said there was no cure.... the only treatment was steroid cream. She told me her LS patients range in age from 3 to 90. She told me that steroids are not as evil as we think and do not cause as much damage as we think. But they only treat the symptoms and in order to save ourselves from this disease we have to use them. All the different alternatives sooth the symptoms as well but none of them cure it either. Sad and depressing really. Hey ho.

    • sarb73328
      sarb73328 deethebee

      Posted

      Thanks, deethebee, this is succinct information from someone who knows and is useful, albeit depressing. I think the reason we get such muddled info from doctors is because they don't have an 'answer' sadly.

       

    • janie27576
      janie27576 deethebee

      Posted

      hi deethebee, yes thats what im afraid of...but i guess i can at least tell myself that a Dr. that really knows got to tell me how far i am on this and what to use or do instead of the gyns that i have seen and really dont care of how im feeling...this is a scary disease we have and i wonder ahd worry later on when i am older what to expect . janie
  • julia2017
    julia2017 janie27576

    Posted

    I am going to a Specialist on the 12th. Every time I think this is controlled I have a day of burning for no apparent reason and notice more fusing. I constantly keep something on whether it's for moisture, or my hormone cream, or the Clobetisol. I never know what it's going to look like. I hope the specialist can at least let me know if I'm a candidate for unfolding the clitoris hood because that's the most pain. The hood is fused and the clitoris exposed. I can update what I am told after the 12th. Maybe it will help.

  • Guppy007
    Guppy007 janie27576

    Posted

    Hi Jane, unless you are suffering from a specific complaint (like Julia) then i dont see the point of it.  What will happen is that she will give you more of her time, simply because you are paying through the nose for it.  I also think that is an extortionate amount to pay. 

    If you can afford it and want a second opinion  then do it, especially If you are a worry wort.  I am not a worry wort and so I see my gyo once a year because I know there is no need to see anyone else unless something changes down below.

    If you decide to go then write a list of questions.  Honestly, I think between all of us on this site we know far more than the doctors when it comes to maintenance and long term care of Lichen sclerosus.  Doctors are handy for an official diagnois and a prescription for the steroid cream, but thats about it in my view.

    Maybe you actually need to speak to someone for anxiety? rather than an LS specialist.  That is not unusual for some women with this condition.

    What questions have you got regarding LS, maybe we can help.

  • karen23320
    karen23320 janie27576

    Posted

    Janie- I too hv an appt with a vulva specialist on Oct 22. I am in remission, no symptoms right now, ( modified diet, used Clob fir 2weeks, 2x a day, and currently I don’t use anything unless I feel a little tingle, then a dan of coconut oil or emuaid),  but I am keeping my appt. because this us one if her areas of specialty and I want to pick her brain. I also have some reduced sensation in my clitoris I would like to address and want to make sure my current treatment plan is sufficient. I guess I am going for peace of mind. 
    • janie27576
      janie27576 karen23320

      Posted

      karen, i guess thats what i want peace of mind that i am doing the best that i can ..i am ok and i think i am in remission and then i get a burning or like it hurts on one side up close to the clitoris,, i dont know if it comes from eating something or cause i started soaking in borax....i use emuaid or the aloe mix too...i ate rice twice in two days so maybe thats it..i also have like a skin or something that i was thinkin that maybe it part of the inner minora that unfusin ..who knows , up til now i hadnt looked down there as much as i do now and didnt know what all was called down there..still figureing it out..yes i better keep my appt. see what she tells me and i am prayin its worth it..thank you karen.. janie
  • beverly52803
    beverly52803 janie27576

    Posted

    janie, I don't think the specialist will give you more info than you have gotten from your gyn or the women on the forum. Maybe you can postpone the appointment to a time when the LS is giving you a problem? Of course, if you feel you should see her for your peace of mind, that is up to you.

    I have been helped from the hormone cream as well as the steroid cream. I use a weaker steroid than what everyone else seems to use. Perhaps because my symptoms were mild. I go back to see my gyn in a couple of weeks. Will post if she gives me any new info or a change to the regime. Right now I use a tiny amount of the steroid twice a week and a pea size amount of the estradiol cream along with some yeast cream nightly. The hormone cream is what makes me feel sore actually, so I take a night off now and then. According to my doc the lack of estrogen caused the LS. Do you use a hormone cream?

    Not everyone who posts here mentions using one, I notice.

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