Doctor experiences

Posted , 19 users are following.

I was diagnosed around April this year.  Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition.  Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....

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  • Posted

    I usually get a prescription for a tube of  Clobetasol with one renewal on it whenever I go to the clinic. I have never had to fill the second one because the prescription expires after one year and I never usually finish the first tube in that time. I have only been using it for flare ups becuse I was warned when I first got it to only use it sparingly and to be very careful about washing your hands after use. I am in the middle of a flare up right now so I have been using it twice a day and I usually do that for about a week. I find that even after it has been open for about a year it still works fine. The thing with drugs passing their expirely date is, it doesn't stop working all together. It just makes it less potent,. So you will still get some benefit from using it, but it may not be as strong so you may need to use a little  more of it. 
  • Posted

    It is interesting that quite a few of us are artists!... it seems a bit strange!!

    I paint Abstract paintings in acrylic and oils on large canvasses, and sell the originals, and prints, through Fine Art America.   That being said, my creativity has suffered recently, health wise it seems that there is always something, and therefore I am just really focused on getting myself back to good health for the remainder of 2014...

    What about the rest of you painters? What is your medium and what do you like to paint?

     

    • Posted

      I've quit painting realistic watercolours of dead leaves on water and now enjoy learning new crafts like needle-turned appliqué, knitting socks & lace, backstrap weaving, and cabinet making.
    • Posted

      I like to give my self a theme and try to express.  But like you Guppy, at present I only just keep going in the studio because it is relaxing and good for the soul, no big accomplishments, the main focus is on getting better healthwise.
    • Posted

      Nice 'sidelines', just something different.  Thinking about woodcarving, have done it before and harvested some nice wood a while back.  Need some new tools, so tempting.
    • Posted

      That is interesting that quite a few of us are artists!  I actually have a degree both in graphic design as well as interactive multimedia. I used to do graphic design under my own company name but I don't do that anymore. Now I work retail and I do crafts on the side. Anything from felting to card making to quilling. I actually just finished publishing my very first paper quilling craft book a couple weeks ago called Pond Life: Paper Quilling Projects that is selling on the American and the European Amazon websites. I am really excited about that. 
    • Posted

      Catching up on this forum after three very busy weeks - getting my paintings finished for a local art show!!!  Cannot believe so many of us share this interest!  Love sewing too and taking a quilting course.  My favourite place is my craft room.
    • Posted

      You, too??!! Ha, there does seem to be a pattern emerging. I just finished building cabinets and making curtains in a little 100 square foot cabin in the yard. It's my sewing room, guest cabin and the best nap place ever.
    • Posted

      This is very interesting, I'm actually doing a workshop in stained glass work soon. I'm also interested in furniture restoration, would love to have a go at cabinets making but can't find anywhere to give it a try. 
  • Posted

    I went to a family doctor because I thought I had a re-occuring yeast infection. She told me she had no idea what was wrong and basically told me to go home and said I probably had a bad diet and was lazy (I eat extremely healthy, am a healthy weight and excersize often so this was not acceptable). She told me to come back in a year if the problem didn't go away! I had to insist that she refer me to a specialist. Luckily the gyn she refered me to was VERY good and he saw an issue right away and gave me a biopsy. I think that we need to figure out a way to help doctors become more aware of this disease. I bet you a lot of people are experiencing the same doctor care that we did and are not insisting on second opinions. 
    • Posted

      I agree...what I am concerned about from reading the posts on this site is that there appears to more and more woman coming forward with this condition, I always thought it was rare, but perhaps its not, perhaps it never was, or maybe it is just becoming more prevalent, this is something I dont know.  Also i think that  woman keep quiet about this condition, they dont dont want to talk about it to their loved ones, or friends because there is something " horrible"  almost tabu about this condition, I cannot think of the correct word to describe what I mean..but I am sure you get the gist of it.

       

    • Posted

      I bet this is happening a lot -  don't worry, come back in a year.  Sad, sad, sad. Only the determination of the patient can turn this around.  But what if you're not that type of a person?  
    • Posted

      I compare it with the time my mother had breast cancer and had to miss one breast.  She was considered "an incomplete woman".  I would almost think that this very item is still playing a part in "us" not being so willing to share that we have LS.  
    • Posted

      Yes Hanny - You are right, I haven't shared this with any of my friends

      because I feel like an incomplete woman (Looking like a 'Barbie')

      In two weeks I am going into my old city to see my doctor there - I moved

      away 12 years ago and haven't had any doctor here see me for this

      problem.  I am using the baking soda in a spray bottle and have had

      some success but I don't expect huge miracles.

       

  • Posted

    I think LS is a very good example of something individuals can pretty much diagnose themselves with the help of the internet. I keep reading that LS is often misdiagnosed as thrush and herpes. We know our longterm pattern, while a doctor only knows what she sees today.

    I smack my head when I think I did self-diagnose years before I went to a gynae about it. That would be about ten years ago. There was much less info online back then. I think the best thing we can do is spread the word among women, who can all easily check into their symptoms. A campaign of 'use that shaving mirror for health, not for going Brazilian!'

    I know from my own experience I went undiagnosed for decades mostly because I was denying I had any discomfort every time I had sex. I was sure I couldn't keep a mate if I withheld sex. Often it was a yeast infection and the cream cured it. When I was leaving a marriage in 1988 at age 37 I actually wrote a letter to my husband explaining that his obsession with sex had permanently turned me off it and that eight years of virtual celibacy in our deadlocked union had caused the 'use it or lose it' phenomenon and my labia had begun to fuse over my clitoris. But did I tell a doctor about my concern? No. Fortunately, resuming sex re-opened my labia and I was good for another decade or so.

    • Posted

      To be fair to myself, the only thing I though was 'lichen sclerosus' was the white skin on my perineum. And to me that was just an ugly thing, not a health problem. I probably landed ona few pictures that looked like my skin, found the name and figured it was harmless. The tear that always came back through the middle of that patch – I thought that was psoriasis in a weak spot where my episiotomy scar was. All the other thinks, itching and boils, I didn't find enough info to put it together and I didn't even think to talk to a gynae about the whole set of symptoms. I was escaping pap smears after two years of bipsies and conizations of my cervix. My attitude was that I was either healthy or I'd die quickly of cancer because I wouldn't have chemo.

      I don't think this pattern of denial and mistaken thinking is all that rare. I'm not generally a stupid woman.

    • Posted

      Not rare at all Morrell.  I don't consider myself stupid either.  Yet I found logic where there was none -  giving birth, that 'snip'  was probably bothering me.  Never did I think that there was some kind of disease.  Besides, I had never examined myself 'at the bottom' the way I 'document' it's progress today.  

      What's more - I had never heard of LS.  

      I think it is important that we tell the world.  Awareness is the first cure.  Early detection can help many younger people.  

    • Posted

      I agree that people are capable of diagnosing this condition through research on the internet, because once you are aware of the condition it is simple enough to dig around and find out more info...

      Your experience with your ex sounds awful, and I guess life must be a lot calmer now you are with a different partner.

      I haven't had sex with my husband for about a year now, due to many different health issues, but I am now thinking I should try because I have a feeling I may struggle with it, hes very well endowed  and I really  don't want to get a nasty shock and find out that it has become impossible.... now that would be depressing!! 

      Its strange realizing that I have in fact had LS for many years, but I just didn't realize it, it was pretty dormant, and now of course I know what those little cuts, sores, boils, etc were all those years ago. 

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