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thought i was alone

Posted , 6 users are following.

nannylin
nannylin

I have suffered with LS for about 15 years and had no idea there were so many other women suffering as I was. After being diagnosed I was given a course of Dermovate cream which helped with the intense itching. Over time my labia have fused and sex is impossible. I have recently been advised to see a dermatologist to see if this will respond to treatment or if surgery will be needed. I also suffer from Crohns disease which is flaring at the moment so I am feeling physically ill and pretty depressed but to know this support is here is fantastic. I am not alone.

2 likes, 34 replies

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  • Morrell1951
    Morrell1951 nannylin

    Posted

    Hi Nannylin, so sorry to hear your LS is so bad. You mention 'a course' of Dermovate, as if it's temporary, just for symptom relief. Most of us have accepted that it's a permanent treatment, although we can level out at twice a week, using so little that a 50 g. tube lasts a whole year.

    Do you just know you've had it 15 years after a recent diagnosis, or were you actually diagnosed 15 years ago? I was diagnosed at age 61 after having it my whole life. Sex is over and I don't see any surgery in my future. I thought it wasn't really an option, at least I don't believe my clitoral hood can ever be zipped open. Some girls have Fenton's procedure to enlarge the vaginal opening...

    • nannylin
      nannylin Morrell1951

      Posted

      Hi thanks for the reply. I was diagnosed 15 years ago and I suppose wasn't really given a lot of advice at the time just a tube of cream and a couple of followup appointments. I went back to the clinic a few weeks ago as I was in so much pain and where I had fused was very swollen. I actually had an abscess which was sorted out with antibiotics and am much more comfortable but feel I really must get more help and see a dermatologist who specialises in this sort of thing. I think embarrassment has held me back and having had so many intimate tests for the Crohns really puts you off having anything else looked at. I don't think surgery would be for me either I have had enough of that. 
    • Morrell1951
      Morrell1951 nannylin

      Posted

      Nannylin, that's exactly what happened to me last summer. Right over my clitoris where it had almost finished fusing shut, but still let some bacteria and oxygen in, an abcess grew enormous and so painful. I didn't go to emergency till it had popped (yuck!). The doctor took one look and said, well, you're quite atrophied. I think he just decided to send me to a gynae for who knows what, because he didn't know it was LS. The gynae took one glance and knew. I feel I'm in good hands now. I went for my six-month checkup and she was happy with my condition. I go again soon. I think maybe 15 years ago although you were sort of lucky to at least know what you had, they weren't really all up on it.

      You need to stick with the Dermovate. They say after surgery it just scars over anyway. Look up the Koebner Phenomenon in LS and think about whether a scalpel is the answer. Even a trip to the dentist triggers a flare in my psoriasis. Young women with lots of money can go to Italy or Hollywood and have stem cell treatment.

    • nannylin
      nannylin Morrell1951

      Posted

      Wow I really felt like some sort of freak with that abscess, mine burst the day after I got the antibiotics and was in exactly the same place. The relief when it burst was immediate but has left me nervous of it happening again. I too think surgery, unless absolutely necessary, is not for me I cannot imagine how painful it must be and I have had major surgery so have done pain !!  As soon as this Crohns flare settles and I can safely leave the loo I will go to clinic and get more cream and proper advice. I have just started a course of steroids ( hence wide awake at 3.30am) so should start to feel better soon.
    • Morrell1951
      Morrell1951 nannylin

      Posted

      I have been afraid in the hot weather that I could get that abscess again, but really I'm pretty sure it had to do with the fusing being incomplete.

      So, with Crohns you have a lot of 'effluent'? I know that's harsh on the old LS, just from having occasional loose BMs.

      I wonder, now, thinking back, whether having my tubes tied, those metal clips, if they were an irritant... Let's not even talk about the IUD that was lodged sideways in my twenties. The epsiotomy... All triggered LS flares.

  • Morrell1951
    Morrell1951 nannylin

    Posted

    I expect you'll hear from some LSers with Crohn's. Hanging out here, I'm seeing definite patterns, Crohn's, thyroid trouble... All the research says is that LS 'seems' to be an auto-immune disorder. That's so unhelpful. I think you're right and there are more of us than the stats say. There must be so many post-menopausal women who have LS and think it's just 'the way it is'.
  • hotlips
    hotlips nannylin

    Posted

    Alright 'Lin,

    Flare ups miserable, but sadly, they're also a part and parcel of LS.  My heart goes out to you.  Same time i say a bittersweet 'welcome' i can only offer my condolences that you too have being diagnosed with this gawd awful condition..  i suppose the 'good news' is you've been diagnosed, and can therefore be treated properly.  Tackling it in to remission is what you need to do.  stick to the routine. check yourself regularly.  coz the bad news is...is doesnt get any better.  this forum is a great point of contact, - forgive me if i'm not as 'up beat' about it as most in acceptance and realisation of this horrible, wretched affliction.

    There is NOTHING good about LS.  Dermovates was great for me.  got rid of my 'active' lichen, but i've recently reacted and its damaged my healthy skin so keep up the routine and a watchful eye on changes 'downstairs'.

    Athough i havent got it myself, i know that Crohns is no fun either.  If surgery beckons, they will avoid your exterior 'lady bits' at every cost (it scars freely on its own).  Bottom line, the scary words like 'auto-immune' mean our body thinks our fun centre is an open wound as is trying to 'heal' it. researched. keep on the routine. enjoy whatever bits you've got while you've got them.  good luck princess xxx

    • nannylin
      nannylin hotlips

      Posted

      Thanks for the replies it held to know you are not allow and there are others who know exactly the aim and discomfort you are going through. Yep crohns is crap in every sense of the word but we have to lay the cards we are dealt and I know there are others who have a worse time than me ( still feel a bit sorry for myself though). At least crohns is better known I don't know anyone else with LS but then is not the sort of thing that I find easy to talk about ( blame my upbringing) thanks for the support .
  • Roselee
    Roselee nannylin

    Posted

    Hello , I hope you don't mind me asking , if you have been diagnosed early, before much fusing and  atrophy, if I.keep a maintenace of Dermovate 1-2 a week, do things still deteriorate over time. I read lots of forums and am not sure if whether.  some of the unfortunate  suffers have been diagnosed when the damage has already happened or if it progresses over time anyway. 
    • nannylin
      nannylin Roselee

      Posted

      Hi Roselee I was just in the early stages when diagnosed but not told to keep using the medication I thought it was only for when it flared up and the fusing happened so slowly. Keep a good check on yourself and seek help if you find any changes I ignored things for too long. Hope this helps.
    • Morrell1951
      Morrell1951 Roselee

      Posted

      Rosalee, I wish I'd been diagnosed in my twenties when Clobetasol (Dermovate) might have prevented my fusing and atrophy. I'm banking on it preventing any more shrinkage, over the rest of my life. (I'm 62.)
  • Roselee
    Roselee nannylin

    Posted

    Thank you nanny li, my uro gyny actually told me after the initial 3mths of use to use it as and when I get a flare up, and then 2time for a week. But because I have been reading lots of forums, I have seen to use it as a maintenance, which is what I am doing to try to prevent things from going much worse or at least slow things down. 

     

  • Roselee
    Roselee nannylin

    Posted

    It is such a shame there is not enough doctors that specialise in this condition as most do not know enough about it. It's such a horrible condition my heart goes out to all LS suffere. 
  • Roselee
    Roselee nannylin

    Posted

    Hi morrell, I am 58 and got diagnosed last year, I suppose I am lucky that it was found before things got any worse, I got diagnosed during a cystoscopy for recurrent UTI, I did not even know I had anything wrong so it came as a bit of a shock. I am still trying to get my head round it, and worry what I have to look forward too in the future. I am grateful to all who write on the forum as at least I can learn what to try to do to slow thing down. X
    • Morrell1951
      Morrell1951 Roselee

      Posted

      Rosalee, if you were young, I wouldn't say this, but at our age I believe we should feel free to opt out of sex any time things down there are rough at all. I went though a dating period at exactly your age and I'm now (in hindsight) appalled at how insensitive mature men who're about to 'get lucky' can be. Older men should be educated: if an older lady is 'Like a Virgin' THAT'S NOT A GOOD THING! I probaby did some extra damage, tearing and the scarring that follows tearing, during those few years. Fortunately I've settled down with a good man who doesn't mind just being affectionate. And we also don't need the stress of worrying about his 'needs'. Sorry, that's my special soapbox. I have no idea where you are on this topic.
    • suzanne00
      suzanne00 Roselee

      Posted

      Hi Roselee--I also just turned 58 and was given this diagnosis a few months ago (though didn't start treatment because I didn't want the biopsy that my USA docs wanted me to have). Scheduled to see a doctor for treatment this next week.  I didn't know that there was anything wrong except that sex got more and more uncomfortable starting about a year ago.  I really haven't had a lot of symptoms besides that (and white spots), though recently I've been feeling more burning and irritation.  I am shocked that this could have progressed so quickly that sex is really difficult to impossible and wonder if it won't get better and will get worse.  This is not good and I know I'm pretty concerned about this.  Thanks for sharing your concerns, too.  Suzanne
    • suzanne00
      suzanne00 Morrell1951

      Posted

      Hi Morrell--You are lucky to have found a man like yours.  I worry that I will not be such a great catch as this is pretty important to my partner.  Suzanne
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