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Close to giving up

Posted , 14 users are following.

lrebecca
lrebecca

This may be a long old post so apologies and thank you for your time.

I am 48 and diagnosed via biopsy last November '14. Saw a GP a year before this who suspected LS but did not refer me till October.

I think extreme stress has caused my LS to rear it's ugly self.

A single parent -2 years ago I lost my house,my two children moved away and I had to move back to my mums tiny house,she is 81. The contents of my 3 bed house is in storage at high monthly cost. 

I managed to get a job in a busy ward at a hospital with 4 hrs commute per day via public transport. I had to have all the jabs needed although I hated doing so,interestingly my first flare started not long after the first HEP B jab (maybe for another discussion?) also I developed severe arthritis in my big toe joint at same time.

Anyway,to cut a very long story shorter - I lost my job after a year as I was very poorly with severe fatigue,dizziness and weakness. I herniated disc between C6/7 in my neck and so lost my job.

I am unempolyed and my sickness has gone from bad to worse. I suffer from chronic gastritis,neck/arm pain,weakness,chronic insomnia,irregular heartbeat (ecctopics/pvs), anxiety and depression.

The gulit of having to live with my mum and me losing everything  and coping with it all is just too much. I have money debt and wonder what job I can do now.

So back to LS.  This disease is horrific.

I have a beuatiful understanding young (31) boyfriend who I've been with for 2+1/2 years,he is amazing but I am scared.

Over the last 4 weeks the skin over my clitoris has grown over and fused -IN JUST A MONTH!!  My sensation there has almost gone and he says he can feel the difference (ahem...sorry sinsitive ones) but he can feel it isn't there any more and does not move around. I spent last night in tears.

What can I do?

I am afraid that I will push my boyfriend away or he will find it too much to cope with this and all my other stuff. I know that this would be my last relationship with anyone as I would not want another to see my disfigured genitals. I feel ugly and somehow dirty. I have turned from a happy bouncy person who enjoyed life onto someone who is very sad and thinking ahead is too hard.

I had no idea this disease could affect the mind and body in such a ditructive way.

Thank you kindly and any ideas how to ufuse the clitorul hood would be very appreciated. I read somewhere about using a cotton bud and the steroid cream?

 

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  • helen99763
    helen99763 lrebecca

    Posted

    Good heavens, Irebecca - so sorry that you are in such distress!  This website is right on target with advice from people who have had the worst of experiences but who are finding answers.  All good advice. Must use the clobetasol as prescribed  - baking soda  rinses and coconut oil I find very helpful too.  I mix the coconut oil with a Celadrin cream which contains menthol - I think the menthol helps me feel fresh and calms the stinging sensation.
  • lrebecca
    lrebecca

    Posted

    Gosh...it's been two months since I last posted.

    The fusion around my clitoris has increased and I'm starting to think the Clob ointment is/has speeded this up? 

    I'm also afraid as where it has fused over there is a tiny gap at the top and I think there may be some infection there now as it it slightly swollen,red and feels sore and bruised.

    My recent app with my derm was 4 weeks back and she agreed that the fusing was advancing quickly and wants to see me next month.

    I'm still having problems with a horrid smelling discharge that has been tested and is neither thrush or bacterial vaginosis. I have to use cotton panty liners or it goes through my underwear...and it smells!

    Not having a great time with all this.

    What do I need to do regarding this...any advice please?

    Thank you.

    • Guppy007
      Guppy007 lrebecca

      Posted

      Hi, This is a long thread and I am not sure whether someone mentioned this, but I think you need to see a specialist, urgently! someone that is knowledgeable with this condition, not all dermatologists are, some don't even look at your undercarriage, never mind even understanding such a condition as Lichen Schlerosus.

      I cant imagine the Clob has made it worst though, its possible, but unlikely as you said In your first post that  the skin over your clitoris had grown over and fused -IN JUST A MONTH.  I know its hard sometimes looking in that area, and you cant always tell whether its worst or better or whatever!! I understand that, and I am just concerned for you, that two months have passed and your still pretty much where you were when you first posted, you have rapid fusion, discharge, and now a sore area that sounds painful  

      I am guessing that you have two separate issues here, the LS and something else and its time you got some help from someone soon.

    • hanny32508
      hanny32508 lrebecca

      Posted

      While you have to wait for seeing a specialist, I suggest go sit in a baking soda bath or rinse with a bit of baking soda water every time after urinating.  At least you keep, whatever infection is playing, at bay.  (Don't use too much baking soda in the water, three pinches in a spray bottle is plenty.  In the bath one third of a cup will do. In a sitz bath one to two teaspoons)  

      Make sure you use only tiny bits of Glob.  I also have my thoughts with Glob.  At one time I probably used way too much and the fusing was rampant overnight.  But for the same token I might be entirely wrong.  

      Are you also watching the sugar intake?  Are you keeping the stress level down?  Diet has made a difference with me.  Also taking life a little easier has made a difference.  

      Hope this helps you in some way.  

    • suedm
      suedm lrebecca

      Posted

      Hi Rebecca, call the appointments clerk of your specialist. Make it clear you HAVE to have your appointment brought forward. Go to your GP and say you want a 2nd opinion, try and find a vulval  clinic - or a gynaecologist if necessary, ask the nurse at your GP to do a hig vaginal swab- CAREFULLY! you need to know what is causing a smelly discharge- if you have been in a relationship you may have an STD that needs clearing up - What you DON'T do is to ignore it or hhope for the best -

      Make sure your are scrupulous with your hygiene- check with a mirror that you have removed the previous day's lotions and potions dab dry and Do the routine. Ensure that you do not put your fingers into the pots of ointment creams etc - that is an easy way to reinfect yourself. Always use a new cotton bud to dip into the jars of coconut oil etc. Don't use a towel or flannel to wash wipe yourself- unless it has been freshly washed  - AND ironed(hot)- to remove possible infective material

      If you have children around dont use their towels - they are germ factories - the children i mean - well maybe their towels etc too!

      You are having a really horrid time - i do feel for you - but take heart it WILL eventually clear up. The panty liners ideally should be bleach free and of course there is the usual advice about not using biological washing powders - or bleach - or nice smelling sprays soaps around the area. If you change your towels/ liners regularly (And wash / sluice the area  before applying the barriers etc and using a clean liner) it is only you who will smell the discharge so dont worry on that score.

      If you find you cant get an earlier appointment then phone up the consultants secretary - the switch board of the clinic/hosp should tell you who that is and when they are in the building- explain that you NEED to see the consultant urgently - normally that will get you an appoointment in the next clinic - or sooner

      Good Luck

      Sue

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