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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?

 

0 likes, 60 replies

60 Replies

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  • athena93317
    athena93317 lrebecca

    Posted

    You need clobetasol steroid ointment I don't know if your using it but you need to soak in a hot bath for 15 to 20 min then apply for 90 seconds you should watch Dr Goldstein video (see link below). You should be able to find it as far as emotional you need to be strong it is very hard to stay confident in this situation but the only reason your boyfriend would leave you is if you let it get to you so much that you change you have to remember you are beautiful we are not are vaginas there is more to us then just sex you have to believe in yourself and LOVE yourself because you are going threw this struggle it will make you stronger try to become aware of your thoughts when you think negative thoughts replace it with a positive one soon it will become habit don't think of yourself as a women that is disfigured think of yourself as a strong beautiful fun loving woman and make sure to do all you can health wise I have stopped eating gluten witch had helped and I'm drinking wheat grass everyday and probiotics and vitamins for the immune system I've noticed a big improvement plus the clobetasol if course I hope this helps make sure to watch the video it tells you the correct way to use the ointment witch is very important and remember you can't stop living because you have this disease don't let yourself become a victim we all have are moments but we have to take control or it will control us

    Emis Moderator comment: I have removed the link as users can post the one below which includes a link to the discussion re Dr Goldstein's video.

    https://patient.info/forums/discuss/new-to-ls-start-here-297241

    • lrebecca
      lrebecca athena93317

      Posted

      Thanks so much athena, your post made me cry, you are spot on.

      I will watch the video later today when I can have some proper concentration time and get back to you.

      Very grateful 

      L

  • hanny32508
    hanny32508 lrebecca

    Posted

    Hi lucierebecca,

    Stress is a bad one for health, no doubt.  I'll add some practical things you can do to make 'LS life' a bit easier.  First of all:  Look at your diet.  Sugar is a bad one for LS and easy to avoid.  So is alcohol.  And caffeine.  A person thinks that we need sugar, alcohol and caffeine to cope with stress.  The opposite is true.  Without these items you lighten the load instead.

    Next on the list:  take baking soda baths (1/3 cup in a bath) Sit in it as long as the temperature of the water is comfortable.  

    In addition:  find yourself a spray bottle, the kind of bottle women use after giving birth.  Put three pinches of baking soda in there and fill with comfortable warm water.  Rinse your bottom after every bathroom visit and then apply coconut oil.  Become diligent about this and you may see that the fusing very slowly deminishes.  (my personal experience)  

    Next:  Look into an alkaline diet - which means:  no gluten, no dairy, little meat, lots of vegies.  It's about alkalinity versus accidity.  

    Result:  You will gradually feel much better.  The LS won't be so viscious, or may go dormant.

    From October last year to January this year, I'm as good as free from fusing.  Clitoris can be felt again.  

    Take advantage of this time with mom and look very seriously and diligently after self!  

    More questions - just ask.    

    • lrebecca
      lrebecca hanny32508

      Posted

      Thanks so much. I feel very blessed to have all the responses I have and some great advice.

      Coincidence that I have been looking into alkaline diet this evening.

      Not sure where to start as my diet is already limited because of my sensitive stomach and gut - the gastritis.  

      I do not drink tea or coffee or fizzy drinks-not for years.

      I have been tee-total alcohol free for about 12 years and do not smoke. 

      I am strict vegetarian for 37 years- no fish.

      I cannot eat raw fruit or vegetables or salads,cooked veg only and bananas.

      I eat oats with osugar free oat milk and have soups mostly.

      My downfall and sugar hit is hot chocolate made with oat or soya milk- I know I will have to cut this out,but apart from that I eat very little sugar. Is maple syrup ok?  

      I want to feel better,my gut is a mess of spasm and pain.

      Baking soda on my shopping list and try and source a spray bottle. Already use organic coconut oil to moisturise.

      I'm very happy you have had success with your lady parts,it is so good to hear and gives us all hope.

      Thank you kindly.

    • hanny32508
      hanny32508 lrebecca

      Posted

      You are already on your way!  

      Note:  I urge you to leave out the last sugar parts, every sugar is basically aggrevating things.  Hot chocolate - try to learn to live without. Has caffeine and sugar.  I gave myself some time to 'fine tune' my diet.  Some habits and cravings are hard to overcome.  Till I heard a doctor say that every bit of sugar will set you back.  So there went my last weakness -liqorice.  (has sugar and gluten in it)

      Another note - your vegetarian diet may have some items in it that don't serve you well. In case you start to follow an alkaline diet - check the list of alkaline food.  I started to eat salmon, it has omega 3 and that's very beneficial for auto immune disease, LS.  Or you can take omega 3 as a capsule.  Check the list for alkaline food.  There's probably one on the internet you can find.  And I use coconut oil also in meals.  For instance - mix some coconut oil in with quinoa after it has been cooked and is still warm.  

      And ... you're most welcome!

  • Guppy007
    Guppy007 lrebecca

    Posted

    Hi, Sometimes getting things off your chest can really help you to feel calmer.  

    I do think you have a lot on your plate, and maybe if you sit down and write down everything that needs to be addressed, a kind of plan, starting off with the most important issues first, which is of course your Lichen Schlerosus, that might help.

     Last year I was diagnosed with  GERD which is not quite the same, but similar, as Gastritis, and they are often treated the same, and so I know what its like to have horrible stomach problems. I resolved them all when I went Gluten free, Dairy free, stopped smoking, and saw a chiropractor and I am almost back to normal, and so whenever I feel bilious I take two tsps Braggs Apple Cider vinegar, and it works every time, its a very well know natural remedy and maybe you might want to try it, if your not taking any tablets.

     

    Thank goodness you have a supportive and loving boyfriend, that counts for a lot and I don't think you should worry about living with your mum as I am sure she is very happy to have you with her.

    Do let us know how you get on.

     

    • lrebecca
      lrebecca Guppy007

      Posted

      Thank you Guppy for your advice and suggestions.

      Can you get Braggs Apple Cider vinegar in the UK?

      I'm not taking any medication as they make the pain worse.

      I am looking into changing my diet,I'm keen to try almost anything.

       

    • Guppy007
      Guppy007 lrebecca

      Posted

      Hi Lucie, You should be able to purchase this from a health food store.   I meant to say that you can take the 2 tsp in an 8oz glass of water, and there is no harm in taking it twice a day, this product also keeps Candida at bay, so its good stuff!!....I am pleased to hear your not taking any tablets, because quite honestly they will make you worst, and I do not say that lightly.  

      Try to get this asap as I think you will be amazed!   

      Bearing in mind your stomach issues, ​I would seriously consider cutting out dairy for a month to see how you get on, its really not that difficult, and nowadays you can buy really good lactose free substitutes.   I think its really worth trying things a step at a time.

    • lrebecca
      lrebecca Guppy007

      Posted

      I will try the local health food store on Thursday for the Braggs.

      As for the dairy,I am and have been virtually dairy free for years. I drink unsweetened oat milk and unsweetened soya milk occasionally. I don't eat dairy icecream or yoghurts and my cheese intake is almost non existent to the extent of a couple of times a year if that-and when I do ...boy do I pay for it. So years ago I eliminated dairy pretty much. It is getting to the point that my diet is so limited I'm sure I must be deficient somewhere,losing weight recently too (no bad thing) wink

  • Bridge_of_Sighs
    Bridge_of_Sighs lrebecca

    Posted

    Good morning Lucie; I've been meaning to get back to you and this is the first chance I've had. I just want to add to the wonderful posts people have put here;  we haven't all met this disease fighting. It is a real blow and needs time to come to terms with. Don't compare yourself unfavourably because you haven't hit it fighting! After diagnosis I cried and felt isolated for two years, I'd been depressed for quite a while before that, and really miserable. I was going through the menopause early and it wasn't picked up so my hormones were all over the place and I thought my world was falling apart. A house move marked a new start, a new doctor and a diagnosis. And a different sort of depression as I realised the impact LS would have on my life. I'm very lucky to have a wonderful supportive partner who has really helped me through this by wanting to be with me because of who I am rather than what I can give him (ie.sex), and now two years later I'm ready to fight back. It took time, but here I am now!

    You've got a lot on your plate. That cheese analogy was great, I'm going to use it too. Give yourself time to learn the ins and outs of LS, try the things people suggest, find what works for you and, most importantly, look after yourself.

    I've just bought myself a spritz bottle (80p Sainsbury's) and filled it this morning, looking forward to another weapon in my armoury!

    Also St Michael's Hospital in Bristol has a Vulval Dermatology Unit. The main Gynae is a man, who I thought was very good until he said that the biggest problem with LS would be lack of sex (typical male perspective!) but up till that appointment I'd seen a woman called Dr Jane Sansom who is marvellous. Can you get yourself referred to Bristol? You're not that far away. She says it's a very common condition in her clinic. I wish there was a support group. I'm going to ask how to set one up  at my next visit.

    The main thing I took away from the male doctor (apart from a feeling of crossness) was to think of LS like Diabetes. You just have to find a regime that suits you, and then managing it should fit into your life, not dominate it.

    Lots of luck and strength to you.

    Bridge

    • lrebecca
      lrebecca Bridge_of_Sighs

      Posted

      Hi Bridge,

      Thanks so much for finding the time to write to me,your words and that of others really does mean a lot to me.

      Indeed it sounds like you have a lovely partner,there are some beautiful people out there...amongst the bad eggs. I am fortunate that the person I'm with is amazing in character and spirit and has a lot of love for me,he deals well with stuff...better than I do.We cope with the sexy stuff and there is no pressure from him,he just wants to help and feels helpless that he can't actually make things better for me. I think he helps me just by being there. smile I just hope this thing doesn't change me. Losing my independence (house wise,money-wise,etc) has really knocked my confidence and led to anxiety issues that have complicated things somewhat. But like you say,it will take time to comes to terms with this thing. You and others give me hope and I am thankful for that.

      The squeezy bottle from Sainsbury's,what size is it. Does it look like a plant mister...that sort of thing?

      The hospital I go to is very good,the Churchill in Oxford with a good dermatology department. I can't remember the lady who I saw. Going again in Feb. I don't think I can get to Bristol,a little far and I don't drive. My partner takes me to all my hospital appointments,so I am lucky in that way.

      I'm looking into changing my diet,but don't want to do too much at once.

      Many thanks and best wishes to you.

  • Bridge_of_Sighs
    Bridge_of_Sighs lrebecca

    Posted

    By the way, by Baking Soda do people mean Bicarbonate of Soda? there might be a US/UK translation issue here! Maybe I won't use my spritz bottle until I hear back.....
    • lrebecca
      lrebecca Bridge_of_Sighs

      Posted

      Ah yes,good point. I have just bought a tub of Bicarbonate of Soda.

      I will wait too...

    • hanny32508
      hanny32508

      Posted

      Add three pinches of bicarbonate to the bottle, then fill with warm water.  Use for rinsing after every bathroom visit.
    • hanny32508
      hanny32508

      Posted

      then cover the area with coconut oil
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