Close to giving up

Posted , 14 users are following.

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

Prev Next
  • Posted

    Got my bicarb ready... got loads, I use it in house cleaning (which I do as little of as I can get away with!)

    The spritz bottle is really small, handbag size. I got it in the cosmetics section, where they sell travel bottles for flying. I did have to ask though. If it works for me I'll source one with a lid that I can have with me all the time.

    Lack of confidence, yeah, I'm a stay at home parent and struggle with that too. Something about justifying a salary does that to you. But remember that it's only the way society has been constructed, and it would collapse without all the unmeasurable inputs of people like us who go under the radar. You are there for your mum and partner as much as they are there for you. You've brought up children who are out there doing good things and being good people - that's worth at least as much, if not more than a stockbroker making already rich people richer, or a banker sweeping up his undeserved bonus.

    Just thought that stockbrokers and bankers may be on this website too! Illness is a great leveller... Don't mean to offend anyone.

    • Posted

      In my day - being a child of the sixties - the norm was for mothers to stay at home and 'educate' the children until they went to school and Be There for them on their return. It is only the need to service the mortgages, that have become out of hand, that the push for mothers to go out to paid work is made - especially by the polititcians.

      I thought a privilege to be with my children and loved every minute of doing so.

      Sadly material expectations have been raised that you have have what you want, when you want it and the price paid, is  working mothers apart from anything else, like feeling low because you are NOT working for payment.

      Certainly after a period of not being in paid employment the confidence levels can be sapped - but they will soon return once returning to work. By volunteering in some way can help boost the confidence a great deal- and one's feelings of self worth - if that is a problem too.

      Being a mother is THE most important role - talking to the children being consistant and giving boundaries where necessary stretching their abilities praising then - but NOT TOO MUCH -an unrealistic belief in themselves is just as bad and they head for disappointment later in life 

      Not parking them in front of the TV while chatting on social media - sadly all too obvious these days.

      SO you stay at homes involved mothers  - Good on you!

      Sadly working mothers can feel guilty and over compensate - and often envy those who do stay at home

      a diffcult situation for  the young these days

       

  • Posted

    Bicarbonate of soda ?? Ooops been using Baking powder.....no wonder it's not working my bits down there are fusing up fast.  I too am losing sensation in my clitoris ! Very dissapointing as seems its the only pleasure left in life that is healthly and free ! Was only diasnosed in November and don't have an appointment with a vulva dermatolist unitl 11th March.  Everytime I put dermovate on I feel changes and can feel a fizzing sensations sometimes so I know things are happening. Also I have been using petrolium jelly as apposed to coconut oil.  Does it work the same or do I need to change? Good luck with the future. Are you from the UK ? I would love to meet some fellow sufferers from the UK to meet up and share experiencses.
    • Posted

      Baking powder has an acid in it too, so that when water is added it fizzes- and makes the cakes rise! Bicarb is alkaline which appears to help reduce the symptoms of burning

      Use a vibrator on the clitoris

      Look at the undercarriage and note what is happening when you feel The Fizz!

      Petroleum Jelly  - Veseline is a good inert barrier Coconut oil is said to have antiseptic properties and be soothing as well as moisturising

      Where are you in the UK? I have noted there are "LS ers" in Oxfordshire Hertfordshire near Bristol Worcestershire and Essex. you could perhaps privately message  some one near you - check out the various threads

       

    • Posted

      Another thought - when you go to your GP or nurse ask if they would approach anyone on their list with the condition and give them  your contact details so locals could contact you.... Or ask if you could put up a poster inthe surgery with your details - preferably your mobile - more anonymous that way and ask for the details to be left on your answer phone - or get another email address - easy enough with hotmail or gmail and use that- so again your privacy is retained
    • Posted

      Big difference Janet - bicarbonate of soda versus baking powder.  Try to become diligent with the bicarbonate.  Especially when you're fusing up fast.  Also use coconut oil to cover afterwards.  In my opinion it is the combination that makes the difference.  And don't forget to watch your diet either:  no gluten, no dairy, no sugar, no alcohol, no caffeine.  These are the big ones.  Makes your system alkaline and less accidic. And that, in my experience, has made a big difference.  
    • Posted

      I'm from Essex in the UK. I too was diagnosed recently and after having a biopsy last month I'm waiting to go and see my gynea again on 2nd March. I am concerned at how fast the skin has fused since December. GKing out of my mind with worry :'(
    • Posted

      Remember Jackie that stress or anxiety is our enemy and fusion's friend! Do try and relax. Use your clobetasol as described by Dr G. Learn to increase your endorphins ...smile laugh relax exercise.

      then phone up the consultants secretary usually available on the day of your clinic and ask for the appointment to be brought forward, and ask to have a word with your consultant..you may need an appointment for this to happen and some don't or won't talk on the phone but no harm in asking

      Keep your pecker up and think of something nice and then of something funny Good luck 

    • Posted

      Hi and yes I'm in Oxfordshire. I too was diagnosed about the same time as you and seem to have the same things happening down there! 

      I have to stop myself crying every time I look as a bit more seems to have fused...and it's happening daily it seems - an alarming rate! I did not know this was possible.

      I use the steroid ointment daily and organic coconut oil.I sometimes feel a fizzy sensation,almost hot stingy but not quite,hard to explain.

      My next appointment is last week of Feb.

    • Posted

      I am busy looking through recipes and going to start an elimination diet a week today. I don't eat a lot as it is because of my gastriitis. I think it's going to be hard but I am willing to try and may end up being a double bonus in helping my tummy too! 
    • Posted

      Jackie...my thoughts exactly.

      I am shocked that over a period of 4 weeks over Christmas,the skin has 'grown' over my clitoris and I've lost a fair bit of sensation...all so quickly! Even in the last week it has progressed more. I am using the ointment daily and doing all I can. Starting the sugar,gluten,dairy and alkaline elimination diet in a week to try and help this thing stop advancing!

    • Posted

      Waiting until the end of Feb is not great bearing in mind your situation..can you not ring up and explain to the receiptionist your situation, they might fit you in sooner...also I think maybe you should use the cream twice a day  until you get to see a doc...bearing in mind how rapidly it is progressing, I feel bad for you!.
    • Posted

      I would like to encourage you to start using baking soda rinses after every bathroom visit (three pinches of baking soda in warm water spray bottle) and start taking baking soda baths (1/3 of a cup)   It somehow affects the fusing in a positive way.  

      Next - start looking into an alkaline diet:  no gluten, no dairy, no sugar, no caffeine.  It seems to make a difference with me. 

    • Posted

      Yes, I feel that my whole body benefits from doing my alkaline diet.
    • Posted

      I wasn't sure that I could do that but yes it is worth a try...they can only say no. 

      I had thought about usining the cream twice a day,morning and before bed. I have always wondered...do I put the cream just where I think it should be or all over the area?

    • Posted

      By baking soda ...you do mean bicarbonate of soda don't you...hope so! 

      I had my first bath with it today,I did notice it made the skin on the rest of my body feel irritated,but I guess I can avoid that by just sitting and not wetting upper body when using the bicarb. 

      I am already caffeine and dairy free....for years. So have to address sugar and gluten and go alkaline too. 

    • Posted

      Bicarbonate soda, yes.  It can irritate the skin, but then just don't make it too long.  As soon as I feel the skin, bath time is over.  
    • Posted

      Its probably best if I tell you how I apply my cream..when I was first diagnosed the very inside of my labia minora was all white, and so I applied the Clob to both sides, a small amount, the size of a small pea to that area.  Once that had cleared up I felt better and stopped applying cream there as it is a particularly sensitive area after all (inside)  and I have had no problems since and I do not apply cream there now as all seems well.  

      Then I noticed I had a small amount of fusion, on the outside of my vagina, the top right hand side of my labia minora had fused a little bit into my labia majora, there was no white areas, nothing to indicate anything was wrong!! it had simply decided to fuse, and so from then on I decided that I would have to watch this area carefully as this was clearly the area were serious fusing would occur,  and I now apply cream twice a week between my LM and my LM, I make sure its well rubbed in and leave it a while before applying any lubrication.   When I look in the mirror what I see is that my Labia minora doesn't look the same from both sides, the right hand side is about half an inch shorter than the left hand side.

      My clitoris has been giving me some trouble lately, and that's an area I am unsure of,  I have felt a slight soreness, pain in that area, and so I now know I need to keep an eye on that and I do put cream on, but I use half a pea size this time, and I gently rub it in and try to get under the hood if I can....after about an hour I then apply coconut oil, or lube, whatever is handy. All of the above will work better if you can at least sit in a bath with bic soda for a while, it softens everything and I believe this helps the cream to be absorbed better.  

      I have been very explicit here as I have a feeling that some woman probably aren't applying the cream in the right area.

      I think you should have a word with your specialist and get them to show you exactly were you need to apply it, because if you are not applying it in the correct areas fusion can occur.

      I think any areas that appear "wrong"  need to be treated with Clob, but I think where the confusion and problems arise is that sometimes nothing appears "wrong" and fusion occurs, but I think I am right in saying that this fusion that occurs is nearly ALWAYS in the area that I have described above, I think I am right in that....and so I think that is one area that you need to always put your clob.

      If I am wrong about the main area that is vunlerable to fusion, I am sure someone will say.

       

    • Posted

      Hi thank you for your reply I appreciate knowing where to apply and how frequent as a novice LS sufferer. I scoffed at the bicarbonate of soda rinses and baths at the start of my diagnosis but tried it and a week on I have some melting of the fusions I have experienced. I now need to rescue my joy .... the clitoris! Any tips ? I am experimenting. ... I have mixed bicarbonate of soda with petroleum jelly and applied ! Watch this space
    • Posted

      Janet, its important the bic soda is well diluted, dont apply it with petroleum jelly as it will be too strong...I made a similar mistake and paid the price, it needs to be well diluted.
    • Posted

      And in addition to Guppy's response, I would like to say - give it time!  Gently nurse yourself back.  Bicarbonate rinsing after every bathroom visit is important, then apply coconut oil.(coconut oil has some anti bacterial, anti fungal qualities)  This combination does well.  Leave the petroleum jelly out of the equation.  The bicarbonate changes the ph level.  That's what makes the difference.   Add to that the alkaline diet (no gluten, no diary, no sugar, no alcohol, no caffeine, carefull with soya) and you are well on your way to control LS.  (It took me from October to January to feel something of a clitoris) (but it's there)  Some left over fusing to go.  
    • Posted

      Sorry had a bad few days and been off the radar.

      Thank you so much for your application advice,it really helps.

      I am noticing that every time I apply the Clob my vagina starts to produce a discharge...almost instantly and so much that I need to wear a cotton panty liner which seems to make it produce more!  Arghhh! What is all that about?!  It makes me feel like I have thrush when I know it isn't. 

    • Posted

      Hi, no worries, just to reiterate, the Clob should never be used inside the vagina, as mentioned above, I used it briefly for ONLY a week, as the inside of my labia minora was pure white on both sides, and so once it cleared up I never used it there again as it is very strong cream and is supposed to be used only on the outside of the vagina, and so if you are only using it on the outside I have no idea why you would be getting discharge, is it possible that you have something else going on at the same time? I think I would want to go back to the docs and see what she has to say,  it is possible this is not the right cream for you, everyone reacts differently.

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.