Close to giving up

[nh_user_41825]

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?

 

[nh_user_30384]

You've come to the right place for support and advice. I'm rushing off so can't give you the long reply just now that you need, but I'm sure someone else will pick up your thread.

I just wanted to reassure you that many of us are in relationships with understanding men and the quality of the relationship isn't measured by sex. Be kinder on yourself, maybe he wants to be in a relationship with you because he loves you, maybe that's more important to him than sweaty nights!

LS does mess with the way you feel about yourself, don't let it eat you up, you are worth more than that. Every single one of us is.

[nh_user_448369]

Hi , l am no expert but l do know for sure you need to get the stress in your life under control , l have a good idea how you feel l too lost a house and had loads of debt

. Take one day at a time or even one hour at a time and then you think to yourself well l got through that ok

Citizens advice bureau as a wealth of kmowledge to help you anf they dont judge

Look on the bright side your mums is better than the street or a hostel . You might not have a job but you have the skills to get one could you do agency nursing perphaps when your feeling better. My husband did agency work when he couldn,t get a job.Wow your lucky to have a nice boyfriend if he really likes you he will stick with you and hey if he dosen,t there , are more fish in the

sea you,ll be surprised. You dont say what as been prescribed for you , l use dermovate steroid cream which is good when you have a flare up many ladies om here use a baking soda soloution if you read their posts you will get the ratio,s water+ soda its inpprtant to get it right. This helps with the fusing a lot of ladies have had good results with this.Hope this as been some help to.you

You are not alone. :-)

H

[nh_user_46096]

Hi Luci R

What a rotten state you are in - i feel for you. Take heart tho - All is not lost First DO NOT feel guilty about living with your mother - she will be so pleased to have your company i am sure - You will, i hope, be  helping with the chores apart from anything else she will find that enormously helpful - and mothers are always mothers and normally will want to help their offspring in all the ways they can - IF you let them - AND dont take 'stuff' for granted - i am sure you aren't

Next clitoral fusion. Only the head is covered over; a minor procedure can undo this- however in the short term the nerves are still there, even if buried under the skin. So greater stimulation is needed - without friction - Get a vibrator- a small one not a great big dildo, you will find sensation is different but not lost, try it out for yourself to understand the feelings then let your boyfriend be involoved if you wish

As to work help lines are always delighted to have knowledgeable people to answer queries - you worked on a ward perhaps a charity can use your skills- and there are those who are able to use people who work from home - so no travel costs Charities will also pay expenses- your self esteem will leap up -IF YOU LET IT

Boyfriends  like the chap you describe wont run away unless you push them. Men cant cope with tears, emotional outbursts or constant misery. They want and need appreciation for the caring they give - they also like their stomachs filled - so if you can cook something yummy  to say thank you for being so understanding ...you could feel more in control of your life

I get the impression events have taken over and you are overwhelmed. Think of your problemes like a lump of cheese...nibble away at one issue at a time gradually you will find you have a cheese that is a manageble size.

Take a sheet of paper(or several ) and write down in short sentences each of the issues that concern you - a line for each Then mark each issue with a score - of how important it is to you (eg very100 / not very 20 / annoying 1/2 or whatever system works for you) Then write down in one sentence what stops you from dealing with that issue and score the diffulty And then what you can do to get the issue under control

You may not get everything sorted but you will have some control about all the issues and how you deal with them

Can you find someone to whom you can confide who doesnt judge- or comment but listens and aks questions? Perhaps just talking to the Samaritans can help. I know when things were too much for me and i didnt want to burden friends and family i found them wonderful - I didnt want to end it all - but just have someone to listen to my anxieties

Do try NOT to stress out as that is possibly one of the reasons we all have this damned condition - we absorb stress and dont deal with it properly - so do find a coping mechanism that works for you

Good luck and write to us again as soon as you like- we are all here to help each other. You May not get a lot of  people writing to you but there are a huge number out there who read and emphathise with you and wish you well  Take Care

Sue

[nh_user_41825]

Thank you Bridge of Sighs. I am hard on myself - I think we are all hard on ourselves.

I'm still getting used to the idea of having this thing,I guess- hope it will get easier.

Helps hugely to know there are understanding souls out there.

Grateful.

[nh_user_207772]

Sue, when I read your response to this lady it brought tears to my eyes, because I could tell how much you really care!!  

This is such a strong supportive group and your advice is amazing, as is the other replies also...I have to go out now but I will offer my "2 cents" later.

 

[nh_user_41825]

Many thanks winifred02134 for your response.

Funnily enough the local CAB have gotten used to seeing me in there and there is a very nice lady who is keen to help me with my debt management.

I am grateful every day and don't take anything for granted,every night I say a thanks for having a bed to sleep in. There is a saying that we are all be 6 months from the street. I see now how quickly things spiral out of control,lose job/house/reltionship breakdown/ill health and then nothing,scary. 

My health makes it impossible to work right now and I can't lift heavy things or do anything repetitive due to my neck injury. I am a qualified sports therapist so I can't do that now. I rehabilitated people that had had strokes and was not a nurse so cannot get agency work. I need to rethink what I am capable of now.

I have been prescribed both the Dermovate cream and the ointment and using it as directed.

I'm never sure if I need to put it all over or just on problem bits?

Definately will look into the baking soda method.

Got to try get some control back! 

Thanks for your time.

[nh_user_46096]

Thank you Guppy- I Do care - I felt so alone  and this site wasnt there for me when i was first diagnosed - while my money issues were very different i can relate to being homeless, life on hold, children having moved on  and no life partner any more - and perhaps no prospect of another one wither!!  AND Then LS...so whe i read of yet another sad soul i want to help...but then we all do! Take care Guppy - and i am still trying to get hold of the friend in B'bane to help re the campaign to get awareness out there Sue

[nh_user_41825]

Hi Sue,

Many thanks for taking the time to write this wonderful 'essay'

What great advice,I'm not sure where to start!

My boyfriend suggested talking to the Samaritans but something always stops me,I've no idea what it is,maybe the admission of everything? I've had to be strong all of my life and especially bringing up my two children alone,but now they are no longer under my wing-I somehow finally feel weak.

I'm not good at dealing with stress,my heart sets off my gastritis that sets off the LS and round again!! 

Very good advice you give for nibbling off bits when it all seems so overwhelming and the writing down stuff is a good idea too.

My daughter told me the other day that she thought I was the bravest person she knew and to remember that we never see ourselves as others see us.

I'm good at listening to people and giving out advice. Why is it so hard to apply it to myself?!

My origianl post seems a bit dramatic and I'm fairly embarrassed by it but so glad you guys are here to notice.

Thank you Kindly

[anon87974465]

Such a run of bad luck, and that is what it is no reflection on you or your abilities.

LS wise, I am not in a relationship and feel I never will be again, sex to me is not the main part of a relation. How do I begin to have a relationship when I am not right down there.

4 weeks ago I had an operation to correct a repair and solve a rectum prolapse. This only come about after I have over the years had hysterectomy, bladder operations x3 and now this, I was not fortunate to have children which after 7 years of me nagging that something was wrong it was confirmed I had endometrites.. I have over the years had what I thought was thrush which just would not go away. This last episode with 4 visits to the doctor and my body deformed a locum doctor submitted me to the hospital and am now receiving treatment. My cliterous has also fused over, and my uretha had to be stretched during my last op. 

I am am compiling a list of questions to ask on my next visit to hospital, and this site is excellent.

 

[nh_user_46096]

Don't feel in the least embarrassed - we have all been there. When we are down it seems an awful long way up - but with effort  you can pick yourself up and get back to being in a Good Place

Don't worry about talking to the Samaritans - they have NO Idea who you are but can and do listen - just getting your fears out there helps - as does writing it down

i also found that writing out my worst fears then popping on to the fire is satisfying too

Your daughter sounds a sensible lass- she must have learned it from a caring mother

Now consider your self a project that needs sorting and you will succeed

You sound much better already

Best  wishes Sue

[nh_user_538155]

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

[nh_user_41257]

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.    

[nh_user_41825]

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.

[nh_user_41825]

I am so sorry to hear you have had all this to deal with,my gosh I feel rather pathetic now. I know all of our problems are relative to ourselves but you have had a rough time.

I hope you are recovering and I wish you well.

Best wishes

[nh_user_41825]

Thank you Sue x

[anon87974465]

No no I did not mean you to feel like that, I am lucky in other ways. I just wanted you to know you are not alone. I am getting so useful tips on here. I have been told not to have baths, but will be asking about this next time I go. 

Can I ask what part of the world you are from, when I joined I did not think, I am from England, did not know if they advised different things in different countries. Hope you get some help and support soon

[nh_user_207772]

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.

 

[nh_user_41257]

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!

[nh_user_355142]

Hi Eileen,  I am from Hertfordshire in UK.  When I read your story, it was very similar to my own.  Hysterectomy (when I was in my early thirties, due to a prolapse), rectal prolapse and bladder problems ever since.  This site has been an incredible help to me and recently I changed over from a barrier cream, recommended by my dermatologist, to coconut oil and there has been a definite improvement.  I am not saying that I am cured, but my LS is bearable to live with now.  I am not flexible enough to inspect things down there, so have to rely on my dermatologist to do this.  Are you anywhere near Herts?  Take care all of you!