Unfusing

Thanks so much Joanne, sorry it's taken me a long time---- computer probs!

Hi Deb, it's not very helpful when the professionals fail to give support and advice so thank heavens for this forum. I too have fusing but was only told what it was when I totally broke down and told the Dermatology nurse that I was unable to have penetrative sex. She had already examined me but said nothing.

Anyway if you read the thread an experiment with Borax, its very encouraging. Although a novice in terms of available treatment, I know that my condition would not have reached such a severe stage if I had had earlier intervention. My advice would be act now. Read as much as you can and get on with it. The very best of luck.

Also, if only people would talk about it! I had years of being fobbed off by doctors as a hypochondriac until I moved house and my new doctor knew at once what it was. That was 7 years ago. It took me 5 years to be able to tell a friend about it, and I only told her because she came round when I was at a low point. When she started to itch she knew at once to go to the doctor, and her doc knew what it was too. Now I've told a few selected friends and told them to spread the word. Early intervention is so important. But I know it's difficult to talk about. Those of us with daughters need to make sure they know the signs too.

Thanks, I agree about speaking out and telling our daughters. I have four daughters, a daughter in law and eight granddaughters.  I have made sure they know about the symptons, this site and the Borax and Baking Soda!   I have only told a few very close girl friends, I have been unsure of how to start the discussion, haven't quite got the knack of bring up the topic ...  But I KNOW I have to, I do not wish them to suffer like I did or think they are hypochrondiacs. 

OK, as I am writing I am thinking of this as a challenge to myself, and for  the benefit of others.  I am going to speak with my woman friends and tell them what I have been going through and how I found hope and healing!   

Thank you for writing what you did, we really do need to "spread the word"!  God bless  

You are so right. I have found it all very difficult to discuss and still do. I have told my mum and daughter but no one else at the moment. I am going to make an effort to tell friends. I had the condition for years without seeking help despite being a health professional myself.

I had a phase where I went into every pharmacy I passed and, if there was a female pharmacist, told them about LS. The older ones universally said 'Oh I know all about it,' and were very defensive, the younger ones tended to be shocked and didn't know. A few said they'd go away and look at it. My reasoning was that if someone was buying lots of candida relief, or obviously needing help with sex, then it might be a conversation they could start. So think about spreading the word that way too. They all have private cubicles where you can have that conversation.

Also I was at the doctors for something else, and when the male doctor was out of the room I asked the student doctor if she'd heard of it. She hadn't, so I gave her a two minute introduction. She looked horrified, so hopefully she'll be one who comes through the system informed.

It took me a long time to stop hiding though, and I do understand the embarrassment. I started to get angry about all the badly diagnosed stories I was coming across, and that helped me overcome any awkwardness. Friends were much harder to tell than strangers, I've only told a few of them and asked them to spread the word anonymously.

For a while I too 'spread the word'.  But at present I'm unusually quiet.  No explanation  as to why.

Hello, You sound as though you had the same experience as me.   However, it's possible to have the fusing fixed!   I have just had surgery (March 2017).   I have had LS since 2009 (or maybe before?) and been unable to have sex with my husband since then.    Around 2009 I developed severe pain, itching, burning.... I thought I had an infection or thrush.  It was 2011 before LS was diagnosed (after several medical appointments and a bioposy).    I was then told that 'you don't need surgery, that's for extreme cases'.     I was given dilators which I found difficult to use and got very distressed.   This to and fro between doctors/consultants went on for some time.  Without going into every detail eventually in November 2015 I went back to my GP (again) and said that I wanted surgery.  She referred me to another consultant and I saw him in January 2016.   He then referred me to a plastic surgeon who specialises in reconstruction of the vaginal area (sounds more dramatic than it is - don't worry).    I saw him a few months later (yes, months).   He was great and said he would like to see me with a gynaecologist in the same hospitial.  Both of them together met me (October, December 2016 and January 2017).  In March 2017 I underwent a relatively simple operation (on the NHS in the UK).   I went home a few hours after surgery.  I had some stitches down below - it wasn't that painful, just a little discomfort.   At the time of the procedure they did a smear as I had been unable to have one.    Since the operation I have seen the gynaecologist twice and am due back again in a couple of weeks.   I am now using all of the dilators (yes, even the biggest one).  I've not yet had intercourse but have come back from this.  You can too!   I have been told that I need to manage the situation and not allow the LS to fuse my skin together again. It's a second chance.   If you would like further inforamation let me know.  Good luck, Ashley Jo

Hi, where shouts in UK did you have the procedure? Thanks for detailing your story 😀

Hi Samantha,

I live near Glasgow in Scotland - the consultants are both based and work out of two of the Glasgow hospitals.   I had the procedure completed in Glasgow.   Hope this helps you,  best wishes, Ashley Jo

Thanks Ashley Jo! Good to know.

Hello Ashley and thank you for the information. Like you I had LS for several years before diagnosis

and even since commencing steroid treatment never really understood why it was all so painful and

difficult. I was given the dilators about 3 months ago and have seen some improvement.

I have been able to progress to the next size which is still one down from the largest and very painful.

I have had some skin tears which thankfully have healed without re fusing. I have also been using Bicarb

for over a month but with no obvious benefits. At the moment I am

sick to death of messing about with my bits. I always seem to be creaming, cleaning, treating or just checking.

I have a bright torch and a magnifying mirror and I want to lob them out the bathroom window and never look again.

I'm sure we all feel this way at times and I am having a bad week so please accept my apologies. It is very difficult

when your relationship is affected even if your partner is supportive. There is still a loss and it leaves you feeling vulnerable

and afraid.

Can I ask Ashley, what is the condition of the skin around your vagina? I have thought about surgery (if possible) but the skin

appears to have no elasticity and am concerned that nothing will fully rectify the situation.

I'm really pleased for you and hope that things continue to improve.

Take care.

Hi Wero,

Hope you are feeling better and apologies for the delay in replying.   You sound very similar to me in terms of your experience.   Prior to surgery I was unable to use the three biggest dilators of the five I have.   No matter what I did I couldn't use them.   Also, I have always had smear tests done every three years - but by last summer I was unable to have my smear done.   In answer to your question about the skin around my vagina I would say it is better now than it has been since 2009.   I think this is because the gynaecologist who perfomed surgery in March gave me useful advice and products from October/December 2016.   I know it might sound very simple but it has certainly helped me - she gave me Epaderm ointment and told me to apply it every day and after each time I pass urine.   This helps keep the area moist, it helps reduce itching and dryness.    It also helps prevent skin fusing together.    She also advised bathing in baths with a few drops of lavender oil added.   She is also the first doctor/gynaecologist to give me a repeat prescription for a shower gel specifically for skin conditions - and told me to use nothing other than this - it's called Derm 200 oil emolient.   I started using all of these a few months before surgery.   In addition, when I felt 'itchy'/a flare up then I use a steroid cream immediately.    Approximately one month after surgery (after I saw the gynaecologist twice and she checked my progress) she told me I could start using the dilators again - and that I should be able to use all of them.   I have to use them twice a day every day.    The gynaecologist all gave me Lidocaine ointment to use with the dilators if necessary - it is an anaesthetic product and produces a degree of numbness to relieve pain.   I have to say I have not used this ointment with the dilators apart from the largest one - but it's good to have it.

From what you say I think you could improve the condition of your skin by using the products I mention above.  Remember I only started using these quite recently (about 3 months before surgery).   One other thing I should mention (but I guess this depends on your age) - I am also now using Vaginem (HRT).    I never bothered about this before but it does help.

You sound as if you have tried many different methods/procedures and are feeling frustrated.  That is how I felt.   The surgery doesn't 'cure' the LS but it helps you get back to where you were - which means you can manage it and have a 'functional' vagina.   I feel it has been worth it.   I know that I will need to continue to use these products - but at least I have a chance of resuming a normal sex life, which is very important to me

Please don't be afraid to seek advice about surgery, I think you find it would help.   What I have found and the gynaecologist confirmed is that internally my vagina was/is 'normal' but the opening had narrowed and this is why I could not have intercourse. 

In my experience surgery is definitely worth having.

Thanks for your good wishes, good luck and take care

Ashley Jo

Thank you Ashley, we certainly have had similar experiences and reading your reply

has actually made me feel a lot more possitive as I feel I am on a similar track. I was initially

prescribed Oilatum which made me worse but was then given Dermol. I did some research

and found it comes in so many forms. I now buy the shower cream, bath cream and the lotion.

I was prescribed white soft parafin as at the time I had some pretty bad splits and open areas

and this fills the wounds and really helps with pain and passing urine. I don't use much though

as it is very greasy, I have been using coconut oil but the effects don't seem to last long so I am

going to see if I can get some Epaderm. I am 58yrs and fortunately was put on HRT following a

hysterectomy in 2007, so do not have any internal dryness.

Like you I was given Lidocaine along with the dilators but don't really use it as I get an odd

sensation when it enters the vagina which I can't avoid. I have 4 different size dilators and can fully use

the 2nd one. I have tried the 3rd but it is too painful and I feel that I have reached the maximum. I was

actually told by my Dermatology nurse to push until the fusing splits open. Then to apply Betnovate to

stop it re fusing. She went on to say that it was all they do in surgery anyway, just rip it apart again.

I was horrified and find it quite barbaric. I would never be able to consciously split the skin it's too painful as

I found out when it happened during intercourse prior to obtaining the dilators.

I have not been seen again by my Dermatology nurse since being issued with them. My appointment as

usual getting postponed. It will be 6 months as opposed to the original 3.

I have an appointment next month so I will see what she says then. Thank you again your determination

and progress has made me feel very possitive again. ?