Upset ,scared please help I think my urethra is fusing now

Hello Alison,

I'm exactly the same! I'm 54 and was diagnosed when I was 40. Had no real problems and used the clob whenever I needed to. I had a hysterectomy when I was 52 due to fibroids, but it is now in the last six months LS has gone into overdrive. I am fusing too, no inner labia, in constant discomfort and worried about my urethra. I have back ache and hardly pee. I'm worried I'm in urine retention but then i would feel as if i needed to go! Its a constant worry. I did go to the GP and she asked me what I wanted to do! Great help she was and she gave me Canesten cream!!!! I'm thinking about trying HRT. I do believe there is a connection with LS and the menopause!! You're not alone x

I'm 59. Was diagnosed a yea ago. I'm having labia fusing as well and am concerned about urethra fusing. Are you putting the clob in the urethra area? My dermatologist told me to do that. What do they do about that? Is there a surgical option?

My gp diagnosed me but I was at that stage really sore and itchy that's all stopped just occasional itch I used clob ,but must admit when it had been fine I never used it.i went through menopause in mid 30s I also have a vaginal oestrogen pessary twice a week .

It seems over in the UK there is very little done but it such a lonely disease I have no one to talk to and fear ever needing an operation as what do I tell people .I am at the end of my teather and petrified.

I'm finding the same, my anatomy down below is changing and I feel worried about it. I've got what I think is scar tissue which is becoming an issue, sore and abrasive. I feel 'weird' and different and it's causing issues between my husband and I. It's not the sort of thing you'd discuss with your friends is it. So isolating ☹️

Dear Allison - Oh my gosh dear, I feel for you! We've all been in that scared moment in time. I have a wonky peeing but no sense of incomplete release. I went looking online for you and found the NIH PubMed article below. The upshot is as usual... they don't know, or it's controversial etc.

The one take-away that I have been getting on all my literature search of the last 15 months always comes back to the word, INFLAMMATION. If scientists aren't sure that this or that illness is an autoimmune condition, they usually always remark that such and such is an INFLAMMATORY situation.

I believe at least half of the nutritional supplements that I have found are part of an autoimmune protocol have verified use as an anti-inflammatory. Have you been taking all or most of the supplements that I put together as a Nutritional protocol for autoimmune conditions? These might really help. See this link:

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

I'd also like to report to all of you... that I have been taking the LDN now for 2 weeks, and I just noticed yesterday - haha- consciously that I didn't hurt anywhere down there. not in the least. Who knows, but I'm not waiting 10 years for some study to "prove" the uses of LDN to double -blind satisfaction.... so here is another avenue for you to check out as well, Allison:

https://patient.info/forums/discuss/ldn-for-lichen-sclerosus-experience-690359?page=0&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3452347

Curr Urol Rep. 2008 Sep;9(5):419-23.

Female urethral stricture disease.

Keegan KA, Nanigian DK, Stone AR.

Abstract

Female urethral stricture disease is a rare entity. The most common etiologies are traumatic injury, iatrogenic injury, and inflammatory disease resulting in periurethral fibrosis. Hallmark symptoms are frequency and urgency, and may also be dysuria, hesitancy, slow stream, incontinence, and recurrent urinary tract infections. Female bladder outlet obstruction is a difficult entity to define, and the subset representing stricture disease may also be elusive. The diagnosis of female urethral stricture disease is usually based on symptoms, meatal appearance, and difficult instrumentation of the patient. Other testing, such as urodynamics, voiding urography, or cystoscopy, may be helpful. Treatment options are conservative management with dilatation, endoscopic treatment, or open repair with various tissue flaps or grafts. Considerable controversy surrounds the efficacy of urethral dilatation in women with voiding dysfunction.

Dear all, I am a male and have been dealing with several Autoimmune related conditions, including LS for the best part of 10 years. First of all I fully endorse everything Nancy KB states as I have found that Nancy has the most in-depth knowledge and practical solutions in dealing with LS and the other Lichen based disorders.

However, I have been dealing with NHS GP's all of my adult life and find that while some are genuinely helpful, others will only give you access to the expertise -and therefore, the actual treatment regime you require, if you are sufficiently assertive or insistent enough.

Essentially, no Woman in the UK should be made to feel isolated and alone from the treatment they require from the NHS - and they should certainly not be made to feel this way about the condition they are suffering from, or otherwise made to feel inadequate in front of their own GP.

So, what can we do about this with regard to LS and the NHS? Any one suffering from a condition as severe as LS has the right to see a Specialist - and certainly the Women who have posted on here to-date are suffering from major issues regarding the impact of their LS and should already have been given access to an NHS Specialist who has in-depth knowledge in combating these kinds of conditions.

When given access to a Specialist the relationship between patient and specialist should be one where the specialist is fully prepared to listen to what the patient suggest would be best for them, rather than directing the patient down one narrowly defined treatment or treatments. This is particularly the case because through trial and error we, ourselves, find the things that are most helpful to our skin type and for the individual severity of the condition we are experiencing.

So what kind of NHS Specialists am I talking about? The most relevant ones are those dealing with conditions such as LS on a regular basis, so this would be the likes of of a Vulval Disorders Specialist or a Dermatologist Specialising in Genital Skin Disorders. Until recently there was a detailed NHS Website (NHS Choices) where you could search for these specialists - unfortunately in the infinite wisdom associated with the NHS, this has been done away with.

However, you can still do a general search for NHS Specialist Departments and this will give you details of Specialists in your own area. NHS Departments dealing with LS in Women can vary between Gynaecology or Dermatology - the greatest relevance of knowing that a Specialist NHS Service exists in your own area that deals with LS is that you can then go to your GP and state (politely) that you would like a referral as soon as possible. I have just done brief searches using the terms "NHS" and "Vulval Skin Disorders" and this has given me a listing of different NHS Specialist Department across the UK.

Certainly with an issue where the Urethra is closing due to the fusing action of LS, any NHS GP should be able to refer a patient for what I believe is a very minor surgical procedure (? this may be specific to males ?) - but again, any department specialising in the treatment of LS would advise on the best course of action for Women with LS to take.

Just an essential to close with: if you try to gain access to an NHS Specialist in Lichen based disorders and you find your GP is not being helpful, or you cannot find a Specialist in your area - I will do a search for you. Simply update this Forum Posting - I would request that you do not Personal Message me as I would like to make all readers aware of where NHS specialist services exist in specific regions of the UK. Simply state where you would prefer your Specialist referral to take place in terms of UK region or large City .....