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Dryness in intimate area.

Annalouk profile image
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Hi, this post is a bit sensitive but I was wondering if anyone else has problems with vaginal dryness especially in the outer lips. It gets so bad it feels uncomfortable just to sit down. My clothes stick to me.what does anyone use to treat this?

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Annalouk profile image
Annalouk
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Barnclown profile image
BarnclownLUPUS SUPPORTVolunteer

it's a complicated subject and perhaps what I'm about to suggest doesn't apply to your case at all, but my experience of this sort of thing leads me to think that probably you could do well to discuss the following possibilities with your drs, if you haven't already. Even if your dryness isn't due to either of these 2 conditions, you can help yourself via lifestyle management techniques using the OTC & prescription products described as treatments below:

Sjogrens: this autoimmune condition often overlaps with SLE and definitely has affected my vulva (and vagina) the way you describe. My version of this began in perimenopause during the 1990s. Apparently the treatment for sjogrens is v similar to that for sle + lifestyle management (OTC products that can help reduce this dryness include Replens and Yes lubricants, and daily doses of omegas & vit D + keeping well hydrated, and most crucially avoiding bathing down there with any sort of soaps + avoiding tight fitting clothing especially synthetics & avoiding any type of pantybpad or toilet paper that can irritate your sensitive vulva tissues). Some can use prescription HRT pessaries & aqueous creams etc to reduce this dryness, but I reacted to these with rashes all over my bod...my drs say my reactions are due to lupus sensitivities + to the carriers in these products

Lichen Sclerosus: this autoimmune condition doesn't seem to overlap with lupus that often, but it does in my case (eg when I had to stop daily hydroxy recently due to hypogammaglobulinaemia, my LS flared). I was diagnosed shortly after menopause @49. The treatment I'm on for LS includes strong prescrip topical steroids (dermovate) + a regime of daily bathing with prescription emulsants (I get Emulsiderm on prescription) + products like replens MD which I also have on prescription + great care choosing lubricants. As with sjogrens, no soaps down there etc etc

I'm 61, have infant onset Sle + various overlapping conditions including the above conditions & Ehlers Danlos type hypermobility. My GYN issues are complex because I was exposed to the artificial oestrogen DES inutero daily for months. So my version of the dryness you describe is complicated. But my lupus went without daily systemic prescription treatment most of my adult life, until 4 years ago. During those pre lupus treatment years, my gyn dryness (mainly due to unrecognised sjogrens) & LS were diagnosed and responded well once my drs & I figured out which treatment suited me. I've now had almost 10 years of feeling much less trouble from this sort of dryness, but I comply conscientiously with all my treatment regimes & lifestyle management routines

sorry for going on at such length & in so much detail, but this subject is close to my heart. Apologies if you know all this already...but perhaps others will read this thread and find something helpful in my reply. I felt v lonely, frightened and confused when I was in the early years of coping with this. If there is anything I can do to empower others, I'll do it...including long posts like this on such an intimate subject

Take care

lupus-support1 profile image
lupus-support1Administrator in reply to Barnclown

A very helpful and informative post. Thank you for posting.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Whathappned profile image
Whathappned

Hi

I have just read Barncloud's post. It's very informative and I would like to advise you to get a Gp ( experienced one) examination too.

I also have lichen sclerosis at 46. My mum had it over the past 40 years on and off but being of that age group never really asked what it was. I only know now because she talks about the fact she was given cream years ago that got rid of it, or so she thought.

Mum hasn't got any autoimmune disease but has RA siblings. I have 'something' and must admit since I started meds the lichen sclerosis symptoms have improved lots.

It's very rare but untreated this can cause changes in the tissue. My mum has had operations in her 80's to treat this and it could of been kept under control with more understanding on her part, use of creams and getting checked more often. She is now seeing a gynae consultant every 3 months and doing well but earlier treatment could have saved all her ops and worries.

Get checked it could just be lack of lubricating cells due to this disease (or age, and hormones (I'm not sure how old you are) but best to get checked. As I say get an experienced Gp if possible. I initially saw a registrar who wasn't sure and referred me to her senior.

lupus-support1 profile image
lupus-support1Administrator

Here are 2 Articles from the NHS (National Health Service) in the UK:

Lichen sclerosus

Introduction

Lichen sclerosus is a long-term skin disorder that most commonly affects the skin around the genitals. The skin develops severely itchy or sore white spots.

Itchy spots can sometimes also develop on the skin around the anus (bottom). Non-itchy white patches can sometimes develop on the upper arms, back, breasts and shoulders.

Lichen sclerosus is an uncommon disease that can affect men or women, but most often affects women aged over 50. The cause is unknown but it is not contagious.

It usually lasts for years and can be very distressing. There is no cure, but symptoms can be controlled with steroid creams, which may also prevent the condition getting worse.

Occasionally, the condition clears on its own without treatment, and doesn't come back.

Lichen sclerosus in women

Lichen sclerosus affects about 1 in 1,000 women, although this may be an underestimate as mild cases may go unreported. Some women may mistake the symptoms for those of vaginal thrush, meaning they are not diagnosed immediately.

Symptoms in women

Women with lichen sclerosus usually develop small white spots on their vulva (the skin outside the entrance to the vagina). These are usually itchy or sore. This itchiness tends to be worse at night and may disturb sleep.

There may also be itchy spots on the skin around the anus.

Over time, the spots can become larger and join together to form large white plaques.

The skin of the vulva or anus may eventually turn white and become fragile, thin and wrinkly or thickened. Some patches of skin may become inflamed and raw, and may eventually split or crack. Sore or cracked vulval skin is more prone to a vaginal thrush infection. Sex can be very painful and, if the anus is affected, it may be painful to pass stools.

Without treatment, the skin of the vulva or anus may scar and shrink over the following months or years. This can make the entrance to the vagina narrower, which makes sex even more difficult.

Steroid cream

Steroid ointment or cream is the main treatment for lichen sclerosus. It helps to reduce the inflammation and keep symptoms under control.

It should be applied regularly but sparingly to the affected areas. Your doctor will advise you on how much to use, how frequently and for how long. Generally, a 30g tube should last two to three months.

Symptoms tend to ease after two weeks, but it may take three months before the area feels normal and symptoms are fully under control.

After three months of using the cream, you may only need to use it once or twice every few weeks to prevent symptoms returning.

Lifestyle advice

Women may find the following advice helpful:

avoid washing with soap or bubble bath – use plain warm water or a soap substitute instead, such as aqueous cream

avoid perfumed bubble baths and biological washing powder

don't rub or scratch the area

try using an emollient, such as petroleum jelly, before and after urinating

wear stockings instead of tights

if sex is painful, try using lubricant

a vaginal dilator may help if your vaginal opening has become smaller (if this doesn't work, you may need to consider surgery to widen the entrance to the vagina – speak to your doctor about this)

Lichen sclerosus in men and boys

In men and boys, white spots develop on the foreskin and end of the penis. These may be itchy or sore. The skin on the tip of the penis becomes firm and white.

Eventually, it may become hard to pull the foreskin back and it may be difficult to urinate.

Steroid cream

Steroid ointment or cream is the main treatment for lichen sclerosus. It helps to reduce the inflammation and keep symptoms under control.

It should be applied regularly but sparingly to the affected area of the penis. Your doctor will advise you on how much to use, how frequently and for how long. Generally, a 30g tube should last two to three months.

Symptoms tend to ease after two weeks, but it may take three months before the area feels normal and symptoms are fully under control.

After three months of using the cream, you may only need to use it once or twice every few weeks to prevent symptoms returning.

Circumcision

Men or boys may need a circumcision if their foreskin has become severely damaged. Circumcision is an operation to have the foreskin removed.

The NHS will fund this operation if all other treatments have been tried and steroid cream has failed to control the symptoms.

Cancer risk in women

Women with lichen sclerosus have a slightly increased risk of developing cancer of the vulva. (About 5% of women with lichen sclerosus develop cancer of the vulva).

It's therefore important to check your vulva regularly for any signs of change, as the earlier any cancer is detected, the easier it is to treat. Check for any thickening of the skin or any lumps, blisters or sores. Use a mirror and feel the area with your fingers.

Read more about the symptoms of vulval cancer: nhs.uk/Conditions/cancer-of...

patient.co.uk/health/lichen...

Page last reviewed: 06/02/2014

Next review due: 06/02/2016

Lichen Sclerosus

patient.co.uk/health/lichen...

What is lichen sclerosus and whom does it affect?

Lichen sclerosus is an uncommon skin condition. It used to be called lichen sclerosus et atrophicus, but it is often now just called lichen sclerosus. It most commonly affects the genital skin (vulva) of women. Less commonly it affects other areas of the skin. It can occur at any age but most commonly develops in young girls and also in women who have gone through their menopause. It is estimated that lichen sclerosus affects about 1 in 1,000 women. However, it may be more common than this, as some mild cases may go undiagnosed.

In males, lichen sclerosus affects the foreskin and end of the penis. It is less common than in women, affecting around 1 in 100,000 men. It is more common in young boys and also adult men. Lichen sclerosus in males is sometimes also called balanitis xerotica obliterans.

What are the symptoms of lichen sclerosus?

Women and girls - vulval and anal area

In a typical case, small pearly white spots develop on the genital skin (vulva). The spots are usually itchy. However, in some people, there is no itch or other discomfort and lichen sclerosus is sometimes diagnosed by chance when the genitals are examined by a doctor for another reason. In about 3 in 10 cases, the skin around the back passage (anus) is also affected. Sometimes only the skin around the anus is affected. Typically, the itch and irritation becomes persistent and distressing. The itch tends to be worse at night which can disturb sleep. Sometimes soreness rather than itch is the main symptom. Lichen sclerosus is a skin condition only and does not extend into the vagina or inside the anus.

Over time, the white spots may become larger and join together. The whole vulva and/or anal skin may then become white and be more fragile than normal. The fragile skin may become damaged, inflamed, raw, and prone to painful splitting and cracking. It may become painful to have sex. If the anal skin is affected, passing poo (faeces) may cause pain.

If left untreated, over months or years the vulva may shrink (atrophy). In some cases the changes of the vulval skin may make the entrance to the vagina narrower. This can make it difficult or painful to have sex. Also, thrush and other infections tend to be more common if the vulva is sore or cracked.

Symptoms may slowly get worse but not all the above symptoms may occur. It can take months or years from the first small spots to progress to more severe symptoms. At first the symptoms may be mistaken for thrush or other problems.

Men and boys - penis

White spots develop on the foreskin and end of the penis. These can be sore. In time, the changes to the affected skin may cause difficulty in retracting the foreskin and in passing urine. Erections may become painful. The anal skin is rarely affected in men.

Other areas of skin

Sometimes small patches of lichen sclerosus occur on other parts of the body. These look like small pearly white areas on the skin. Sometimes they occur in people who also have genital lichen sclerosus. Sometimes they occur without genital problems. Away from the genital area, patches of lichen sclerosus usually do not cause itch or other symptoms.

What causes lichen sclerosus?

The cause is not known. There is a type of inflammation within affected skin which causes changes to the structure of the affected skin. It is not clear why this happens.

The cause is possibly an autoimmune disease. This is when the body's immune system attacks a part of the body. This causes inflammation and damage to the affected part of the body. In people with lichen sclerosus the genital area of skin may be attacked by some parts of the immune system which then causes inflammation. However, this has not been proved and it is not known what triggers lichen sclerosus to develop.

About 1 in 4 people with lichen sclerosus have another autoimmune disease such as thyroid disease, vitiligo, or pernicious anaemia. This is why it is thought that lichen sclerosus is also an autoimmune disease.

Are there any complications from lichen sclerosus?

The itch and discomfort may cause much distress. The changes to the genital skin may cause sexual difficulties or problems in passing urine. There is also a small increased risk of developing cancer of the vulva. The exact risk is not known but it is thought that about 4 in 100 women with lichen sclerosus develop this cancer. In men there is a small increased risk of developing cancer of the penis. Again, the exact risk is unknown but it is thought that around 8 in 100 men with lichen sclerosus develop this cancer.

How is lichen sclerosus diagnosed?

The appearance is often fairly typical, in which case no further tests are needed. If the diagnosis is in doubt, a small sample (biopsy) of affected skin may be taken under local anaesthetic. The sample of skin is put under the microscope to look at the structure of the skin cells and tissues. This can confirm the diagnosis and rule out other disorders which can sometimes copy (mimic) this condition.

If lichen sclerosus is diagnosed it is usual also to do a routine blood test to check for an underactive thyroid gland. This is because of the association between lichen sclerosus and autoimmune diseases and, in particular, autoimmune thyroid disease. Up to 3 in 10 people with lichen sclerosus also have an underactive thyroid gland.

What is the treatment for lichen sclerosus?

Topical steroid

A strong steroid ointment or cream (topical steroid) is the main treatment (clobetasol or mometasone). Steroids reduce inflammation. It is usual to use the ointment or cream regularly for three months. A common plan is to use a single application at night for four weeks, followed by alternate nights for four weeks and then twice a week for four weeks. You must use the steroid as directed by your doctor. Keep on with treatment for as long as advised. Irritation tends to ease after two weeks or so, but the skin may take about three months of treatment to look and feel better.

The skin may return to normal if lichen sclerosus is diagnosed and treated with a topical steroid at an early stage. However, if the appearance of the skin has already changed a lot, the changes may not reverse much with topical steroid treatment, even though symptoms of itch and soreness are often relieved.

After the initial regular treatment for about three months, you may then only need to use the ointment or cream once or twice every 1-2 weeks to keep symptoms away.

Some general measures

Use a moisturising (emollient) cream or ointment instead of soap to clean the genital area. This is also soothing. Avoid bubble baths, scented soap, detergents, perfumes, etc, to the genital skin (vulva) of women. These may irritate the skin and make symptoms worse. Lubricants are useful during sex if having sex is painful.

Other treatments that are sometimes used

Other medicines. In the small number of cases where topical steroids do not help, a skin specialist may advise other medicines to reduce inflammation.

A vaginal dilator may be advised if you have any narrowing of the vaginal opening. A vaginal dilator is a cylinder-shaped piece of plastic that you insert into the vagina to gently stretch the vagina and vaginal opening. You use it each day for a time as directed by your doctor.

Surgery. An operation to widen the opening of the vagina is occasionally needed in women with severe lichen sclerosus which has caused narrowing of the vaginal entrance. (But note: regular use of a dilator as described above may prevent the need for surgery.)

Foreskin removal (circumcision) may be needed in some affected men or boys.

Some men may need other operations to improve the narrowing and scarring of the water pipe (urethra) caused by this condition.

Will it go away?

There is no permanent cure for lichen sclerosus. However, treatment with a topical steroid usually controls the symptoms of itch and soreness, and often prevents the condition from getting worse. Occasionally, the condition clears away for good for no apparent reason. This is more common in young girls when the condition often goes during puberty.

Check your vulva

As mentioned above, cancer of the genital skin (vulva) of women is an uncommon complication. Therefore, it is best to get into the habit of checking your vulva about once a month to look out for any signs of early vulval cancer. As a rule, the earlier any cancer is detected, the easier it is to treat. To check your vulva, use a hand-held mirror to see your vulva and use your fingers to feel your vulva. Get to know what your vulva looks and feels like, and see a doctor if any changes occur. For example, if you detect any thickening, warts, lumps, ulcers, blisters or sores.

Annalouk profile image
Annalouk

Thanks. It's definetely not lichen schlerosis. I believe it's Sjögren's and hopefully when I see my new rheumy next week they can tell me how to treat it.

lupus-support1 profile image
lupus-support1Administrator in reply to Annalouk

Please give us an update and I hope you have a successful appointment.

With good wishes,

Ros

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