New to LS - start here

Hi, I got diagnosed with LS a couple of months ago and not coping very well. It got quite bad where it seemed to ?spread all the way round the back up between my cheeks and even out into the groin there are white spots! I have been given an inteligel cushion to sit on for work and home as so painful to sit, am taking lactulose, and using dermovate all over. have started changing aspects of diet but struggling as gp said don't change anything be normal but carrying around a cushion and unable to sit isn't Normal.

If anyone can empathise with this I would love to talk as this is so lonely to live with.

Oh, Debbie, that sounds quite serious. Four years ago I was really stressed out and my entire inner thighs were swollen, hard, tender and burning. All I can say is that the best thing you can do is figure out what's really bothering you and try to deal with it. I got into a relationship too quickly and was a mess for the first year. Now after four years I'm single again and my skin is very good. I quit having sex with him two years ago and that's what really fixed me up. I also cut way back on sugar. It's the one food everyone agrees makes inflammation worse.

Sorry I didn't see your post sooner.

Hi, thanks for your reply, i have had a lot of stress with selling my flat, my children having operations and a not very supportive husband, he understands about this condition now but gets me stressed over simple things.

I am hopefully at the end of whats been a very highly stressful period where in 2 weeks time we will have completed on the sale of my flat and go on holiday to destress with my whole family who are all aware and very supportive.

I have started eating more tomatoes, taking evening primrose oil, cut down on sugar intake, losing weight and no wine!!!! somethings are settling down but some are not, is there anything else i should be doing or thinking about.

Well, that all sounds good. Try to believe the LS will settle down, but accept that it will take time, probably months. Freaking out about the LS is counter-productive. Really make an effort to rinse with baking soda water and keep lubricated with Vaseline or coconut oil as a barrier against urine. I sleep in loose cotton things so my thighs aren't touching each other as I sleep. I've kept this habit for years since they cleared up. If I wear a night dress I tuck it between my legs, or I wear cotton knit pajama pants, extra loose.

How long have you had a diagnosis of LS? Age 28

Do you suspect that you have had this for much longer? All adult life

Is it currently under control? somewhat

When did the irritation start? Age 20

Has the area always been irritable? Some remissions for a month or so at a time 

Are you suffering a flare at the moment? Yes (since Feb 2015

If so, can you attribute the cause to anything specific?No

Do you suspect that other members of your family may have had/have LS? No

Do you have any other skin conditions along with the LS?  No, just very sensitive skin 

Describe your skin type: Med

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? No

Have you been tested for high cholesterol? No

Do you suffer from high blood pressure? N/A

Statins? N/A

Diet and exercise? Healthy diet

Do you suffer from high blood pressure? No

If so are you being treated for this? N/A

Do you suffer from low blood pressure? At times, esp when Pregnant

If so are you being treated for this? No

Do you suffer from anxiety? No

Have you taken steps to reduce your stress? Yes

If so what have you done? Meditation, therapy, medication, gardening

Do you have a flare-up of LS if something is causing you stress? Yes

Have you had surgery related to LS? Yes, vulval vastebulectomy

Biopsy: yes

Have you experienced other surgery? Yes, 2 c-sections

Episiotomy: No

Please list any of the prescribed topical creams you use currently

Dermovate ointment (Clobetasol), Estrogen cream (Premarin), 

Emollients: Aquaphor, oil/beeswax cream

Barrier creams: no

Alternative treatments: No

What sort of products do you avoid when cleaning the area? Soap, scents

When do you wash? Before bed

How do you dry yourself? Towel, sometimes with hairdryer

Do you wash in hot or cold water? Hot

Do you dread having a poo? Yes What happens? The skin cracks, it hurts, and I bleed

Does pee sting you? Sometimes What do you do about it? Nothing

What can you no longer wear? Poly Panties, Hosery, tights, pants

What do you now wear? Loose cotton panties, skirtsooser

Do any foods seem to make the LS worse? Haven't decided

Is this discomfort on already damaged skin? Yes, my perinium is constantly red, sore. It makes the area around the anus red and sore/itchy

I am so relieved to have found this forum . I am new here so a little unsure how this works. I was diagnosed with LS in 2012 after a biospy . It has affected my mental health too , as i have switched off to the idea of even having a intamate relationship . My friends dont understand how this disease makes me ( and others ) feel , no one has ever heard of it !

Hi Donna,

Good that you found us. Nobody would say a man with a raw penis who didn't want to have sex has a 'mental health problem'.

I put up with demanding spouses and had painful sex for many years. I'm 64 and quite content to have retired from sex. Maybe I always had a low drive, but Ive had LS since I first became sexually active.

I was wondering what works for the insane itch ? I have clobetasol but the itch is beyond imaginable...like I am going to go nuts. And yes at night time worse.  ANy suggestions please ?

 

haha Morrell yes you have a point there ! I guess what i really meant is sometimes i think it would be nice to have a partner but then i just think i have to bannish that thought . But maybe its a blessing in disguise since i have always had more trouble with the oposite sex! The pain having intercourse is excruciating ( i seem to remember !) Thats really awful that you have had LS for all these years .

The upside of the end of sex is the final realisation that I've always had less solitude than I've really needed. So now that I really appreciate my life in the woods, I wouldn't trade it for a bit of snuggling. That said, I'm not lacking intimacy, because I'm very fortunate to have great family and an amazing circle of close friends.

Wendy, you might need an antihistamine. I took generic chlorpheniramine at night for years for the itching of psoriasis. Keep your fingernails very short so if you give in to the urge to scratch, you won't do any damage. Cold aloe vera juice is soothing - keep it in the fridge. It's not terribly expensive, because people drink it by the quart.

I was spreading thick amounts of steroids for 6 weeks. Totally depressed as it seemed to be getting worse. I've taken 2 days off work. Step 1 I listened to the lecture. I had a warm bath for 20 mins the rubbed the steroid (pea size amount) in for 90 seconds. I got an app for relaxation and quitting sugar. 

The improvement after just one nights sleep is staggering, yesterday am I was crying and depressed but now I feel I understand what I'm dealing with and how to cope. Debbie I send you support, xxx

How long have you had a diagnosis of LS? Started at age 39

Do you suspect that you have had this for much longer? No, I think this may have started as a result of a miscarriage, following a DC.

Is it currently under control? No,

When did the irritation start? Age 38

Has the area always been irritable? Since diagnosis, but there was a misdiagnosis first, I was told I had Morphea. I had a second opinion about 6 months ago, and was told I did not have Morphea but LS. I did have feeling that this was the case. But was extremely upset, as the doc was so uncaring.

Are you suffering a flare at the moment? Yes (27 Dec 2016)

If so, can you attribute the cause to anything specific? On holiday, so difficult to say, but it does put pressure on also didn't bring steroid cream with me.

Do you suspect that other members of your family may have had/have LS? No, but my mother may have but did not discuss, and she as passed away.

Do you have any other skin conditions along with the LS? No

Describe your skin type: Olive, do not burn easily

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? No

Have you been tested for high cholesterol? No

Do you suffer from high blood pressure? N/A

Statins? N/A

Diet and exercise? Healthy diet, regular exercise

Do you suffer from high blood pressure? No

If so are you being treated for this? N/A

Do you suffer from low blood pressure? No

If so are you being treated for this? N/A

Do you suffer from anxiety? Yes on and off

Have you taken steps to reduce your stress? Yes, As best I can

If so what have you done? Meditation, yoga, diet

Do you have a flare-up of LS if something is causing you stress? Yes

Have you had surgery related to LS? No

Biopsy: Yes Morphea was diagnosed

Have you experienced other surgery? No

Episiotomy: no

Please list any of the prescribed topical creams you use currently

Dermovate (Clobetasol)

Emollients: Herbal olive oil - based ointment, herbal coconut oil/beeswax cream

Barrier creams: no

Alternative treatments: no

What sort of products do you avoid when cleaning the area? Soap, scents

When do you wash? Before bed

How do you dry yourself? Towel

Do you wash in hot or cold water? Warm

Do you dread having a poo? No What happens? N/A

Does pee sting you? No What do you do about it? N/A

What can you no longer wear? Tight pants

What do you now wear? Loose cotton panties, loose trousers (looser at home) skirts

Do any foods seem to make the LS worse? Sugar

Is this discomfort on already damaged skin? Raw and itchy

How long have you had a diagnosis of LS? Age 5 (am currently 15)

Do you suspect that you have had this for much longer? I had it for about a year or so more just wasn't diagnosed till the decided to get a biopsy.

Is it currently under control? Somewhat

When did the irritation start? Around age 4

Has the area always been irritable? Somewhat

Are you suffering a flare at the moment? Yes (may, 2, 2017)

If so, can you attribute the cause to anything specific? I tend to scratch bc of it being irritated. I scratch unknowingly it's usually in my sleep.

Do you suspect that other members of your family may have had/have LS? No

Do you have any other skin conditions along with the LS? No

Describe your skin type: Olive.

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? No

Diet and exercise? Healthy diet, regular exercise

Do you have a flare-up of LS if something is causing you stress? No

Have you had surgery related to LS? No

Biopsy: Yes (age 5)

Have you experienced other surgery? No

Episiotomy: No

Please list any of the prescribed topical creams you use currently

Dermovate (Clobetasol)

Barrier creams: Yes

I have been subscribed many creams throughout the years some work some dont some only help for so long.

What sort of products do you avoid when cleaning the area? Soap & scents

When do you wash? Before bed

How do you dry yourself? Towel

Do you wash in hot or cold water? Warm

Does pee sting you? No What do you do about it? It burns, best thing i can tell you is to not wipe! I use a squirt bottle to rinse it off rather than wiping bc i find that painful.

What can you no longer wear? Any type of tight underwear or pants are also irritating. And tampons, i have experienced a lot of pain while having a flare up and being on my period. Tampons make it so much worse

What do you now wear? Loose cotton panties, loose trousers, sometimes when i have a cream on i will tend to skip underwear and wear really baggy shorts to let the area air out.

Is this discomfort on already damaged skin? It makes the everything really red, itchy, scratchy, and blisters form also the skin bleeds from these blisters.

Also, I am 15, and ever since I was 5 years old I was told that I may never be able to find sex pleasureable may not be able to tolerate it, and that i may not be able to conceive or give birth. I know i'm only 15 and I shouldn't even be worried about sexual activity but this scares me a lot... like I think about this and I cry at nights... LS is super stressful... and really scary. Ive had it for 10 years, they said it might go away for me after i hit puberty, and that gave me some hope, but it didn't stop and i still stuffer with it today. If anyone has had this as a child (i know it's super rare) can they please tell me there story. I haven't found anyone who has experienced this as a child and had it go through adulthood. Thanks.

Hi jade,

I am also 15 suffering from LS and as horrible as it is it's encouraging to know someone my age also has it too

I too am relieved that I have found this forum. However my case seems so much more complicated. I have an extreme severe case of LS. Where my Labia is completely fused . Going to an Urogynecologist on the last appt she numbed the Labia and actually split the fused  area open  so  painful . It was so fused it blocked the urethra . Which meant  the emptying of the bladder was never completed which then caused a cyst. This procedure had to be done twice now due to the fact that  the skin keeps on fusing. I am so depressed from this disease.  Going back to the Dr today for a checkup. I also get lazer  treatments called the Mona Lisa which brings blood back to the area because as a cancer survivor i cannot take any hormones. Has anyone else displayed any of these symptoms

. 

Have you read the thread on using baking soda and one thread on borax solution?  There have been women with good success stories of release of fusing etc. 

Also, a lady on here named Hanny, had a more severe case and she is very encouraging as she has found some answers. Hopefully she can give you some direction.   

Dear Denise,  I'm 72 and recently diagnosed. I was So so grateful last month to find kweega's comment of a couple years ago about discovering the need for Vitamin D3! oh my gosh! what a relief it has all been receding even before I was able to get a gynecology appt. I can't begin to imagine what you have been through... but I hope you check out vita min D and autoimmune and thyroid issues. Many blessings, Nancy in North Carolina 

i find what really helps me is putting my microwavable teddy that heats up between my legs (poor teddy haha) i find the heat kinda confuses the itching sore feeling. i imagine you could use a hot water bottle, but the way i can kinda mold the teddy to my liking is a benefit.Hope it helps 😃

can someone post the link for the video for me? i cant seem to find it. i am new on here.