New to LS - start here

Hi I have just been told I have LS

And feel very scared. So glad I found this site as my husband is trying to be unstanding

But says he doesn't want to know about it or talk about it

I am 51 I wanted to ask does it get worse

At the moment it is really painful to have sex and afterwards I am cut and very sore

I have never typed before on a chat I am very new to computers so hope I have done this right ha

Thank you

hello, so glad to find a group who share LS, although its a group I'm sure we all wish we were not part of.i am a 63 year old woman, i was diagnosed,in 2009, after a very long time of being told i was pre menopausal and it was vaginal dryness. by then i had little trust in the drs and their advice and the emotional part of this was overwhelming. i took the medication to no avail..finally i went back and was told i required a perineorrhapy. i had this in 2010. the follow up and care was unkind, which increased my desire to hide again. 

i did this for a year or so until my LS was really increasing in severity..

finally out of desperation, as my GP, as informed as he was was unable to find me someone who could assist me, i discovered a specialist in Toronto at Sunnybrook hospital. after a few months of getting the LS under control i had another Periophony and a laser vapourization to remove scar tissue, i believe this was 2012.

since then by using the Clobestesol and the vagifem i have kept it under  control with a few set backs. i recently felt there had been another change in the vagina/rectum and had a biopsy to see if i had vulvar cancer, thank god i didnt.  LS is really providing me time for reflection. this condition is so such a roller coaster ride, i wonder if others have the same feelings. i have not been able to have intercourse for 10 years with my husband , who i think is scared of my vagina after all its been thru. at a time when intimacy is so appreciated. when i go to the dr they are concerned with the physical issues yet i am ready to cry about how this affects my discomfort in life both physically and emotionally. 

i also wonder if anyone has done a study to see if this is in anyway a result of sexual abuse, which i suffered as a  child and then again as a young teenager, is this traumatized tissue? 

your posts have made me feel i am not alone and look forward to further discussion and support.

I'm newly diagnosed and a bit freaked out. I'm 61 and had a complete hysterectomy at 48. Not on any hormone therapy. I have been very sore in anal / labia area and nothing I tried was working. I thought it was hemorrhoids, so used Preparation H. Nada. I thought maybe it was a yeast infection - so bought some Monistat - made it worse. The skin has split above my clitoris, and polysporin didn't help.

History: I have a tendency to get cysts in that area and have had many removed when I was younger. I developed one on the back of my left butt cheek crease. Doctor prescribed Fucidin cream. I had a few at the top of my right leg (a cluster almost) - doctor prescribed Lamisil cream. Both are antifungal. The last cream helped but didn't clear them up so I continued to use it for 2 tubes. Finally one day the cysts seemed to burst (nasty) and seemed to go away. The itchiness did not. I used a powder of cornstarch and calamine to reduce the sweating - it helped a bit. I washed frequently and tried to keep the area dry. I tried to wash with a soap that contained tea tree oil - it burned so I stopped. I ended up just using a non-soap, ph neutral wash. I tried to use a barrier cream to protect it so it could heal (didn't help).

I have other sensitivities - to many drugs and chemicals that seemed to be getting worse. I had to give up dairy completely because of skin issues. Flouride made my gums bleed. Even dish soap irritated my skin. I switched to a plant-based laundry soap but I think it was already too late.

I saw a different doctor today, she took one look and said it was LS. She prescribed Clobetasol but told me to use it sparingly once a day for 4 days but stop as soon as I feel relief and only use it once a week for maintenance. She is sending me to a gynecologist. 

Part of why I didn't notice an issue sooner is because I've been prone to itchy down there for most of my adult life. I also have IBS, sometimes hemorrhoids (and they can be itchy). A colonoscopy a few years ago found 8 large pre-cancerous polyps, and I am scheduled for another. I may have an anal fissure. 

I will find a way to deal with this. I had osteoporosis and moved my numbers into the normal range without drugs. I used to be sick all the time (colds, flu, pneumonia) but I haven't had any of that for the past 13 years - strong immune system. I have high cholesterol but can't tolerate any cholesterol lowering medications. 

I don't know if autoimmune disorders are hereditary but my daughter has vitiligo which is also an AI disorder. 

I will listen to any and all advice - I've already read a lot here (thank you all so much!) and I will try anything and everything. I see so many commonalities with what others have posted. I'm so grateful to have found this site. 

I’ll use this pre-made intro, thank you!

Just had first appointment today, referred out to obgyn and an rx for clobetasol. 

How long have you had a diagnosis of LS? Age 57

Do you suspect that you have had this for much longer? A couple years

Is it currently under control? God no!

When did the irritation start?  Months -2 yrs

Has the area always been irritable? No

Are you suffering a flare at the moment? Yes

If so, can you attribute the cause to anything specific?  Stress & untreated until today

Do you suspect that other members of your family may have had/have LS? Yes, my mom

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

Describe your skin type: Mix of light & olive

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …?  Yes, Ankylosing Spondylitis 

Have you been tested for high cholesterol? No

Do you suffer from high blood pressure? No, mine is low

Statins? N/A

Diet and exercise? Working on 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? No

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

Do you suffer from anxiety? Yes, crushing anxiety 

Have you taken steps to reduce your stress? Yes, for fifteen years

If so what have you done? Meditation, Yoga, mindfulness, prayer

Do you have a flare-up of LS if something is causing you stress? Yes! It’s immediate!

Have you had surgery related to LS? No

Biopsy: No

& hope I don’t have to! 😰

Have you experienced other surgery? No, hysteroscopy in 2005

Episiotomy: Yes

Please list any of the prescribed topical creams you use currently

 Clobetasol (just started today-immediate relief)

Emollients: 

Coconut oil

Coconut oil with rso

Jojoba oil

Avocado oil

Barrier creams: no

Alternative treatments: No

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

When do you wash? Shower in the morning 

How do you dry yourself? Towel or blow dry on cool

Do you wash in hot or cold water? Warm

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

Does pee sting you? Sometimes 

What can you no longer wear? Tight pants

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

Do any foods seem to make the LS worse?  Not sure

Is this discomfort on already damaged skin?  Yes but only damaged from the LS I think 

Thanks for being here. 

I was diagnosed with LS about 8 weeks ago. I had been seeing pelvic medical centre specialist  following pelvic surgery I had eight months ago.  I thought I had recurrent thrush, but now I know it is LS and has been coming on for the past 5 months.

To my great good  fortune, my specialist gave me  a wound  dressing ointment called

Strata XRT which has been used on burns for a long time and is currently being trialled on LS . It has transformed my symptoms radically in just 6 weeks,  I have read many posts from people suffering with LS and just want to share this information. I am feeling so much better and my doctor is hopeful that a full recovery is possible for me.

Although suspect i have had it for years.

Scared and sad as my life is changing for the better although i have to say i think the stress i have been going through has been a contributor.

I have exzema and hay fever and i am a freckled complexion.

I have always suffered with perfumes and strong creams so avoid like the plague.

I do not suffer from high blood pressure or weght issues and i am very active.

I do take HRT now this is recent and high dose antihistamine always due to all my allergies.

I am physically fit and very active as recently re trained as a Therapist .

Devastated re sex life as i do not want to due to the pain ect .

Can anyone tell me please does it go into remission at all ? 

Thank you Suzie xx