33 with lichen sclerosus and very scared

Hi Christine,

Reading your writing makes me think that your kind of LS corresponds somewhat with mine.  I won't say it is the same, who am I to know.  But like to add something - LS has similarities with how cancer works.  But it is not cancer.  I'm recovering from a dilation procedure, and my doctor didn't do a biopsy, which he thought he would.  The skin looked fine and all worked out well.  He also checked the vagina - again proof that LS doesn't do vagina.  

Hi, Hanny,  I have been thinking of you since Monday.  I am glad to read above in your letter to Christine that you are over the dreaded day and everything is fine. 

Thanks Patricia.  I'm sure it helped that so many people were thinking of me while the procedure was done.  I came out quit well.  

Hanny--how are you feeling?  How did it go?  Are you peeing more easily?  I've been thinking of you!  --Suzanne

Thanks Suzanne for thinking of me.  I may sound like I'm repeating myself, but I believe when a lot of people are thinking with you, life is better.  

I'm now in the healing stage. One day is better than the other.  Yesterday was not a good day, I hope today will be better.  It's painful, but doable.  (I'm allergic to most painkillers, therefore I'm better without)  

To be able to urinate like 'normal' people is of course great.  Though the skin is so very sensitive and affected by the urine. I'm rinsing with warm water twice with the help of a squirt bottle.  (I have been doing that all the way, but now even more important, to reduce the pain.)

I'm using my special 'cushion' again and cart it with me wherever I go.  Walking is a bit of a challenge at the moment.  Any rubbing is not well received by the sensitive skin, sensitive due to the stretching that has taken place.  So ... I sort of 'skate walk' to keep it all happy down there.  

I'm enjoying the beautiful whether every day and am doing some yardwork, to the best of my ability.  Stooping down to pull weeds is not my best thing right now.  But raking and pruning at eye or arm level is okay.  And the sun is so pleasant at the moment.  We are enjoying a beautiful Indian Summer.    

whether should be wEAther of course

Hanny, you are a model of letting the outdoors make your day! Is the next dilation scheduled or does it depend on your healing?

hanny, since we are all so open on this forum, (no embarassment allowed) here is something that might help with the peeing...pee through a toilet paper cardboard tube...it may sound odd, but it keeps the uriine off the skin...   and if you have one of those plastic sitz bath basins, sitting with warm water on the area will help.  When I had my first baby, the episiotomy was so bad (still looks litke a railroad track after all these years)  the only thing that helpedd with the pain was my mom hooked up a heat lamp so the heat was felt on the area and it helped very much to dull the pain.....

Hi Morrell,

Thanks.  I had an appointment again yesterday, but unfortunately the specialist was called away to deliver a baby.  Later in the day he phoned me to appologize for this and asked how things were going.  We discussed 'the picture' .  He wondered about the pain.  Perhaps the third day is the worse one.  (This morning is somewhat better.)  But what I'm doing seems to be 'what one does.'

He had taught me well earlier this week, after it looked all of a sudden as if the fusing had begun again.  It did not, thank god.  It's sensitive, which is logical, but the LS seems to behave itself.  

I indeed think that the next step depends on the healing.  I'm a slow healer, so it may take a bit more time.  A matter of 'wait and see'.  And keeping a very close eye on things.  I have to say that my specialist is guiding me well.  Both my family physician and the specialist have been very supportive and helpfull.  

Thanks also to all of you, who kept me in your thoughts.  Thank you Patricia for another suggestion.    

 

Hi Hanny--I'm so hopeful that each day will be closer to a return to normal.  You sound bruised and sore.  That's so much to endure for this frustrating disorder. And no painkillers. I'm also allergic to most painkillers and react badly to most medications, so I understand the need to get through it without.  Not easy though. I'm glad that your procedure is done and my hope is that you continue to feel better and heal.  I'm loving the Indian Summer, too--wonderful weather. Thanks for letting us know and please continue to give us updates.  --Suzanne

The toiletpaper cardboard funnel is a good thought.  The sitzbath is not yet recommended.  I have to shower instead, was the advise.  

All is well, Suzanne.  You probably know what it is like to go without painkillers.  At first you're shaking, but a few days later it's only pain and discomfort.  

This afternoon I will be out in the sun again, doing whatever is possible in the yard, just to feel useful.  

My biopsy coming up isn't for ls. It's for my cervix. I have abnormal cells (lsil low grade cell changes). My appt for the dermatologist isn't till Feb. I'm hoping this gyno will just end up handling both for me.

Oh, I see. Christine, the white patches of LS are just a thick layer of dead skin cells, kind of like a burst blister. We're precribed steroid ointment from the top of the list of strengths, so it can take off that top layer and penetrate deeply to the 'basement' layer where the inflammatory cells do their business and slow it down. Once the meds have had some time (can be months) to work you're likely to see that skin nice and pink again. LS only gets out of control in two ways: 1. no checkups for years (you've got that covered) and 2. poor management during repeated major flare-ups will result in fusing and atrophy.  Our member Hanny here seems to have the most virulent form of LS, she's older and has such extensive fusing she needed this dilation procedure to be able to pass urine. And she's doing OK with even that.

We're here for you whenever fear gets the better of you.

I'm concerned from that my doctors have this wrong. It's not white patches of skin for me. The skin seems pretty normal it's just lost pigmentation.  It's kind of in a figure 8. It does get itchy though. 

Totally - regular check-ups are so important.  Someone who may know more and who can give you some support or direction.

Number 2 - poor management  .. I like to add:  'the unknown' of why LS reacts the way it does.

There is a viciousness with my LS that I compare with a dragon with eleven heads.  You think you winn, doing everything possible, and then it strikes in spite of. (O yes, there is the sugar and the stress of course)(but even when you do 'obey' the diet)

 

My doctor and I have discussed this a bit further and see the process as similar to the way cancer behaves and yet it is not cancer.  The fact remains that there are no clear answers.  

And so I, like many, am making the best of it.    

Christine, it's not white patches of skin for me either. My skin looks pretty normal but also has lost pigmentation.  It also does get itchy.  Your variety of LS is different from Morrell's. My skin does not crack. But there is fusing.  How is your fusing? 

As Dr. Goldstein said, there may be four different kinds of LS... or more.

My doctor has a few other LS patients, but none the same.