LS prognosis

Joodie, you and I are on the same page. My fusing over the clitoris happened in a matter of weeks. Then I got the smegma cyst and the rest was history.

I'm pretty depressed that I'm well on my way to where you are and there's nothing I can do to stop it. When I embarked on my plan to use my fingers to 'dilate' when I do my twice-a-week pre-soak, I imagined it would be sort of fun. Ha! Instead I've been noticing these hard lumps of scar increasing up the back of my vagina and this band that feels like a rolled-up condom right around the rim. It hurts to stretch it and I'm not optimistic that I'm even helping.

The way I see it now is just like my mother's rheumatoid arthritis. Thanks to drugs, she has no pain, she's gone the distance beyond all expectations, she only has some swelling when she's stressed out or she overexerts her joints. But the disfigurement marches on.

I know the hardcore alt med fans with think I'm capitulating here, but on the contrary – it's really important to keep up the treatment so we don't get cancer. There's no time to fool around. And grinning and bearing painful sex is only koebnerizing the problem area, making it worse. I wish I could reverse all the painful sex I put up with.

If we want a communication campaign it should say, "Don't grin and bear it! Painful sex could mean you have lichen sclerosis. Google it. And see your doctor ASAP.

Maybe we should all carry Sharpies and just write it on stall doors.

I totally agree what you are saying here.  (If it wasn't for our own initiative, where would we be.)  The medical world does not necessarily move forward in this, but also not with a number of other health issues. In this we're not alone.   

I too was closed up overnight with a small opening for peeing left.  Joodie, I would start the ball rolling - make an appointment with your doctor, then go to a gyna who truly understands where you are at.  Talk about dilation of the opening still left.  There is some good knowledge out there that can help.  Don't wait too long anymore.  All goes under anestetics, it's very doable.  

I again took note of your excellent remarks, Morrell.  I'm collecting text for a possible flyer.  People need to know.  Early detection is key.  If we can not be helped sufficiently with what is offered, then perhaps other people can benefit from our experiences.  Let people know that this illness exists.   

The psychological part is the hardest, I find.  That is most likely also the hardest element to overcome when people notice something is wrong.  Especially in this 'oversexed' world.  How would our 'advertisement' come across?  

I think that no illness for which there is not really a cure, is easy to bare.  

 

Hanny said - "Talk about dilation of the opening still left.  There is some good knowledge out there that can help.  Don't wait too long anymore.  All goes under anestetics, it's very doable"

We can be cut to widen the opening, yes. That is no more than a simple basic solution though so I would like to know what the "good knowledge out there " is to cheer me . 

If ever it comes to that crunch for me I would ask for a catheter to be fitted during healing however .

I heard it closes up again ( well it would wouldn't it? it is LS skin don't forget ).

 

Hanny, whether we scrawl on doors with markers or leave flyers in washrooms we can put info out there as rebellious individuals. A flyer in the case at the doctor's office is easy to ignore and LS is something many of us have purposely ignored for too long. There's somthing urgent about messages left by real indivdual women anonymously in a place where a woman can take it in alone and go home and look it up. It's like a gift.

It's not a cut Joodie, it is a stretching.  That is a remarkable difference. No anti-biotics needed nor a catheter.   True, it takes a bit of courage to go for that first pee.  After that a better world opens.

I too was very worried that it would close up again.  But it didn't.  Just have been very diligent with baking soda rinsing, baking soda baths and loads of coconut oil, for starters.  And not to forget - the process of dilating.  Add to that my very strict diet: no sugar, alcohol, caffeine, soya, gluten.

Do I know which elements made the biggest difference?  No I don't.  Let's say it is the whole bundle that contributed.  Plus a ridiculous determination. (sometimes wavering)  

That's indeed a powerful thought Morrell - messages left by real women, anonymously, in a place where women can take it in alone and go home and look it up.  It could be a gift to someone, wondering for the longest time what it is that's bothering her especially at night. 

Sometimes you see these bulletin boards in supermarkets or other where everybody can pin their advertisements for their club, the baby sitting services they have to offer, the puppies that are for sale etc.  What do you think?  Could that be a place where one could put up a flyer like what we had in mind?  What other places are there, public places?  Can you think of any other?  

 

You have to get permission to post on bulletin boards. I like catching women with their pants down, alone, private. We can print a pile of flyers or business cards and a small scotch tape dispenser and tape them to the inside of cubicles – no need to vandalize. They only need a simple statement/question like I wrote above to twig someone to Google LS.

I don't remember how I found it and diagnosed myself. Probably Googled 'white patch and tear on perineum'. At that point I was not even thinking 'painful sex', because I never had any other kind.

"Painful sex could mean you have lichen sclerosis. It's not an STD. Google it. And see your doctor ASAP. Early diagnosis can make a huge difference."

Small is beautiful!  That could be a possible way to get the word out.  I wonder how breast cancer got a better immage?  My mother had to keep this a secret.  Again it was women who united, I think.  

Now I have to muster the courage.   

That's a good point, women used to be ashamed of breat cancer.

Just a thought....a lot of us are artists, what about we all donate a painting and get a gallery onboard with proceeds going to LS research to help raise awareness. Media coverage via newspaper, radio and those morning shows.        I think it would be a great way to get the message out - thoughts ladies?

Because these women were seen as "incomplete" women.  I was so shocked when I heard how people thought of people like my mother. 

So now I wonder how people will react when they know 'you're no good' anymore.  

Great idea.  However, I wonder who will be the researchers?  Or does the money have to come before the searcher?

deb, I think that's an excellent idea.  I tried to post my website, but I don't think its allowed, anyways you can Google me.. Artist Katie Black Fine Art America... I am happy to donate a painting if you do decide to go down that route at any time in the future.  I haven't a clue how you would even begin that kind of campaign, but I am sure that there are people that do...it would definitely help raise awareness...which is what is needed.

thanks for the info Hanny. I am using plastic dilators - bought a set of different sizes online a few years ago,am  on the smallest size, next size up too painful.

I too am on no gluten, also  dairy free, low sugar but started using soy milk instead of cow's.  I am not hopeful but a friend says I must at least try. i will give it six months unless anybody on here tells me it works.

The baking soda tip sounds good as is used in cancer too apparently, keeps the area alkaline.  Okay. Trying that too now - thanks! 76 years old and never too old to learn.

Hi Joodie,

After the experiment with candles covered with condoms, I was running out of the right size of candle.  (Don't feel bad - I started with a birthday cake candle) (at the time after the procedure in the hospital six times a day to keep all open) (now two times a day)  Thus purchased a set of plastic dilators as well.  Needs lots of oil and patience.  But does make a difference.  

You switched to soya milk, I went to coconut milk.  (I will become a coconut myself. (ha))  I felt unwell drinking cow milk a long time ago already, and soya didn't work for me either.  

Yes, alkaline thoughts go into the direction of cancer prevention as well.  Very old thoughts already, from the 1920's.  Imagine, it just recently was brought to my attention.  Well worth a try I think.

Good luck with all.  I hope that somehow it will become more liveable for you. 

  

Hi - love your art!

British Skin Foundation is the only charity dedicated to skin research and all the donations and fundraising events are crucial to enabling BSF to continue their research. This is just one that came up in a Google search. I really think we could pull something off and in doing so bring about the awareness that is needed with some possible research that just might help us all.

Hi , thanks for the imformation about BSF , I have never even heard of them , their profile is very low . l will look them up .

Hi , l like idea of using art to promote the LS cause , if all artists on this site and maybe some other artists that could be persuaded to contribute , would it be possible to hold an online auction ??? l admit l haven,t the first clue how to set this up , but there might be an IT expert amongst us ?? lt would raise awareness and money which could be put to research. Cancer , heart etc , all do coffee mornings , marathons ,  wear ribbons ........ and auctions. Just my thoughts  x

 

ps ... l almost forgot to say l loved your art ! your very good ! x

Hi, Thanks..Yes I agree, as Winifred said there are people out there that know how to approach this kind of thing....IT exprerts, or whatever, I also havent a clue how you would even start! but I do think that with all the artists on this site we could definitely use that to our advantage...at the end of the day its about raising awareness on this serious condition.

Good thoughts and ideas, I feel the same, but I havnt a clue, this kind of thing is not really my forte! but I know its a good idea.  We will have to see what happens, as I said I am happy to donate a large painting...

 

Thanks!

Hi - started a new discussion about this to keep it seperate. Can you reply on there?