Sexual intercourse

Hi Guppy,  I too have lost what you have and I 'm wondering where does LS go next to destroy our genitals. I can't seem to get it under control and is just getting worse.  The Emuaid isn't working or aloe vera. Soaking in baking soda occasionally. Not sure I should use the Clobestol for a few days to alleviate the white patches and scarring happening in my perineum.  LS is eating me up.  

Hi Guppy

I am 62 years old and new to this site but not new to LS, which I have had for five years.

I live in the UK and see a dermatologist every six months.

I would like to learn how you manage this so well, as you are also a sufferer of LS. Am I also right in thinking you don’t use steroids ?

Any tips on how you stay on top of the psychological side would be most welcomed.

Thank you so much 

Susan, not everyone can use the same, for example, I can't use olive oil.  You really need about three different creams/oils so that you can alternate because LS seems to like that better.  If you stick with the same stuff you can have problems.  If you have white patches I would definitely use the Clob to try to alleviate that.  Have you used it consistently in the past to try to get rid of the white plaques of skin? because I know that not everyone is always successful with that.

 

Hi, Violet, Where I'm at with my LS is that I don't have the white plaques of skin, and I don't have itching.  What I do have though is hardly any Labia minora, and my Vjay has reduced and is much smaller.  I need to dilate more regularly but I hate doing it.  I can't have sex as hubby is huge and I am small. But, I'm 56 and I'm just glad it happened at this age rather than being really young.

The only time I have problems is with food, but that's mainly because I have multiple chemical sensitivity and I react to many things, which in turn then affects my Lichen Sclerosus.  So, a glass of wine I can have two or three times a week, but any more and it makes my butt itch like crazy.  A piece of chocolate is okay, but three pieces affect my clitoris, it sounds crazy but its true, and there are some other women on this site almost as sensitive.

With regard to the steroid cream, I only use it now and then for emergencies which is usually on my clitoris which sometimes hurts after food, but other than that I don't need to use it.  I try to remember to put on oil on my Vjay before bed as that I believe helps to stop fusing.

With regard to the psychological side of things, I try not to dwell on the fact that I have lost my sexual health and I focus on the good things in life because I just feel lucky that I have what I have, and therefore I am grateful for small things.  I have other illnesses (Ulcerative Colitis and Lupus) and that kind of keeps things in perspective.

How are you doing with regard to your LS?

HI,  I use the Clob only when I have insane itching.  Don't really use it for fusing or white plaques.  Maybe I should. I worry about thinning skin.  I have all kinds of oils an creams I alternate with.  I haven't tried olive oil.  Maybe that's next.  I wish there was  way to top the deterioration of the parts.  

Susan- I’m so sorry the Emuaid isn’t working fir you, it has been a wonder for me. Hv you changed your diet and given up gluten, sugar and dairy? I am reading a book right now called The Autoimmune Fix by Dr Tom O’Bryan and it discusses healing our bodies by eliminating these three things, adding supplements to build immune system- not stimulate, there’s a difference and how to orevent other automimmune diseases from surfacing. 

It’s worth a read! I am inly on pg 57/297 and he’s explained so much and YES Lichen planus and Lichen Sclerosus are on his list of 159 AUTOIMMUNE DISEASES! 

Hi Guppy

Thank you so much for your reply 

Well I have never had the white plaques that I have seen in pictures, only terrible itching five years ago,  which I thought was thrush, so I ignored it, but then noticed the phimosis which sent me into a crazy panic hence the dermatologist input. I was then put onto topical steroids.

My main real fear is the vulval shrinking I see and feel,  poor hubby says it’s not shrinking “down there” but I know it is as I feel it happening and I can see the changes.

Gynaecologists say it’s partly post meno and partly LS but that doesn’t stop it happening does it ?

I would like to take your philosophical approach and be grateful for what I have, but shrinking vulva is an all consuming nightmare. I am now about to start an auto immune diet again diet by a Dr from the USA . I have the book . Not sure if I can mention her name on this site, but it’s similar to the Paleo diet

As many of the users of this site ask, where is it going next ?  

Thank you again Guppy, you sound as if you are doing really well with your mind management.

 

Hi Karen,  I have adjusted my diet quite a bit and taking supplements that have been recommended.  I'm also trying cannabis oil and it's only been a few days so the jury is still out.  I would be interested in your findings as it relates to LS in the book you are reading.

I’ll let you know. I an going to see a “ Functional Medicine Doctor” to hv testing done including gluten intolerance/ sensitivity, lactose intolerance/ sensitivity, thyroid antibidy test ( not thyroid hormone test) amonfst others. I will let you know hiw it all goes. 

I had a appointment with a doc as I thought it was fusing , she was standing in as mine was on holiday , she said she was a gynaecologist , she looked at it and said it was fine and to have sex more & it will help , she refused to give me estridoil to put on outside as I have vagifem and said you can’t have both but lots have been given both , so it’s easy to get confused .