Relationship with partner
Posted , 12 users are following.
I know its personnel thing but how do you all manage or continue to have a sexual relationship with this condition. Been with my husband over 35 years always had a great sex life. Gradually became quite rare over last year as LS has progressed. Hes great and very understanding. Its being quite uncomfortable that you cant then feeling great a few days but rather not as your worried it will flare again. I think im possibly going thru the motions of menopause too as my libido is zero, night sweats etc Seeing GP next week but dont know where to start! Any advise please
0 likes, 48 replies
karen23320 Su02
Posted
DEAR SU02- I was diagnosed a year ago and the first couple months were awful! As my clitoris disintegrated my orgasims went from a 10 to a 2. My husband has been very understanding through all of this and when we can, we do and when we can't we don't. I am 48, still get my period every 28 days, plenty of estrogen, tests came back no testosterone, so I was prescribed a clit cream with testosterone. I hv to be very careful as I sing professionally and did not want to go from a SOPRANO to a BASS! 😦 THE cream was very mild and got my level between an 8-10, which for me is fine. I too had a lower sex drive and was prescribed " scream cream" to increase blood flow to that area before sex. I am too self conscious of my changes in architecture to enjoy oral sex, but hubby stimulates me with his hand until I come, then we have intercourse. I have not experienced any vaginal atrophy or narrowing, so sex is fine, I just can't orgasim that way due to decreased sensitivity in clitoral area. I have an amazing vibrator from LELO that hubby got me for VALENTINE's DAY- it is amazing.... I only use all natural lubricants - like YeS! , and moisturize with coconut oil or emuaid. No flares in 8 months! As I have mot hone through menopause yet I don't know what will happen with decreased ESTROGEN, but I take each day as it comes, limit my sugar, eat healthy, take my supplements (27), keep my parts dry of urine and moisturize as needed. GOOD LUCK TO YOU!
Debbz1989 karen23320
Posted
Hi Karen23320 - Your post speaks to me because our situation sounds similar (age/period,etc) I was just diagnosed a month ago and am on Clob cream now. So - if you don't mind me asking.... you said your clitoris disintegrated... mine is fused to the hood and my doctor seems to think with use of Clob - it'll "unfuse" and get back to normal. (Which I'm HOPING will happen.) But - I am in the same boat with the orgasms.... have you found anything that helps with that?? If I'm lucky to achieve one - it's barely anything. 😦 SO frustrating!
karen23320 Debbz1989
Posted
HI DEB- Is your Dr by any chance a man? Because they have NO IDEA what this is like. The clob will hopefully prevent any further architectural changes ( like labia melting), but once it's gone, it's gone- not coming back. With regard to the clitoris, I noticed that mine used to be a plump, sensitive " fun" button, we both knew exactly how it felt and how to activate it. I loved oral sex with my hubby and orgasims were great! Now it is just a little nub, you can see the little white " pearl" if you look, but hood is gone and sensitivity is a 1-2. I did feel a little piece of it " sticking" to another part and used my fingernail to " release" it as best I could. But if DR. told you CLOB will bring it " back to normal" , that is incorrect. I enjoy intercourse, but cannot achieve orgasim that way, just by manual stimulation and it is a 1-2 and lasts for a couple seconds at best. I know from reading everyone's story that I am luckier than some, but it's sad to be 48 and be so frustrated. Are you in the USA? If so, talk to your DR. about "SCREAM cream" which is supposed to increase blood flow to tissues - applies to clit before sex- but once it's in I won't let hubby go down there, I don't know what it could do to his mouth/ lips/ tongue, sorry so descriptive. Some of the woman who hv gone through menopause use an estrogen cream that they say plumps them back up, but since I still hv my period that is not yet an option. I don't want your DR GIVING YOU FALSE HOPE, steroid will prevent , but NOT regrow lost tissue/ architecture.
Debbz1989 karen23320
Posted
Hi Karen - no my doctor is a woman.... 😕 I haven't "lost" anything yet, but my hood is definitely covering my clitoris. UGH!
Yes - I'm in the USA. I've heard of the scream cream... I'll have to ask her about it.
This is so frustrating... 😦 I wondering if my orgasms will always be the way they are now....?? Or if they'll ever get better?!
karen23320 Debbz1989
Posted
HI DEBB- When I referred to " lost architecture" Iwas referring mostly to the labia. I noticed that my left is pretty " typical", but my right has shrunk so much I can barely grasp it to check everything out.male Dr. I went to said maybe it has always been that way and you never noticed it before- duh! really? Been inserting tampons since eighth grade and never noticed it? Idiot! My hood also doesn't retract and the plumpness that was once there is gone. My very first symptoms were a clitoral sensitivity, especially to underwear seams, so I would cushion clit with a round or square cotton make- up wipe. I started wearing looser pants and more skirts/ dresses, and I felt a buzzing in my clit, sometimes a sharp pain it it. I looked at it and there was a white bump that I tried to scrape off with my nail. It wasn't until 3-4 months later that I went to see my OB/ gyn because I felt " raw" after sex and it seemed to take weeks to feel better down there. It hurt to pee, but on the skin, not like a UtI, and the pinpricks in my clitoris continued. My labia will never come back, but I'm hoping the CLOB will prevent further loss.
Debbz1989 karen23320
Posted
Thanks Karen for all the info. 😃 It helps to hear from other women going thru the same thing. I HATE that anyone has to go thru this..... but I'm thankful I'm not alone and I can ask others about it.
frankie68 Su02
Posted
Hi ladies I have been reading all your replies on this delicate matter and it does make me feel I'm not alone! Hope they are helping you too su02.
I have a question, you say clitoris "fused to the hood" can anyone explain this and how it might look. After my reply this morning I had a closer look at things down there. I do check every week or so. Been a bit sore last day or so and the area in the crease of what is left of one side labia is red so dermovate on that area for sure. The area around clitoris does look different although I havent ever examined it closely so I don't know what it should look like.
Sure it's not like it used to be so is this fusing?
This illness get you paranoid!!
Su02 frankie68
Posted
yrs Frankie it is good to hear some feedback back on this delicate issue as it doesnt crop up alot. I do check down there as much as possible but as theres been alot of change its hard to remember what it should look like! ha I have a sore bit thats on the inner side of labia which extends into crease further down which makes me paranoid having intercourse. This condition seems so common now
Debbz1989 frankie68
Posted
Hi Frankie68.... my clitoris is fused to the hood. It's hard to explain what it looks like... but I'll try to explain how mine looks. I used to be able to pull back the hood and see a plump clitoris up front and sticking out when the skin around it was pulled back. Now - it looks like it's hiding - and has receded back.... so when I try pulling the skin back - I can't. It looks like there's a hole there with my clitoris shrunk back into the hole. It's really hard to explain. And the skin around the clitoris has turned white.
Hope this helps.
Deb
Thunder_Thighs Su02
Posted
hello ladies! there are so many of us out there!! I have been suffering with LS for years but only took some action when my aunt died of cancer of the vulva!
As for sex, that was non existent and had a very understanding husband! last January I had an operation to smooth out the scarring from stitches I had from giving birth 28 years ago, stretching of my virgina so I could have sex again and a BIOPSY to confirm my LS! I still get flare ups, but have not looked back!
jackie15098 Su02
Posted
My problem was that everything was so sensitive with the clitoris every time I moved and with in minutes I had an orgasm. It was in embarrassing! My doctor put me on the clob ointment and now things are not sensitive, itchy, red, white, painful, bleeding, etc. I have discovered that there are men out there that are suffering from the same thing that we are suffering from, they just don’t talk about it and it is a shame!! I hope and pray to God that my daughter does not have to go through this when she goes through menopause.
jackie15098 Su02
Posted
Will a GP really have answers for you? I personally would see a gynecologist because they can do a biopsy and find out the answers.
Su02 jackie15098
Posted
Most probably not, I have an open letter appointment which i can trigger an appt with gyne but that could take months here in the UK. I will trigger it for sure but will see the dr in the meantime maybe she can give me some advise
jackie15098 Su02
Posted
UK...I was not aware that this discussion forum was circulating the world. I am here in the United States in Fort Lauderdale Florida. Good luck.
Thunder_Thighs Su02
Posted
I was referred to dermatology in the first instance to get the LS under control, then they referred me to gyn for sure I of my parts😫
jackie15098 Thunder_Thighs
Posted
I was going to go to a dermatologist first but then I decided against it. I waited, and waited, I thought I had a yeast infection. when I touched my labia and realized it felt like sandpaper, I knew this was a serious problem. Any one out there that is reading this and believes or thinks they have a yeast infection and tries to treat it with the over-the-counter drugs please think twice. This is one disease that you don’t want to mess around with.
Thunder_Thighs jackie15098
Posted
Jackie, my mum has lichen Planus and my aunt died of cancer of the vulvar! I understand that LS is believed to be genetic! I have educated all the females in my family as to what to look for, initial symptoms etc! I had surgery to correct some things but still on medication and always will be as all you can do is manage it! I wish this condition was highlighted more in the media and more awareness! this forum has been an invaluable source of information and support!😁
jackie15098 Thunder_Thighs
Posted
Common symptoms might include:
Vulvar itching (very common)
Anal itching, bleeding, or pain
Pain during sex
Skin bruising and tearing
Blisters
Easy bleeding from minor rubbing of the skin
Pain or bleeding when having a bowel movement
Trouble urinating or pain with urination
Painful erections (in men)
Lichen sclerosus doesn’t affect the inner reproductive organs, such as the vagina or uterus.