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Clitoral and Labial Fusing

Posted , 25 users are following.

Chris1230
Chris1230

Hello everyone!  It has been a LONG time since I posted here but have been reading for two days.  Not sure exactly what I'm looking for...maybe just some reassurance or someone to talk to.

To start, I am 53 years old now and am officially menopausal.  Over the last 10 years, I've had my one or two GYNs tell me they thought I had LS.  I had lots of burning symptoms, always thought I had an infection, etc.  When I was younger, I used to have noticeable discoloration.  As I got older, that sort of thing seemed to stop.  

I've never in my life had any noticeable labia minora so I don't know if they fused/flattened when I was very young or I was born that way.  I always felt I was abnormal in that regard but who knows.

As I entered menopause, the only thing I really noticed was that my clitoral area seemed to be shrinking and less pronounced.  This was really when I was feeling it, not visually--just not as plump as it used to be, but what is?  I never really looked at it.  Upon entering menopause, I actually started to feel better down there because I had much less natural discharge and I think that helped.  My GYN prescribed some Premarin cream and told me to "use it when I felt like it."

At some point through all of this, I did have a vulvar biopsy which came back negative,although I can't say I have a lot of faith in that biopsy or the pathology.  I just mean to say that I don't know if I have LS or not, but I have a problem.

So last week, I noticed a sensation of a slight pinprick occasionally in the clitoral area.  It was extremely minor and with my lifelong irriations, it was barely a blip in my radar.  But after 3 days of it happening, I thought I should investigate. Upon palpation, I felt a hard nodule in my clitoral hood area (prepuce) that goes all the way up to where the labia majora join together at the top.  As you get close to the clitoris, it flattens and feels normal.  The lump does not hurt at all and is rubbery, but the clitoris is what the sensation comes from.

On visual examination, the area with the lump is is normal looking.  However, I noticed that I can no longer actually see my clitoris (the hood won't pull back) and below the area, the skin is fused together.  Vaginal opening is normal.  

Got into my doctor on Friday and he diagnosed with clitoral agglutination.  Gave me premarin cream to use everyday for two weeks, told me to manually "work" the area 2-3 times a day. 

I am just sick over this.  I didn't even know it was happening.  As for the lump, he doesn't think it's anything and may be due to the clitoral hood not functiong/moving properly so it's swelling.  I can find NOTHING on the net about this sort of thing.

I've been reading this site since yesterday.  Read all about the borax stuff, which I may try.  I also have clobetesol from awhile ago that I will use.One side of my clitoral hood is hardened and whitish.

I guess I'm looking on de-fusion success stories or something.  I can't stop thinking about this and what it means for me lifelong.

Thanks,

Christine

1 like, 56 replies

56 Replies

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  • ruth34896
    ruth34896 Chris1230

    Posted

    I have Lichtenstein sclerosis. It was found about the same time that my lymphoma was found, so had to put treatment on the back burner for the LS until was done with lymphoma treatment. Went back to GYN....they forgot to check, but probably was gone they said. 9 months in total remission for the lymphoma, and up pops urinary issues. Pain in my bladder and uretha. Urologist said, oh oh, blood in urine, but no infection, yeast or anything. They said I have the melding and need surgery. What they neglected to tell me, is that they are removing a mass and doing a biopsy. It doesn't look normal they said. I asked if I had a lesion, and urology replied...well, I wouldn't call it a lesion. Soooo perturbed. I am going to be 61 in August. I found out about the mass when I was going over surgery rules. Calling my Oncologist tomorrow, not going to let them pull me around and hide stuff. Wishing you all good luck.

    • yaanaa
      yaanaa ruth34896

      Posted

      I'm crossing my fingers for you. Just so happens I had to tell you that you calling lichen sclerosis "Lichtenstein" made me lol so much... Very cute. Hope all is well in oncology.

  • vickylou
    vickylou Chris1230

    Posted

    Hi chris

    Having worked in obs and gyne, over the years I’ve seen all sorts.

    Any lump or change should be thoroughly investigated. If it were me, I’d be wanting my doctor to do a biopsy ASAP, and not fob me off with cream. If dr won’t investigate further, I’d happily pay for a gyne consultant to do this.

    I would be a nervous wreck if I had to wait and watch a lump grow or change in anyway. I’d want to know one way or another exactly what it is

  • Lima1986
    Lima1986 Chris1230

    Posted

    Hey Chris, 

    I’m 32 and am awaiting a biopsy to find out if I have LS. I related to the bump issue - I had a painful lump on my clit for like 4 months. My clit was really swollen and at one point expelled blood/pus. I worked with a fabulous pelvic PT named Liz Miracle in SF, California who thought it could be an accumulation of cells that got infected. My other Dr. prescribed Estrogen and I put that on for about 2 weeks. I was looking at the area to see what was going on, and a bunch of pus/blood came out. I squeezed and eventually a blob of greenish cells came out and the lump/swelling went away. 

    I’m not exactly back to normal bc it feels like my clit is smaller/less sensitive than usual but at least it’s better than the constant swelling! 

    There is a Dr. at Stanford that specializes in LS - Joanna Badger. She’s not the most warm and fuzzy, but she’s competent. Might be worth advocating with your insurance to go to someone who works with LS regularly. 

    • yaanaa
      yaanaa Lima1986

      Posted

      Hi,

      you are right about trying to see specialists; I can't follow all that you say but one thing stands out as totally wrong and I'm glad you're well after all. LS DOES NOT CAUSE PUS, infection does, and LS is NOT an infection. as for "cells" accumulating or coming out... just don't go back to those doctors. Something wrong with the medical vocabulary. You are also very young (which does not mean you couldn't have LS, just less likely). You might not know this, but LS is a rare condition, even more so with people under 50- In any case, letting a condition in which there is pus build up for 4 months tells you never to go to THAT doc ever again. Just remember forever that pus = infection. Infection is usually treated in 10 days with antibitotics. if the doc says otherwisw inquire more RIGHT AWAY. Still glad you're good, because bad localized infections can travel elsewhere... again PUS=INFECTION. Can't say it enough. Good luck with everything

  • karen23320
    karen23320 Chris1230

    Posted

    Hi All- I am newly diagnosed with LS a week ago and have been voraciously reading everything I can on it. My doctor is away for the next 6 weeks and left  ( nurse called to tell me diagnosis over the phone! ) with no prescription, no treatment discussion and I feel like I am on my own to handle this! It is so nice to know that I am not alone! I am 47 yrs. old, still get my period every 28 days and everything was fine up until 3 months ago.  I have had a lot pain after urination, skin very irritated- chalked it up to the middle- aged “ squirts” we women get after three kids and lifting heavy things, excess coughing or sneezing and just thought it was something I had to “ put up with”.  My clitoris has been hyper- sensitive, swollen and irritated, so  I bought panties with no seams because they touched in just the wrong place. After we had sex in late March ( no pain during except in clitoris during oral- sorry for being so descriptive), I had terrible burning pain for the next two weeks, coupled with my period, everything just felt raw.  After a few weeks it seemed to calm down and after mentioning to my husband that I was a lttle dry, and needed more forplay, we had sex again. No pain during, but I could not come and had terrible burning and pain again for weeks afterward. Made appt. with Gyno and she said it looked like Herpes and asked if hubby had a cold during oral sex?  Her cotton tipped swabs hurt like hell! Tested for everything including Herpes, Syphilis, etc. all negative. I’m not in the habit of looking “ down there”- raised strict Catholic, husband my only partner, I had to see “ what was going on down there”. Used a hand mirror and saw that interior Vulva was all white, several ulcerated “ lesions”, clitoris was swollen 2-3 times its size and looked split, bump down near vaginal opening, lesion on perenium- what a mess! Thought maybe I was allergic to scented tampons, so I bought organic corton tampons and panty liners. Seemed to calm down a bit and I was feeling hopeful. Got period again and was so inflamed and dry I couldn’t use the tampons! Burned like gasoline when I peed and pain made me want to throw up! Went back to Gyno for a follow up and she said it was worse than before! Might be vulvular cancer- Scheduled biopsy for  the NEXT DAY- now I’m freaking out! Took 6 biopsy samples, vulva like swiss cheese, so painful! Results came back 6 days later and I’ve been on my own since. Nothing from my Dr. So you guys are my source of info! I ordered emuaid cream after reading about it and it has helped with itching and pain, also statted on a low oxylate doet that is supposed to help. I noticed the pain was worse after wheat bread, peanut butter, lemonade, etc. I have been using a moisture barrier control ( soothe and cool) after every trip to the bathroom and that seems to help. Am worried about all the  things I have read about  steroid creams thinning the skin so much and leading to more tears, etc. Your thoughts? Also ordered another homeopathic cream from Perrins, I ‘m despwrate and will tey anything! Next Dr.  appt July 24!!!
    • yaanaa
      yaanaa karen23320

      Posted

      This advice will reach you late, in any case I hope it helps someone...

      People know the condition freaks women out, especially women of a certain age/background not educated about certain things or made shy by religion...

      few tips:

      -don't panic. Nothing major is going to happen overnight (I know how this sounds, when I first noticed I was off the wall, thought alot was going on daily, but a year later, not much changed, actually. The time you wait for an appointment won't affect anything)

      -if it cost money, you're being ROBBED. Homeopathy is a scam, there are others... (a few bucks for prescription steroid cream should last months, use less than more, as with any cortico steroid product)

      -if there is INTERNAL DRYNESS or PAIN... not from LS. Dryness is a fact of life once the hormones go down (the age is not set in stone, can be as young as in 30's)... Painful intercourse for reason OTHER than dryness -> go consult the gyno IN PERSON

      -beware of the internet: how many people REALLY have the medical background to aptly navigate through everything out there? this is not an insult but a fact, and when your health is on the line, mistrust is your friend. That includes recognizing one's knowledge limits. If doctors can make mistakes, imagine a non doctor!

      -lastly: it's NOT the end of the world. The biopsy is the worse part. You survived that, it's not cancer you'll be ok. 😃 we'd all like to be like we were in our prime but the truth is, we're aging... and some things will suck. It's important not to dramatize. The GOOD thing about aging is being better at keeping a cool head 😃

      I know a lot of you know all this and more! And I'm humbled by that. I just wish there would have been a little message like this when I first started looking frantically... CHEERS 😉

    • Lou10936
      Lou10936 yaanaa

      Posted

      Hi there. You helped me regain my calm so I thank you for that. I was 47 when it first came on. I would never have known, never felt a thing, my husband noticed an unnatural white patch of skin. It took 3 months between then and getting a biopsy. (It was Christmas time, wait times etc.) I was panicking then. After finally getting treatment it left me with a partial covering of my clitoris. Now I'm 59 and it has returned. This time I felt an irritation (burning soreness itchiness) . I looked and saw some bleeding coming from my labia and I notice fusing is starting there now. Oh, and my completely hooded clitoris. (didn't feel that!) I know I am being graphic but I know no other way but to say it like it is. I have to wait 5 more days to see my GP to get a referral. In the meantime I dug around and found a really old tube of Clobetasol prop and I used it. Not good I know but I needed to do something and it gave me instant relief. Not looking forward to another biopsy. I fainted last time. Again, I want to thank you for your message here. I will have to live with this. It sucks and as uncommon as this is, I feel better knowing I'm not alone. I can't believe I'm sharing all this because other than my husband, only 1 other person knows.But I felt compelled.

    • CASnewydd
      CASnewydd Lou10936

      Posted

      hi Lou

      I am in the same "place" as you.

      Have had this for about 15+ yrs

      All I am told to do is use the cream - clob.

      I am fused 1/2 way of my vagina & also all of clitoris.

      Things got much worse after my hysterectomy but I was past menopause too.

      All I can say is keep having yourself checked - I know how painful the biopsies are!

      Please keep in touch too!

    • yaanaa
      yaanaa Lou10936

      Posted

      I'm sorry and I empathize with you; and it's not strange at ALL that you feel compelled to talk about it. None of us should have to hide in shame. If it was, say, glaucoma we were having, we could speak out loud in front of anyone and get sympathy, not snears. But it's the world we live in. Remember, the world is flawed, not U 😃

  • Blueplum
    Blueplum Chris1230

    Posted

    Hi Chris just come across your post. How are you and the dreaded LS has the flare ups stopped? Also the fusing!!!
  • julia2017
    julia2017 Chris1230

    Posted

    I have identical issue. I'm in search of a surgeon or Specialist who can operate to correct clitoral phimosis. if you found someone please let me know.

    • anna62094
      anna62094 julia2017

      Posted

      hello i need the same thing. i have LS AND CLITORUS IS FUSED. pleaae need a cure or help

  • yaanaa
    yaanaa Chris1230

    Posted

    Reading you I see that you had both a lot of pros around you, a lot of self-knowledge, and, something I did not know could be the case, TIME to get "used to" (as one can hope to be anyways, not anything you'd want) the condition. I'm mid-40's and almost overnight (literally: within a month) my clitoris was already buried. It started by itching, which I inspected (and smelled) closely; then very fast there were ulcers (which I didn't call ulcers then but that got me a biopsy very fast). I had no way to stop it before it was very far gone.

    Why I came here, to read stories, is because I wonder how many have been left by their partner because of this... of course, I'm hearing other excuses, the poor thing unable to kill the little voice in his head telling him he's superficial and selfish: but he was SO MUCH NICER WHEN HE TOUGHT I HAD CANCER (and that it was probably operable, as I had cervix issues before.

    Maybe I shouldn't be here, because I'm full of anger, and this may throw yo guys off getting medical information... but I don't know a single person with anything comparable to deal with. I'm being treated as thought I wished for it. What's more, It's not so much that he can't get satisfactory intercourse from me... but the "but If I can;t give you pleasure, why bother?" that does not sit well with me. He NEVER gave me pleasure and knew it. But the news of more tissues possibly fusing, well, that was the end.

    To think this is a very educated man, very respectful of everyone, apparently sensitive, who only had one sex partner before me- and then none for over a decade- a man with no real physical interest in the world (smells, tastes, music, dance, no sea no ski nothing but know this POSSIBILITY of no intercourse IN A LONG WHILE and he's out the door? WHat of very "psysical", macho men! I can't be the only LS "dumpee"?

    I wish the symptoms had come at a slower rate. I, like many, believed in infection. Then the hell of the biopsie (ooouuucch, right?). I was not ready for emotional scaring.

    Best to all of you,

    Yaanaa

    • CASnewydd
      CASnewydd yaanaa

      Posted

      Oh Yanna I am so very sirry. I think we all go through this. My hubby was very sympathetic at 1st as he has had his problems too and if I am honest if we kept having proper sex when I was going thru menopause I dont think I woukd be discussing this but any way while he couldnt I could and vice versa.

      More off than on on his side.

      Now I cant at all he is raring to go - I have no interest. Not because I dont love him I do but not physically.

      I get angry often because I feel its part his fault but I really dont want to put blame on anyone.

      I just deel if he doesnt love me for who I am then - bye bye.

      I was once told by a woman GYN about "natural" meds & even though it cost me thru a pharmacist trained in "womens problems" they damn well worked! I was working then & could afford it but not now.

      All I can say is do some digging - there is also another way by a laser (its not as bad as it sounds) but also costs a LOT of money as treatment is over 4 months and a yearly booster. In Canada its called the Mona Lisa touch & is performed by a qualified GYN.

      Good luck to you.

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