Clitoral and Labial Fusing
Posted , 25 users are following.
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
julia2017 Chris1230
Posted
I had symptoms early but did not recognize them as anything other than an age related, .....and career related loss of sex drive. (I work with abused children)..... and the itching and pain with sex made me DREAD it. Unfortunately it came at exactly the same time I remarried. I let him know my libido was getting very faint and he seemed like it was okay. but now I know he thought he was going to "fix" that, and me. He wont fricking leave me alone. its everyday some sexual innuendo and trying to get some. I give in once a week. it's all I can handle. I would welcome him to just go impotent but that doesn't seem on the horizon at all. This same man is fun, kind, and generous and loves his children and me etc.... no complaints. I live in guilt because I hate sex now. All it is, is painful. and he waits but reluctantly.
If your guy left you I would count it as a blessing. but that's me and from the perspective of tired of being on guard to the sexual advances constantly. Dodge that bullet and be open to the next about your LS. Good luck to you darling. julia2017
julia2017
Posted
this reply was meant for Yaana. this thread is confused with so many ads in between. sorry.
yaanaa julia2017
Posted
Hi!
Thanks for letting me know I'm not alone. In this case, we've been togheter 6- is that 7 now?- years and a lot downwards, large part on account of sex. It was ALWAYS painful, never orgasmic, and now LS??? SO he knew about menopause from the start (got it in my 30's) but men just don't get it. Not wanting it is about something else, something wrong inside your HEAD not your privates. They can't imagine not wanting it so we must be punishing them. In any case, this one, at 45, is not ready for the type of life being with me means. He's not gone, as we live together and he's just changed jobs (uncertain financials) but he think about every day and mentions often enough. It's slow couple death by female aging... with a huge serving of LS. I know what you mean, if I could only get a man with no libido! Hey, blue pill guys, you got NO IDEA the market out there for the likes of you! Think of the quality gals you'd get by NOT taking that idiotic invention (could they not alleviate LS?)
Jokes aside, I'm sore both outside and inside. I really feel like I'm a discarded doll, not just by that man, but I figure, any man at all. I was always thought of as "sexy", well here's the mystery behind the woman! Not so hot. Anyways many thanks for taking the time to hear me out. Good luck with your man, your life, everything 😃 Yaanaa
CASnewydd yaanaa
Posted
hi. I havent posted in a long time
My "condition" is worse than ever - everything shrinking or almost gone. It is being swallowed up. cant even sleep now because how I am down "there" interferes with it
Was on anxiety med but new dr took me off them grrr. I feel that I am also getting depressed & having no sleep is aiding this. The new GYN I have been seeing us just keep on the steroid or, for those of you who are interested & can afford it, there is a new laser treatment - cost around $5000 for 6 x 1 week treatment & occasional booster. This is called The Mona Lisa Touch. You can google it. Apart from that she doesnt want to know.
So I have a dr who doesnt want to prescribe anything & the same with GYN. Drs are very hard to come by where I live. Take care all.
SnappyCat CASnewydd
Posted
I'm sorry CAS...the worst part about this disease is feeling so alone about it. At least, for me, it's not something I chat with my pals about over coffee. My husband is my sole support.
Do you have any choice in Docs...or are you stuck with this one? I'm not even sure how I'd go about finding someone else...Maybe call around and ask. I find that while my GYN is very receptive to ideas from literature, not so much from me. But, fortunately, my DERM is younger and has much more current info and ideas...and she talks to the GYN. So, maybe calling around...maybe for a Dermatologist.
kathryn08650 CASnewydd
Posted
HI there,
I just joined this group because i am fearing that my clit is fusing with the hood. I have been reading a lot about LS and joined the facebook group recently renamed "Sharing Is Caring" They have a lot of information about LS and I am currently on the Borax program: bathing in it and drinking a very small amount of it mixed in water - I flavor it with lemon juice (which I read is not good for this condition, but I still drink it) and stevia. This makes the Borax drink better for me. Others say that they cannot taste it at all, but I somehow (maybe it's just in my mind) can.
Anyway, I just started using a cotton pad soaked with the Borax concentrate and I will be massaging it. I read on the thread that this has helped many others with this issue and it gets a quick result. The pad is on me now, so if it un-fuses as I type this, I will let you know.
Okay, I just checked it and used a q-tip to push around down there. I am not sure what I did. I might have just caused another fissure, or I might have opened up something that fused. I think I need to go to the FB group and ask someone who has had experience doing this.
Basically, I wanted to write to you to let you know about a Dr. Coyle has a Tulip procedure that is a one day only treatment costs around $2,500. I plan on doing this this summer when my job ends.
Debbz1989 Chris1230
Posted
Christine - I feel your pain. The same thing happened to me - my clitoris looked like it was disappearing and I could barely see it anymore... doctor told me the hood is fused to the clitoris. I started using the clobetasol a month ago... and my doctor just prescribed me Premarin to use as well because I'm having a really hard time with this fusion! Mentally its sooo upsetting. I want it to go back to normal - like - YESTERDAY. I was hoping to see SOME kind of change by now (if the clob was going to help "unfuse"), but it looks the same. I'm praying the Premarin helps to "unfuse" it... if not - I'm going to ask my doctor about surgery options. I'm not very patient with this... I want it to happen now... so I get discouraged when I look at it and see no change. 😦
I've looked for success stories on hormone creams or the clobetasol "unfusing" the hood from the clitoris... but I can't seem to find anything. SO frustrating.
yaanaa Chris1230
Posted
Hi,
I can't say much about "de-fusing", let us know if you find anything? But one maybe "good: point is that while skin wight be fusing, it it also made thinner (so GYN says) by the steroid cream... so there might be a less direct access to your clitoris, but it might get more sensitive as this layer of skin gets thinner. I would not call this reversal, but it's not bad news, right? hang in there 😃
CASnewydd Chris1230
Posted
Hello everyone.
look after 20 yrs of going through this, the BEST "medicine" I have ever come across is a more natural, plant based one. The creams I used for managing missing "hormones" were specially made by a pharmacist trained in this alternative medicine. I was referred to this by a GYN who cared about what us women go through with LS.
Let me tell you IT WORKED!
Unfortunately, it cost be about $150, but each (3) item lasted 3 months well worth the cost - but I was working and could afford it at the time. I have since moved away & am now on a low income so am not able to do this now.
Please look into it. The pharmacist must take a 2 yr course or more to be able to prescribe this alternative medicine and YES the prescription has to come from yr GYN. The pharmacist should talk to you about your LS condition and adjust doses accordingly. Good luck!
kathryn08650 CASnewydd
Posted
Is there a name for this "medicine?" I would like to inquire if any pharmacists in my area have taken the course to prescribe it. Please let us know. Thank you.
CASnewydd kathryn08650
Posted
I live in Southern Ontario Canada - would you be anywhere close to the area?
kathryn08650 CASnewydd
Posted
I live in Pasadena, CA. Our pharmacists probably cannot prescribe it. I can ask a friend who is a pharmacist on the east coast when I visit there later in the year.
I might still be able to find the medicine if you provide the name.
CASnewydd kathryn08650
Posted
I really dont know the "name" as it was a generic plant based cream(s)
Had 1 for estrogen (inserted into vagina) progesterone that was rubbed into skin.
The pharmacist had 2 yrs extra training to make these creams.
I think you would have to look for soneone who is trained in plant based medicine
sorry I want to help further as it was 10 yrs ago ir more that I used them and have now moved.
good lyck!
angie2018 Chris1230
Posted
Hi Christine
Hope you're well. I know it's been a couple of years but I've only just come across your post. I've got LS, I was diagnosed a long time ago after many years of suffering and being fobbed off by the doctors.It was quite severe by the time I got referred to a consultant at the hospital.
My Labia had fused and the clitoral hood had sealed. My skin was wafer thin and tore very easily. With the help of clobetesol I got on top of the tearing however the other 2 issues didn't change. I asked the consultant about reopening the hood. Although she had carried out the surgery a few times, success rates were very very poor and it was an extremely painful thing to go through with. I was only in my 30's at the time so wanted to give it a go. It is something I wish I hadn't of done. It was excruciating and resealed very quickly.
Not sure if this happens to everybody but wanted to let you know that before the hood sealed the first time around, it had become hard, almost like a thick scab. Because I had daily tears and was constantly sore, I didn't realise it was the hood opening sealing over.
Today, I try to keep on top of it (I rub coconut oil into the entire area every night (something I read on line years ago)) I only have to use the clob once or twice a month. I rarely tear now but bruise very easily. I obviously still have a clitoris but the skin in front of it has thickened over time making it very difficult sometimes to find, the consultant suggested buying some sex toys 🤣 For any ladies in the same boat as me, this was fantastic advice and I recommend a wand!
I came on here today hoping to find some information. I was told by my consultant that LS can attack the vagina opening and try to seal that too, however I can't remember whether she said it could affect the vagina internally. Sex has started to become painful. Could this be due to LS? Anyone else suffering like this?
Many thanks.
Debbz1989 angie2018
Posted
Hi Angie - I've also heard that LS can cause the vaginal opening to tighten up or seal up... I think it's scar tissue? (I may be wrong.) But I hope it doesn't affect the inside, too. 😦 I'm interested in what people answer to your question because I've noticed that every time I have sex - it feels like I'm "tighter"... and I wonder if that's the LS!? Or if it's just because my male friend is "large." 😃 But seriously - it worries me that I may be shrinking or something inside! 😦
And thank you for sharing your experience about having your hood surgically unfused from your clitoris. I'm 48 and have been thinking about having mine surgically unfused... but I'm afraid. Having four biopsies down there was excruciating enough... I can't imagine what surgery on my clitoral hood would be like! So that's what's kept me from doing it... THAT - and the thought of it fusing back on there after surgery. 😕
I wish there was a way to unfuse and keep it that way. 😕 sigh
karen23320 Debbz1989
Posted
hi Debbz1989- I was diagnosed with LS June '18. By adding auto immune boosting supplements, cutting out sugar and most grains, and wearing 100 % cotton panties ( using organic cotton tampons and pantry liners), it is pretty much under control.
I had lost alot of sensation in my clitoris and my orgasms had gone from a 9/10 to a 1/2. We hv always had an active sex life and this was very hard.
The steroid use will soften the scar tissue, but will NOT unfuse what is fused. I decided to have the clitoral " unfusing" surgery Nov 1, 2019. The surgery was not bad ( much less pain than my biopsies). I had to apply clob and a numbing cream to the separated stitched sides until they healed, and I apply now 3x a week to prevent refusing .
My orgasms are now a 5/6, which is better than it was. It cost about $3000 with my deductible, and I feel it was worth it for my state of mind and to assure myself I was willing to do whatever I could to improve our situation.
I do not hv a flare unless I eat sugar and the added bonus is I've lost 32 lbs. without sugar and low carbs.
I had constipation from the surgery, took about 11 days to poop freely, but very little pain from the actual surgery. I had it Friday and was back to work by Wed.
Hope this helps with your decision. Good luck!!
Debbz1989 karen23320
Posted
Thanks so much for sharing Karen! 😃 That's great news! I'm going to talk to my doctor about it. I really feel I need to do something about this. 😕
yaanaa karen23320
Posted
Thanks (in the name of those it will help)... But that ammount of money is just impossible to find (those who don't have coverage are the worse off). For example thinking 3000 CAD$ that's 1/5 my annual income (much more in USD$!!!
I guess you have to take age (how long will this extend your particular sex life?) and how important sex is to YOU as well. Many of us worry about our BFs/Husbands's reactions... Also, to remember: LS HAS NO CURE. Despite surgery, it'll still be there in some shape in form FOREVER. I'm still glad you shed a light on this option, thanks for the info. YS
kathryn08650 yaanaa
Posted
I don't want to think that this is a "forever" situation. I have talked to people in the facebook group who have experienced full remission. I am waiting to hear back from a woman who got the TULIP procedure. I researched current studies done on this and found that a Doctor in Boston will be accepting participants in a study using a similar laser procedure that has had great results. (Maybe you can write a compelling letter to an airline that will provide you with a free flight - or crowdsource the funding for it.) Personally, I was going to do it, but since I am completely off Clob, just soaking for 20 minutes in my sitz baths every other day and drinking a very diluted Borax water. The itching is GONE and the lesions and fissures have lessened dramatically. I believe I am getting better.
I have not had regular intercourse since I started having pain in 2012 - I thought the pain was just due to menopause (I was 50 at the time.) I was not happy in my relationship aside from this issue and got rid of the deadbeat. I have been very happy alone, and without sex - but recently my doctor told me that masturbation was necessary for healing. I had been trying to do this in the past. It seemed to take forever for the lamest of orgasms. Vibrators did not help much. One of the ladies on the fb group suggested a "sucking vibrator". I had never heard of that one before. I ordered one on Amazon made by Bombex (under $30) and had the mother of all orgasms! Holy hell - after eight years of nothing, (I will not go into detail.)
I think the device is made in china as the language on the enclosed instructions is a bit comical. They even have "Your Trusted Life Partner" written on the box. Maybe my attitude towards sex will be different now. To quote another line from the instructions, "But who knows wat would happen could delight and surprise you."