Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Melbury on January 16, 2012, 08:43:01 PM
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Just wondered if anyone else on the site suffers from this - feeling a bit down and alone :'(
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Sorry Melbury that you are feeling so down and alone. I dont have any answers for you im afraid but just wanted to say hello and im thinking of you. Im sure someone will be along who has experience or knowledge. Take care xxx
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I did a 'search' and there are 5 other references on the Forum.
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Sorry that you are feeling so low Melbury. I wonder if you have ever had a look at this site http://lichensclerosus.org/discuss/ It has a forum which is active - so many of them are old forums but this one was last posted on three hours ago. It may make you feel less alone.
Taz x
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Melbury
If you look on the Lichen Sclerosus site that Taz has posted there is a 'contact us' part.
If you want to - the form on there is to email the helpline to arrange a phone call or skype call.
I have met Fabia Brackenbury once who runs the helpline - she lives locally to me - she is a lovely person but does run the helpline on her own so the reason i think to make an arranged call.
Fabia has had lichen sclerosus herself - i don't have LS but talked to her about my vulva pain and it was a relief to speak to someone who understood and knew of all the options available.
Ghiro x
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Thanks Girls!
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Thank you all so much for the replies, greatly appreciated.
I have been on the Lichen Sclerosus site and posted a couple of times, but have to say I do prefer this site, it is so much friendlier :) They don't seem to get that many posting on the forums.
Feeling a bit more positive today, think a lot of it is that I am so worried about my OH, he has an appointment to see a surgeon on Friday and I just don't know how I will cope if he has to go through yet another operation. I knew this was coming before Christmas but just kept trying not to think about it.
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Sorry to hear about your hubby. I hope its not too serious.
Its funny when we worry and have to be strong for someone else our problems fade for a while. Still take care of yourself though as you dont want to be worse when the worry reduces.
Keep posting, there is always someone to have a chat with.
:hug:
Honeyb
x
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BIG HUGS TO YOU BOTH XXXXXXXXXXXXXX
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hi,I.m new to this site,but have visited several times.I too,have LS,diagnosed 12 years ago.It usually flares up 2/3 times a year,but as soon as I feel it coming on use the cream off dr. and stops it.I.m now in the height of the menapause,lack of sleep,night sweats,daytime hot flushes and sooo dry down below.I found I had to use my cream for Ls a lot more to see if it would ease it.But after a recent visit to dr,am now trying vagifem.I wasnt sure if the Ls flaring up more or if it was problems with the menapause.So far it seems to be better,but time will tell.
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It's trial and error which is so tiring, finding what suits each one of us when and how ::) .........
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SEEEEEEEEEEEEEEEE theres one already your not Billy No Mates
We are nice here cos we are all bloody daft as Basil Brush and we dont care
Plus we are women and we care for each other we may never see or meet but
You will get to kow people and dont firget you can use the PM message to talk privately to anyone on here
I have made 2 really good pals we talk every day send pictures bday cards Im even meeting one next year
So this site is not just meno matters its for all of us for what ever reason we need to chat 8) 8) 8) 8) 8) 8)
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IVE DONE IT TWICE IN 4 DAYS HEEYYYYYYYY
NO PAIN LOVELY JUBBELLIE YIPPEEEEEEEEEE
SORRY BIT OF DECORUM NEEDED I KNOW BUT
SEXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXY
THATS ME OR AS MUM USED TO SAY LUST IN THE DUST
\AND IT DIDNT HURT
THATS WHAT COMES FROM UPING THE DOSAGE
HOPE TO GOD IM OK TOMORROW BUT NO LIVE IN THE MOMENT
AND IT WAS Q NICE MOMENT HEHEHEHEHEHEHEHE
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When i started getting problems down below with menopause i got a little patch of lichen schlerosis on one of my vaginal lips, i got it checked at gynacology and they said if it wasn't bothering me (which its not) to just leave it.
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IVE DONE IT TWICE IN 4 DAYS HEEYYYYYYYY
NO PAIN LOVELY JUBBELLIE YIPPEEEEEEEEEE
SORRY BIT OF DECORUM NEEDED I KNOW BUT
SEXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXY
THATS ME OR AS MUM USED TO SAY LUST IN THE DUST
\AND IT DIDNT HURT
THATS WHAT COMES FROM UPING THE DOSAGE
HOPE TO GOD IM OK TOMORROW BUT NO LIVE IN THE MOMENT
AND IT WAS Q NICE MOMENT HEHEHEHEHEHEHEHE
Hi Suzi, what would we do without you on here to cheer us up and make us smile :) Please don't ever stop posting!
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hi,I.m new to this site,but have visited several times.I too,have LS,diagnosed 12 years ago.It usually flares up 2/3 times a year,but as soon as I feel it coming on use the cream off dr. and stops it.I.m now in the height of the menapause,lack of sleep,night sweats,daytime hot flushes and sooo dry down below.I found I had to use my cream for Ls a lot more to see if it would ease it.But after a recent visit to dr,am now trying vagifem.I wasnt sure if the Ls flaring up more or if it was problems with the menapause.So far it seems to be better,but time will tell.
Hello Mae, thank you for posting.
I am having another flare up and so will use the cream again for a few days. It is a bit scary isn't it using strong steroid cream down below? Sorry to hear that you have been suffering from it for 12 years. I was reading case histories on another site and was shocked that many people get LS in their 20's and 30's - must be absolutely terrible for them. So I am trying to have positive thoughts for a while.
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you.re right,it is scary using such a strong cream,but after 12 years I,ve learned to recognise when an attack is coming on and now use a milder cream.The only problem now,is with the menapause problems down below,its hard to tell,because symptoms are similar.I,ve recently tried vegifem but had to stop using it.Had bad problems with it ....very bad migraines with visual disturbances.I stopped using a week ago and now the soreness and itching has returned.There must be something else I can try?
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Ovestin and Ortho gynest see GP
I posted on here but on the wrong post
Im 99.9% certain Bobbles has Lichen its not a sex thing its not contag anyone can get it its auto imune
I looked cos i was worried about myself and up came piccies of everyone from babies onwards on diff parts of the body
Low and behold up comes 6 pictures of mens male parts and low and behold theres Bobbles LOu LOU(ok not his)
He was told he had Thrush for 18 bloody months he used cream he was away for 2 weeks so no sex it was still there
His scalp is covered under his hair with big red patches raw looking on the edges iswhite scaley skin
Hes gone on about dandruff used everythig he could think of and more cos it falls like snow horrificly bad its like powder
Last night I got the scalp massager and the skin that fell off his scalp was quite scarey the amount and then I looked at his scalp I could see huge red raw patches and its starting to get red on the back of his kneck
Hes not got Dandruff it looks exactly like the pictures of Lichen schill thingy
I think use the vagifem and cream on the outside thats what your doing yes?
Im sending humungus higs OK xxxxxxxxxxxx
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Are you sure that it's not Psoriasis Suzi?
Taz x
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Ovestin and Ortho gynest see GP
I posted on here but on the wrong post
Im 99.9% certain Bobbles has Lichen its not a sex thing its not contag anyone can get it its auto imune
I looked cos i was worried about myself and up came piccies of everyone from babies onwards on diff parts of the body
Low and behold up comes 6 pictures of mens male parts and low and behold theres Bobbles LOu LOU(ok not his)
He was told he had Thrush for 18 bloody months he used cream he was away for 2 weeks so no sex it was still there
His scalp is covered under his hair with big red patches raw looking on the edges iswhite scaley skin
Hes gone on about dandruff used everythig he could think of and more cos it falls like snow horrificly bad its like powder
Last night I got the scalp massager and the skin that fell off his scalp was quite scarey the amount and then I looked at his scalp I could see huge red raw patches and its starting to get red on the back of his kneck
Hes not got Dandruff it looks exactly like the pictures of Lichen schill thingy
I think use the vagifem and cream on the outside thats what your doing yes?
Im sending humungus higs OK xxxxxxxxxxxx
Hi Suzi,
Has Bobbles been to see a doctor about this? I agree with Taz, it does sound more like psoriasis.
I was taken off the Vagifem when I started on Oestrogel, but to be honest the Vagifem didn't stop the stinging feeling - it is not an issue of dryness, it is just a little patch of soreness that won't go away. I will have to keep using the steroid cream intermittently to keep the LS at bay and hope that eventually it just disappears - fingers crossed.
Hope you are well, keep nagging Bobbles to get himself sorted out, drag him to the docs if you have to!
Mel x
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you.re right,it is scary using such a strong cream,but after 12 years I,ve learned to recognise when an attack is coming on and now use a milder cream.The only problem now,is with the menapause problems down below,its hard to tell,because symptoms are similar.I,ve recently tried vegifem but had to stop using it.Had bad problems with it ....very bad migraines with visual disturbances.I stopped using a week ago and now the soreness and itching has returned.There must be something else I can try?
Sorry to hear that you are having problems and have had to stop using Vagifem. I was on it for about a year or so and thankfully never had any side effects, but then it didn't sort out the sore bit either :( I know it is difficult trying to work out exactly what is meno related and what isn't - to keep it simple, I tend to blame everything on the meno ::)
Hope you feel better soon, are you going back to the docs to try something else? Have you tried Oestrogel, I find that very good.
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I.m going to have to try something,will go back in a week or so,to try something else.Let the side effects of vf to die down first.
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Hello Melbury, Yes I am a fellow sufferer, I've just been diagnosed and am miserable too :'(
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Hi Melbury and Vera
I have Lichen Sclerosus too, diagnosed two and a half years ago, thought I had thrush that wasn't responding to anything. Bit depressing being told about it, but the Dermovate works well for me and I was advised to wash with Dermol lotion as anything perfumed stings. I get flare-ups, but not as bad as it was originally. Lately, I was worried that I was getting tighter and drier, but now think that's peri-meno mixed in. I try not to wear jeans much now and opt for soft cotton trousers when in house.
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Hi Melbury and Vera
I have Lichen Sclerosus too, diagnosed two and a half years ago, thought I had thrush that wasn't responding to anything. Bit depressing being told about it, but the Dermovate works well for me and I was advised to wash with Dermol lotion as anything perfumed stings. I get flare-ups, but not as bad as it was originally. Lately, I was worried that I was getting tighter and drier, but now think that's peri-meno mixed in. I try not to wear jeans much now and opt for soft cotton trousers when in house.
Hi flushtered,
Thanks for your reply, we have the same symptoms and I too am using Dermovate cream which has helped and also Dermol for washing, same as you though it's the inside that's the problem. Can you message me? Thanks Vera x
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Hi Vera
We can't do personal messages until we've got 100 posts. But I am also on the forum I've linked below, as itchyperson and you can do personal messages there : http://www.mdjunction.com/forums/lichen-planus-dis ...
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My gp thought I had this too and prescribed dermovate cream. I'm not convinced, I know I seem to get thrush every month? But I get white/blueish marks and very tender thin skin. Already on full hrt plus v/f.
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To me, the difference between the two is that with thrush it's inside I get it and with LS it's on the outside. I thought the LS was causing VA which I now think is due to peri-meno though.
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Mines is never inside, all always outside, itchy, tender, small amount discharge, not even very like cottage cheese, thin skin that splits easily, but i do get like a film, blueish tinge on my.......just realised were not in private lives.
Eddie. x
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Mines is never inside, all always outside, itchy, tender, small amount discharge, not even very like cottage cheese, thin skin that splits easily, but i do get like a film, blueish tinge on my.......just realised were not in private lives.
Eddie. x
It's OK Eddie, we are all women and all in the same boat sadly! :(
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I have never had thrush, but was diagnosed with LS a year ago - quite a shock.
No lovemaking for about 18 months now, just too scared it will be a painful disaster. Keep thinking I must really make an effort, but very nervous about it. :'(
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Hi Melbury
After having my lichen sclerosus diagnosed, I wanted to keep trying to make sure that I wasn't closing up and was more worried recently as more troubles in that area. Decided that being peri-meno was probably the cause though as the LS has been okay-ish for a while. Think I will need to make a GP appointment soon though to have both things checked out - I've only had my LS checked out once since initial treatment with dermovate 2 and a half years ago.
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I managed to get GP appointment for tomorrow as they had a cancellation, so should find out if she thinks my dryness probs are LS or peri-meno and hopefully get something to help. Also bit worried about sore bit at top of boob, don't know if I was just over zealous when checking myself and I've maybe just made it sore with pressure? Has anyone had similar? I'm quite bony at top of them anyway so difficult to tell if anything there, glad appointment is tomorrow -been a bit irritable because of it. :-\
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Dryness/tightness was Lichen Sclerosus again, got more Dermovate for it. Boob/chest discomfort was inflamed cartilege probably caused by man-flu last week, to take ibuprofen for it. Relieved about that, but bit fed up about the LS, thought it was waning - obviously not.
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I was recently buying some Yes products. I noticed a section on Lichen Sclerosus.
I have nothing to do with the company - just happy with their products and thought perhaps the section may be of interest to those suffering. All organic and 'everything nasty' free.
I am fortunate not to suffer from LS and so pleased! Hope the information helps.
Fx
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Thanks Firewalker50, will try something from them as don't like to use the steroid cream all the time.
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Those of you with LS may find it helpful to read this article. It is quite heavy to read all at once, but it has references, and it gives a view on an alternative or complementary way of treating LS. It gives all the background of the cause, which is the heavier bit and gives a view of how to treat the causes rather than the symptoms.
It also makes reference to vaginal dryness towards the end.
I guess if I was suffering so badly, I would be open to any information and potential help.
http://www.wholewoman.com/library/content/articles/LSRemedy.pdf
Fx
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Thanks again Firewalker50, I knew some of this but did not know about the use of Red Clover so have ordered some tea and tincture. Will let you know how I get on.
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Hello Ladies, I too have LS. I was diagnosed about 10 years ago when I was 37 and have managed the symptoms with dermovate & support from dermatology. It was quite a shock and the itching is intolerable. I must read the article from firewalker since the medical profession have labeled LS as auto immune since they don't know what causes it.
I understand that it's quite rare but there are a few of us here. I make sure I have regular check ups with GP and report any changes in appearance, texture of skin and so on. At the moment meno doesn't seem to be affecting LS too much thankfully though HRT alleviating some of the dryness. Big hugs to you all. xxxxx
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You've been coping with it for longer than me then Shrimpette, hug back x
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I have never had thrush, but was diagnosed with LS a year ago - quite a shock.
No lovemaking for about 18 months now, just too scared it will be a painful disaster. Keep thinking I must really make an effort, but very nervous about it. :'(
Melbury, Shrimpette, Vera and Eddie
When I was at dr this week, she said that it is best to keep having sex to keep the entrance to vagina stretched and prevent it from narrowing. She said to make it easier the best thing to do is for partner to use a condom with lubricant on it to prevent too much friction. I have also received yesyesyes lubricant that Firewalker50 recommended and will try this and I have also received red clover tea and tincture today, will try them from tomorrow as they are mentioned in the article Firewalker50 also posted on. Will update with results.
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Hi Flushtered. I hope your plan works - or at least shows signs of improvement soon.
FYI - I use the oil based first and then the water based. My ex-partner prefered the oil, so often he would use the oil and I would use the water based. I made sure I had plenty of the water based inside and for me at least it felt very natural actually. I found the individual applicators helpful for inserting it, and it can be inserted a little in advance if you don't like the thought of 'fiddling'. To be honest, the fiddling is minimal. I have not used it ever with a condom so cannot comment on that. I personally find a condom causes friction and dryness in me.
I would suggest you experiment with the combinations and timing.
Good luck. Let us know how it works out for you please.
Fx
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I was told at age 19 that I had Lichen Sclerosis. I was referred to the local GUM clinic by my stupid GP. I had never had sex and it was the worst place she could have sent me :(
My symptoms were pain and a build up of what I can only describe as White Stuff which, when I squeezed the area around my clit, would seep out. The pain would then subside.
The "doctor" at the GUM clinic thought at first I had some kind of genital warts (!!) and tried to freeze them off. The pain was excrutiating. I had to be held down by an assistant despite the fact that apparently I had been given twice the normal dose of anaesthetic.
I was then given this explanation of LS, sent away with steroid cream and told to come back if it got any worse. Well then what happened was that my inner labia disappeared! They fused with the outer labia. I used the cream very sparingly as I hated going to the GUM clinic so much. I would go for years eeking out my tube of steroid cream.
After I had my kids I moved to another area and attended a different GUM clinic. I went in a panic as I had read in a women's magazine that LS could lead to cancer. I had never been warned of this and I was really angry. The doctor there was patronizing and acted as if it was up to them, not me, what I knew about my own body. This was back in the 80s. He mustve felt guilty though as he later rang me and asked if I could attend the clinic on a day when the dermatologist was in attendance. Unfortunately I couldnt as we were in the process of moving house again.
I arrived at new GP and told her all about my LS and she referred me to local dermatologist who suggested that I didnt need the steroid cream, just to continue with aqueous cream and used Diprobase as a moisturiser. I have now been doing this for 18 years and it has worked fine although I do still have the original problem of the White Stuff. This stuff builds up underneath the hood of the clitoris and causes pressure and pain. I find the best thing is to have hot baths every day and massage the area so I dont get a build up of it. I found this via the web and my new partner who basically diagnosed me. After that I got referral to gynae who said she didnt think I had LS.
So all those years of ghastly attendance at the GUM clinic were for nothing. I was angry about this for a while and then I thought well there are so many things that are much worse for some people I need to put it behind me and move on.
SO, I have had no inner lips since age 20. I had no idea that this would happen to others upon reaching the meno, I feel almost normal now :)
Thanks for letting me vent about this. I never talk about it to friends. Only my ex husband and my current partner know the story.
Ellie
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Hi Ellie,
Feel free to vent anytime - I know what you mean about never talking to friends about it. What a time you've had with wrong diagnosis, it's a disgrace - they're meant to know these things and not second guess them. Can't say I've been bothered with white stuff, it's the infernal itch in bed at night that's the worst thing for me but the steroid cream does get rid of that. I think the red clover tincture is also helping, but can't drink the tea very often. My inner lips have all but disappeared too as well as my clitoris. The narrowing of the opening to my vagina has caused difficulties but lubrication is helping. I can't have too hot baths as it makes it itch worse. As you say though, there are worse things that people have to go through and on a scale of 1-10 on how managable it is for me with 1 being okay and 10 being very bad, I'd probably say I'd score it as 4.
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Thanks Flushtered
see this is what makes me think I dont actually have LS. I dont have your symtoms I have my own set of "lovely" unique ones. Basically I think that my clitoral hood is too tight. That's why the stretching helps but woe betide if I dont do it for a few days :(
Ellie
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I am just so very grateful that I do not have to experience or suffer LS in the way you have described it and the treatment some of you have had. I hope each of you finds something that makes it easier for you.
HUGS.
Fx
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Thanks Firewalker. Elena - I might be wrong, but I'm sure I've read about female circumcission before and think that the hood can be too tight, so they remove it to relieve the problem - makes me want to cross my legs thinking about it though!
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Hi Elena - LS can cause fusing of the clitoris and clitoral hood. This leads to a feeling that the hood is too tight so this could be the reason for your discomfort.
Taz x
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You are probably right Taz, it could well be that the hood is trying to fuse but I am not going to let it if I can help it. Apart from that and the fused inner lips I have no other symptoms of LS so who knows? I do worry about getting old and not being able to do the manipulation cos it really hurts if I dont keep on top of it.
Not sure female circumcision is just the removal of the hood. From all I have read over the years it's a lot more radical than that and has the most awful repercussions.
Ellie
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It's called FGM and does mean far more than removal of the hood. http://www.bbc.co.uk/health/physical_health/conditions/female_genital_mutilation.shtml Such a barbaric custom.
Taz x
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Eek! Sorry, could only just remember reading something about it a long time ago - thought it was just the hood. It's awful what some races put their women through.
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I didnt click the link as I know more about it than I wish to know already. What is scandalous is how many girls are sent to the UK from abroad to have this mutilation carried out because our govt is too spineless to prosecute, unlike France.
Ellie
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I remember reading about this in Cosmo in the late 70s. I was so shocked and horrified; I remember telling my Mum all about it. Poor woman; I was a late baby and a bit "radical" for her at times!
Bette x
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Sex was painful last night, even with lubrication and ached afterwards :'(
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So sorry to hear that Flushtered :(. It really eats at the heart of being a woman when you cant enjoy sex without some kind of unpleasant pain intruding.
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Thanks Elena, painful period here today :'( oh the joys of womanhood.....
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Just wanted to check with u's fellow sufferers of LS, my symptoms are the hood is closing up or my clit is disappearing, my labia is shrinking, where the skin fold in always splitting, as is the skin above my clit, a white film all over and when this is removed the skin is almost blue and shiny? I wondered if i need to have biopsies done to confirm it, have been given dermovate which i used until i felt better, but don't really want to keep using such a strong steroid to prevent it, it has now returned and i am using the cream again.
Eddie. x
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Hi Eddie
I never got biopsy, consultant knew what it was straight away. Sounds like you have all of the typical symptoms though and I wouldn't think that you'd be given dermovate unless dr was sure. Now that I know that menopause also shrinks 'bits', I'm not so worried about the dermovate causing thinner skin - think that gives the white film/blue, shiny look. When clit 'fuses' it disappears under a white thickened piece of skin and this thickening can occur at entrance of vagina too and has started happening to me causing 'tightness'. I'm hoping the dermovate will stop it getting any worse.
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Thanks Flustered. So do you use dermovate daily? I am also tender but red around the entrance but think that is prob meno. Eddie. x
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I use it daily if I need to, but when it's not bothering me too much I try not to. I had thought this latest bout was VA, but GP said no and that she could see the LS at the entrance.
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I use vagifem too, maybe i should stop it, my g.p. would love that, just to see if it makes any difference, i feel fine inside. It is so difficult to know the difference. Eddie. x
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I had to see my GP today for a prescription for Vagifem, she never gave me it, I mentioned I was sore again and she wanted to check. She said she def thinks it is LS and not meno. Referred me to Gynae. She also did swab for thrush again. If I have thrush again thats twice in as many months.
Eddie. X
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BOUNCE
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Do you mean BUMP? ;D ;D ;D
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Hands, knees etc.. We have a new member with a combination of issues so thought it might be useful for her to read ;)
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BOING ;D
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said Zebedee ::)
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Hello again all of you fellow LS sufferers :)
How is everyone doing?
I am not too bad, still have phases where I need to use the Locoid cream for a few days, but generally pretty OK.
Would still rather have my bits back and in good working order though ;)
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The Trial and Error of finding relief and treatment for any chronic condition can be tiring. Then there is the constant need to remind ourselves to manage the condition before it gets bad again ::)
GROUP :hug:
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Hi Mel. I have all the symptoms of Lichen sclerosus, but the biopsies were negative. There is a question over where they were taken from though.
So my diagnosis is Vulvodynia, however nothing is treating it.
Eddie. x
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Hey Eddie
Nice to see you back. At the risk of hijacking the topic for a second.....How are you and the family.
Honeyb
X
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Hi Honeybun. Nice to see you too. We are all a bit stressed just now, Youngest is still in and out of hospitals with pelvic pain, waiting for another ultrasound, but she is full of pain killers and other stuff because they wont admit her. Oldest has just moved into a nicer flat with the same boyfriend, we still don't like him.
Mum is good, YEAH...... Hubby was assaulted in town a few weeks back, so he is suffering bruised ribs and back pain.
So....... bet you're sorry you asked?
How are you and your family?
Eddie. x
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Sorry to hear that you have been having a bit of a time of it. Hope your hubby is recovering well. Have they still not found out what's causing your youngest all this pain. Poor soul.
We are all much the same. My baby is leaving home to live in halls. She got her keys today and moved some stuff in. The rest will go over the next two weeks or so. I am going to really miss her.
Mum.....well just the same as ever only older and more crabbit.
Same old same old.
Honeyb
X
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Oh, i couldn't bear my youngest leaving the nest! What a though. She was diagnosed with polycystic ovary syndrome, last summer, but the frequent urine infections have not stopped, or the pain. We were advised that pcos doesn't give you pain, so looks like something else has presented itself. My chance of being a grandparent is flying out the window. (joke)
Eddie. x
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Is it endometriosis Eddie?
My daughter has PCOS and also gets pelvic pain which has been diagnosed as IBS but i do have a friend whose 22 year old has endo. Horrible disease :(
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Hi Milliemoo. One doc said her symptoms leaned more towards endo. However our gp has got her on ibs treatments, prob just ruling it out.
Eddie. X
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She needs a laparoscopy to rule out endo. I was convinced I had it in my thirties but lap. ruled otherwise and I am STILL being treated for IBS in my 50s. I am on Mebeverine tablets now and they work quite well atm.
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Strange thing is, it has mostly settled. So def cyclic. She had a laparoscopy 18 months back, it showed retrograde bleeding. She has an ultrasound for a week today.
Eddie. C
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it sounds more gynae than bowel, what is meant by retrograde bleeding?
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From gp. Menstruation bleeding that travels the wrong way and ends up in the abdomen? She said not endometriosis, however I just looked it up and mayo clinic said that its the most likely cause of endo?
Eddie. X
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You must be worried Eddie. It's been going on for such a long time now. They don't seem to be able to get to the bottom of it.
Honeyb
X
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The problem I found is that bowel probs and menstrual probs inevitably impact on each other because they are both in the same general area. This makes it really difficult to know which one to check out first.
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I got her scan date wrong, 20th sept. so may call tomorrow and see if there have been any cancellations for this week. Or would it be better to see if the pain comes back for the scan? Maybe unbearable though.
Eddie. X
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I had a meltdown this week with LS. Diagnosed 3 years ago. I think the last time I posted here was when I thought I had an abscess on the clitoris. The problem was that the clitoral hood had fused and become infected.
Over the 3 years I have repeatedly used gentle pressure to squeeze out the white sebaceous matter to stop it building up. The GPs advice was to leave it alone but if it does become infected, there doesn't seem any better option. I have had 6 months of peace & quiet & not prodding it but then on Sunday it was feeling tender and it had a build up of nasty gunk:(. It all seems happier now.
But I'm not:(. Sometimes you just get sick to the back bloody teeth of one thing and another and there doesn't seem to be a solution to this. I think every now and again its good to have a howl:(. I have no other symptoms & feel desperately sorry for the ladies who have accompanied itching.
It has made me feel a bit more positive reading the earlier stories here and to know that I am not alone and see how other ladies manage the situation.
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Jacky this is exactly the problem I have had for the past 34 years or more. But NOBODY in the medical profession has been able to understand what I am talking about. I'm not surprised that GPs dont know, but you would think that gynaes and dermatologists would. Nope, in vain I have tried to explain what the problem is.
My solution is as follows:
in the bath just gently move clitoral area around in the water but putting a couple of fingers on the skin above it and moving the skin around in circle - best done after you've been soaking for a while in warm/hot water. Move it 50 times clockwise, then 50 times anti-clockwise. The gunk doesnt appear every time, it does depend when you last did it. I began by doing this every day but now it's every other day or sometimes every 3rd day. You have to adjust it to suit yourself.
This actually prevents the hood from fusing. I have often wondered whether I should ask for the hood to be stretched - do you think it would help matters or make them worse? It would have to be done under GA or spinal block.
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Hello my name is Tina and I've been diagnosed with the Lechin S... well I haven't officially but my doctor did a skin biopsy and is pretty sure I have it so I wanted to know how you're doing? He gave me rx for dermovate cream. Are you taking that? I feel sad and I know there are worse things but this has really taken it's toll on me :(.
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Well done Tina - you found the thread .......... you are not alone! :foryou:
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Milliemoo
What a relief not to feel like I'm the only person in the universe perched over a mirror squeezing myself:). Yes, I've seen the GP about 4 times & I end up feeling as though I'm imagining it. She obviously doesn't see it as a huge problem but I don't feel that this is a good way to manage the issue!
I am considering getting a private consultation with a gynaecologist to see if there is anything that can be done but will be in Australia soon until Christmas, so will have to be in the New Year. Yes, I suspect that surgery would be the only way to separate the fused area and stop this build up of material.
I will try your bath time routine. Does it make you sore?
Tina
I hope that having read the other posts, you feel a little more confidant that this is not the end of the world. That's how I felt. I know how you feel, it is a miserable situation.
At the second visit the GP gave me some betnovate to use sparingly, which I have only tried a couple of times as apart from the annoying sebaceous issue, I was not aware that I had a problem and have not had any irritation to deal with.
Jacky
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No, I honestly don't feel it is the end of the world, I was more concerned at your upset to be honest. I've had this since I was 19 or so, it's been a case of trial and error to get this far. DON'T do any more perching over a mirror and squeezing as that WILL make you sore. The bath routine will not make you sore as long as you do it gently. Believe me I know the urge to just squeeze and squeeze in order to get the stuff out but it isnt the answer. You have to go slowly and gently, if you don't get a result the first few times you will be the third day in a row I'm sure.
I'll be really interested to hear what the private gynae says as to whether or not stretching is the answer. I'm ok at the moment but I worry about when I get old and infirm and unable to do the squeezing thing!! All that build up is going to hurt :(
From what you say you haven't been referred to a dermatologist by your GP? She really should refer you if only for them to let you know about the very minor risk of LS leading to cancer. Just keep an eye on it, it is very rare but you should be made aware of it.
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No Milliemoo, I was trying to reply to u and Tina in one post:). She sounded more upset than me and I was very tearful and fed up with it:(
I think my clitoris is well and truly buried. There is a tiny pinprick hole in the seam of what used to be the labia and which are now fused together and this allows the built up material to exit when I squeeze.
No, I've only seen the GP and last year when I saw her she thought I had enough going on at the time - a possible MS diagnosis and my Mum died. I think I get really upset with anything extra because I'm still reeling about the MS situation.
Jacky
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Jacky0 and Milliemoo. Are you's both talking about a white almost waxy substance that gathers under the hood? And how much are you talking about?
Eddie. X
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I suspect that is what it is Eddie. Because the area is fused it must collect under the skin and has nowhere to go and then causes pressure & occasionally becomes infected. The amount is quite small but more when it's become infected and swollen but no more than the tip of my little finger at worst - so more than squeezing a spot but not copious amounts:(.
The GP said there are lots of little glands in the area that can get blocked.
I think her advice of leaving it alone has given me 6 months of respite and I have no idea what started it off this weekend - could just be build-up over the 6 months or tight trousers rubbing - I've been doing a lot of driving recently & trousers tend to bunch up in that region.
It's just such a depressing nuisance and I feel deformed:(
Jacky
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Oh Jacky, I am sorry you feel so bad about it. I used to feel as you do when I was younger, I guess I've had so long to get used to it and, to be honest, worse things have happened to me since so it's faded into the background.
I am intrigued that 6 months of leaving it alone has not led to a huge build up. If I leave it for a week there is a build up. I daren't leave it alone. When I was googling some years back I found some info from an american site where it was recommended to manoeuvre the area around GENTLY in warm water for ten minutes each day. I started off doing that but then realised that I didnt need to do it every day, or for ten minutes.
Tight trousers are an absolute no-no for me. I always wear loose ones. Also, I never wear tights.
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Oh Jacky, I am sorry you feel so bad about it. I used to feel as you do when I was younger, I guess I've had so long to get used to it and, to be honest, worse things have happened to me since so it's faded into the background. I think perhaps you have it worse than me as my main aim in preventing the build up, apart from not having pain or infection, is to keep the clitoris from becoming buried. I was warned about this by the dermatologist years ago. Can the GP not refer you to a gynae to see if there is any way your clitoris can be unburied? My inner and outer labia fused together back in my twenties but that's not a huge problem for me. Well, put it this way what you don't have you don't miss.
I am intrigued that 6 months of leaving it alone has not led to a huge build up. If I leave it for a week there is a build up. I daren't leave it alone. When I was googling some years back I found some info from an american site where it was recommended to manoeuvre the area around GENTLY in warm water for ten minutes each day. I started off doing that but then realised that I didnt need to do it every day, or for ten minutes.
Tight trousers are an absolute no-no for me. I always wear loose ones. Also, I never wear tights.
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Milliemoo
Thanks for your replies:). Yes, it does sound like my fusion needs some help. I will try & sort this in New Year. Really don't want to get into it a few weeks before I travel.
It's such an odd thing, I had no idea that it was happening until it swelled up 3 years ago when I thought I had an abscess. The only thing I can remeber is using some shower gel that made me very sore & a few weeks after that it started. It may be that the raw skin gave tissue a chance to fuse together:(. I suppose you get used to it and knowing that its such a common problem makes me feel better and that people live with it.
Jacky
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There used to be an online support group, I can check and post a link if anyone would be interested. Or can PM you if link is not allowed on here.
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I've found the lichen sclerosus.org one:). Is that it.
Jacky
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That looks like an international forum, the one I found was UK based but a quick search hasnt come up with it yet.
There is another forum on a site called Patient UK but I've just glanced at it.
Think the link to the other one is on my old laptop!
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Is there anything here? http://www.bssvd.org/index.php?option=com_content&view=article&id=29:lichen-sclerosus&catid=8:vulval-conditions&Itemid=8 It does seem as if the UK support group is for Lichen Planus and not Lichen Sclerosus.
Taz :-\
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That isnt the one I meant Taz; I wonder if it has packed up as it was only a small group.
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It's patient.uk - I've used it too because of problems. Feel free to pm me anyone.
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Thanks Lily
I'll check this out in a bit:)
Jacky
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I'm sure I put co.uk in my post but the co has disappeared ???
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:bounce: for new member