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[Eddie]

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

[Elena]

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.

[Eddie]

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

[Elena]

it sounds more gynae than bowel, what is meant by retrograde bleeding? 

[Eddie]

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

[honeybun]

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

[Elena]

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.

[Eddie]

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

[JackyO]

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.

[Elena]

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.

[itsmetina]

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 .

[CLKD]

Well done Tina - you found the thread .......... you are not alone!   

[JackyO]

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

[Elena]

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.

[JackyO]

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