Bad day

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Hi all,

I've been having a lot of anxiety regarding my LS as I'm in my early 20's and keep asking myself why me and what is the rest of my life going to be like!

I have a question about sex. My doctor is actually encouraging me to have intercourse. He has given me topical estrogen cream - what exactly does this do? Strengthen and plump the skin so i don't tear? Im also thinking of getting vaginal dilators as I feel really small and tight around the opening. Without TMI I've always been quite small and tight around the opening (I've never given birth) so I'm not sure whether I'm being paranoid.

I am also experiencing vaginal dryness and sore/tight vaginal muscles. I don't think this is LS related as LS is an external problem? Could it simply be vaginal dryness? I'll be going to the gyno this week to see what's up with that - may be some hormonal imbalance going on.

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12 Replies

  • Posted

    I would be careful about having intercourse until you have tried some vaginal dilators, just to make sure you are feeling okay, and that there aren't any restrictions down there.  Its definitely worth doing, I did the same thing myself the other day and it felt fine.  I needed to know. 

    Because you are young its very important that you are seeing the right people early on, which usually means a Vulva clinic, some Doctors, Gynos,Dermatologists don't understand as much as we would like them to  do with regards to Lichen Schlerosus, and so its your very best interests to make sure that you have some good people around you.

     

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  • Posted

    Hi Jules1100  - I agree with Guppy007 about the importance of getting the right gynae advice. You are very young to have be having vaginal dryness and it's really important that you are able to address any difficulties you are having with sexual activity as soon as possible. I am fortunate that my LS seems to be worse round the urethra so unless I'm having a bad 'flare up' then intercourse and clitoral activity are usually fine.

    I do urge you to press for the right advice and help - don't be afraid to badger your GP about this if you haven't yet been referred to gynae clinic. 

    Hope you can soon turn a corner on this. 

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  • Posted

    Jules, I too was given the suggestion that I should have kept doing intercourse.  The reason my gyno told me this was that it would have kept the opening to the vagina open, instead of closing all together.  Hindsight is easy and I don't know whether it really would have helped, and better not thinking of the excrusiating pain I would have been in.  

    A better solution to the narrowing or possible closing is dilation with lots of lubricant.  Something I am doing at the moment, with the help of a dilation set.  It indeed makes a difference in a variety of ways.  The hormone replacement is to keep the skin more flexible, is what I understood.  

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  • Posted

    Vulvanydia is a vaginal condition as oposed to a vuval condition-

    Dryness is unusual in young women - perhaps you could ask yourself the following questions

    What are your hormone levels like - have you had a blood test to find out - you could ask for this to be done - depending on your gp.

    Are you on The Pill? perhaps you could ask for  a full blood profile.

    Has anyone else inn you family got LS?

    Do you have any other auto immune conditins- one often means another one.

    If your partner is gentle and not too well endowed then as Hanny says it could be better than dilators

    Look at your undercarriage  and see what it is like

    One thing is certain stressing will not help  and could probably make matters worse

    There is a dilator/ and exercise  that will help muscle spasm in intercourse, have you looked at the vuvlonydia societies website - it may help you

    As to the question why me -? who knows -probably in our genes, and our reaction to stressors in our lives!

    Good Luck

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    • Posted

      Hi Sue,

      Would like to make a small correction - in my writing I hopefully expressed that dilation is of help.  Having intercourse requires two people being very, very gentle.  With the dilation tool you yourself are in control.  

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  • Posted

    Thanks so much for the replies. I have made an appointment with a gyno who specialises in vulva disorders. I'm seeing her next month. I think it might be wise getting a second opinion. As a few of you mentioned being young it's important to get correct treatment and address any other concerns I may have.

    Hanny I think the dilators are a good idea. I may purchase a set. I've just ordered some Yes lubricant so I'm hoping that will be helpful in easing any discomfort.

    Suedm you mention some good points. I look at my undercarriage too much these days! I went from never looking to scrutinizing the area. What I do notice is sometimes the entrance to my vagina and urethra appears pale and dry. To me it looks like urogenital atrophy but at my age!? Can't be. Hoping my appt with the new doctor can provide some answers! You mentioned vulvodynia is a vaginal condition - I thought it was only an external problem affecting the vulva. I will check out that website though. Thanks

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  • Posted

    Hi,

    I know exactly how you feel, I have been like this all through my 20's am now 38 and am finally being treated for LS after being fobbed off by doctors that I was just small and dry and to use KY Jelly (worst thing ever, really stings) I have always torn from sex with all my partners :-( and it's got to the point now my vagina goes into spasms and clamps down so I can't do anything if I wanted to.  I have bought some dilators and am starting to make some progress, although if i miss a night or two I have to go back down and work my way up. I have never been offered Estrogen cream although last year I was prescribed a course of  Estrogen pessaries called Vagifem really started to help and plump things up but i suffered bad headaches so the doctor stopped it. Let me know how you get on with the cream, I've had my hormones tested and they have come back fine but I have always felt I was having a hormonal imbalance. Let me know how you get on :-)

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    • Posted

      Reading your msg made me feel somewhat at ease. Thanks. Ive never been so miserable but keep trying to remind myself there are worse things in life!

      The estrogen I'm taking is only applied externally to the vulva skin and just slightly inside the opening. I've been on it for a few days now so still early to see any improvement. I've been told it takes a while to see and feel noticeable improvement. I'm thinking I need something for my vagina as well though.

      Did you feel soreness and tightness even when not having intercourse? Trying to work out whether I'm feeling this from the LS or if if there's a secondary problem going on with it.

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    • Posted

      I'm glad my message made you feel a bit better, I too have days when I could scream and shout about how unfair this all is.

      for the last 3 months I have been using the following (prescribed by the dermatologist) I have Oilatum shower gel fragrance free to wash with and then Hydromol Ointment to apply after bath.showers and every wee :-)

      This has helped tremendously with the normal soreness/tightness/dryness I was feeling all the time, are you using anything to wash with etc?

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  • Posted

    Hi Jules! My case seems very similar to yours, I am 26 and was diagnosed with LSE a month ago through a biopsy..I dont have any itching or white patches but the skin in the vestibular area at the entry of the vagina, where the problem is, is very red and splits when having sex (at least like the 5 times that I tried a couple of years ago), how does your skin look like? I am so afraid of the next symptoms.. Also I have always experienced vaginal dryness and tight muscles, at first I thought I had some psychological condition and the tightness caused the spliting when having sex, I guess I had atrophied skin all alone and it got worst after some acid because of HPV.

    I understand you perfectly, besides having to watch the terrible effects in your vagina, sex is such a huge issue, knowing the complication of finding a partner that will accept my condition is like holding on tu an ilusion, we all know how man are like and how they feel about sex...

    I hope someone finds a final cure on the following years.

     

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  • Posted

    Jules, hope your new doctor is more helpful..  I have found that coconut oil is very helpful as a lubricant and protectorate, so please give it a try to keep the dryness under control.  I am glad you are proactive with things now and hope it gets better for you.  Try to keep a grateful and positive outlook on things and put the negative thoughts on the backburner.  You are improving and you are doing it well.  
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