LS and IBS?

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Hi

I have been diagnoised with LS for about 3 years, im now 28. I actually think I had LS as a child my gp thought it was re accuring thrush which stopped at pubiety but came back when I started getting IBS symptoms at about 20.

I saw a gyn and dermo lady who had an intrest in LS the gyn said do cone stretching as im young and still quite soft down then. The dermo gave me dermovate ans eperderm for mosituring the area. 

I had to use dermovate for 3 months solid twice a day then down to once a day for a month then every other day. Whilst doing this i had regular check ups with the dermo doctor.

She signed me out of the clinic a year ago as she was happy with my management.

I am however trying to get back in as I finally feel ok about myself and my body to have sex, which ive torn both times on the upper fussed part. 

At the moment she is fobbing me off with just seeing a g.p.

I wondered has anyone else got IBS and LS together? How do you manage them?

How have you delt with tears and over coming them to have comfortable sex again? I dont want to go back to a sexless life!

I should of seen a doctor sooner but I thought it was just thrush again and again and I was really shy about it.

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  • Posted

    Hi,

    I have also been being treated for LS (although it has never been officially diagnosed - as they said that would need a biopsy).  I don't know for sure that I have LS but I was put on a similar treatment to you - dermovate and epaderm.  I'm the same age as you and think I have had symptoms for just over two years, though I often wonder if the thrush i thought I was experiencing in the past was actually this skin problem.  I also have IBS and I think it definitely makes it harder to keep the symptoms at bay - because if you're like me you probably have to go to the toilet more often which can aggravate the skin down there.  I was told to always use an emollient before I go to the toilet (I use something called diprobase which is like e45) and just keep some in your hand bag to use before you go and that seems to protect it.

    Obviously the best thing you could try and do is try and get to the bottom (excuse the pun) of your IBS problems - try and change diet or think about things you could try and change to manage your stress? I have actually had some cognitive behavioural therapy to help manage anxiety as was going through a bit of a tough time and made my IBS a lot worse.  Obviously, I understand it's a lot easier said than done but just try and think of small changes that you could try and make to make life less stressful!

    As for the sex, I'm afraid I am also working on that at the moment - it's too painful but it helps if you have an understanding partner- it doesn't always have to be penetrative though so don't put pressure on yourself!

    Could I ask you what clinic you went to - it sounds quite good that you were seen regularly to begin with? I am near London in the UK and I have been bounced around from GPs (who told me to go away and just grin and bear the painful sex - or it's reccurant thrush!) to small women's clinics who have seen me every 6 months and have now told me I need to see a dermatologist/specialist as it is not something they can help me with!

    It's really frustrating waiting months and months to only be told they can't treat me! 

    As horrible this problem is, it's nice to hear from someone who seems to be going through the same issues!

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    • Posted

      Hi Tilly

      Thanks for sharing your experiances :-) the clinic I went too is in London ita part od Kings College Hospital. The doctor/derm who I saw is Dr Walsh, its a clinic that runs once a month only on Wednesday aftetnoon.

      I had a good g.p then who specfically asked for me to see her.

      I am however struggling to get back in it and shes being a little unhelpful about it.

      Oddly no one has ever told me to use a protective cream pre going to the loo! Ill look into that as Ive seen it mentioned a few times on here.

      My IBS has been such a huge problem in my life, it took well over a year to get it diagnoised at a horrible hospital. Dont ever go to Mayday in Croydon! I fibd the IBS is really hard to manage ive tried all sorts of diets, i am about to re-try cutting out gluten/wheat. It is quite expensive though. I already do lactose free stuff for diary.

      I am actually having CBT for anxiety and other issues we started last Monday. I think my IBS can play up depending on my cycle also woo lol.

      Do you take anything for your IBS? The only thing that ever worked for me is peppermint capsules.

      Id try and get into the clinic though request your g.p to send you there.

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    • Posted

      Thanks for letting me know - I really want to find a specialist who will tell me exactly what is wrong and see me regularly so I can feel like some progress is being made!

      That's really good that you are having CBT, I found it really really helpful - make sure you do the 'homework' that they set you and allow yourself time to work out your triggers/personal issues! I think just generally working on your wellbeing can have a huge impact on how your body reacts to things. I also have taken colpermin (the peppermint capsules) and think they help but havent ever taken them on a regular basis - just when I feel particularly bad with the IBS. Diet is a tricky one as I guess people are sensitive to different things.  I LOVE bread but know that it's not that great for my sensitive tummy so I try and limit it, or try less gluten (spelt or rye bread) -I would be miserable if I gave it up completely! I've read things about having too much fibre (fresh fruit and veg) can make flare ups worse which goes against all the health advice! But fruit is high in fibre and sugar so I try and limit that and eat lots of green leafy veg instead. Things like cereals high in wheat I know to definately avoid - but porridge is always good for me and eggs are great.  I hadn't thought about cutting out lactose - I tend to drink soya milk but cheese is a bit of a weakness.  I think it must be a bit of a balance in terms of choosing foods that make you happy and avoiding those that definately cause flare ups.

      I'd really recommend the protective cream because if you have to go to the loo regularly it won't allow anything to heal so it really helps by keeping it covered - again try a few emollients - I found the diprobase best for me, others made me sore.

      I have a secondary problem of tensing up when even the thought of sex comes into play so I was recommended lidocaine which numbs the skin.  The dermatologist I saw gave me 5% strength in an ointment and a 10% strength in a liquid spray.  I am in two minds as to whether it is a good reccomendation or not because it stings like crazy to put on, eventually it numbs but it is a bit of a mental battle to be causing yourself more pain. The idea was that it re-set your nerve endings (which with LS or any painful condition might have made you hyper sensitive to pain so the lidocaine numbs it and resets the nerves somehow?!) 

      I would like to tell you more about the lidocaine but not sure I'm comfortable sharing on this site so let me know if you want to email privately! Or see if you can speak to your gp or dermatologist about it.

      I was supposed to be being referred to a physio specialist too to help relax the muscles but still waiting (after about 6 months!)

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    • Posted

      Don't exchange emails  but use the little envelope by her name - you will see it by the star - it is a private message and is only seen by you and her

      Sue

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  • Posted

    I do sympathise with you about being discharged into youur GP's care. It is all about the NHS cuts not your treatment- sadly

    Try getting a private appointment - phone up Dr Walsh's secretary on the normal clinic day - they often work part time for the consultants and may not be in the office on other days - They often start work at 8am ish and so it is easier to speak to them Tell her of your problems and ask whether it is possible to be put on the list to be seen. IF she says not pos then ask the cost of a private appointment- and how soon could you be seen

    I had OBS when i was about your age, much was to do with my eating - or non eating habits. Try a bland diet at regular intervals. DO NOT STRAIN! try massaging your tummy from left to right below the tummy button- but be gentle

    Talk to your partner about the situation - he will probably be horrified to think he causes you damage/ trauma. Use a LOT of lubrication - my gynae suggested astroglyde - but others on this site will use other lubricants with fewer chenicals

    I imagine you will have seen previous threads which suggest you wear loose clothing - ie no tight trouser- go commando if necessary  NO soaps smellies in the bath - Check out the Dr Goldsteins talk - Alan the moderator will  know. This is one of the very few links that are allowed by this site. A lot of issues are explained

    Do read back some of the threads most are sensible - adult conversation - others tend to be rather chatty and not really helpful. Dilators are very useful - more fun is the dildo from a well known sex shop -It was suggested to a group of us who had a support group in Brum -  the sex therapist organised a trip for us - the staff were very nice and helpful

    Sue

    Emis Moderator comment: the discussion with the link to Dr Goldstein's talk is below. Any user can post the link as below in other discussions rather than posting the direct link to the talk. This will save it going for moderation and getting delayed.

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

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    • Posted

      Hi Sue

      Thanks, my app with Dr Walsh is her sayng to the app booking stuff she wont see me

      The appointment chap is contacting her again to re-request I be seen.

      Im looking at the talk tonight, from reading this forum mine seems to be relatively under control. My main thing now is tearing from sex.

      I dont have a partner as such ive just started seeing a new guy so feel a little nervous discussing just yet. I think I torn as we had sex 4 times in one night and two where long sessions. Lol I had to make up for 6 years of none!

      I had thought a dildo would at least be more well fun for me. There is a great womens only sex shop here I planned to go Saturday. That has to be a better way to get myself stretching. Also living in a sharef house with shared bathroom the cones are a little harder to use.....

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