Raw Sore & Painful

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I was diagnosed with LS about 3-4 years ago. However I have many other health problems largely to do with the immue system. I have been going through really bad flare up with LS and notice that the vulva is completely red and raw, and its very painful. I went to my GP last week feeling a bit of a fraud as it had improved since making my appointment however when she looked she said "oh thats not good I shall refer you back to the hospital, she asked if I was ever followed up after diagnosis and basically I was diagnosed and discharged at the same time.

I use Beneovate and also Cetrabren but sometimes even that is so painful. I do feel its also spread to the anal area which the GP said its going in that direction but not too bad at the moment just near the edge of the anus.

My question is should we be followed up by anyone, I was always moaning to my last GP ( whose looked after me for 34 years and reired last year) about the flare ups but as I have so many other health issues that seemed to be something that always lower on my list of priorities.  I feel at least when I mentioned it to the new lady GP she said she'll look at it and her reacion was quite she was quite shocked I thought it was quite good, which to me it was that day! She also commeted that LS is one disease she prays she never gets, so she clearly understands how it can affect people who have it which I found quite comforting.

How do others in this forum manage with so much soreness and pain, do many other people in this forum suffer with inflammatory arthirtus or sjorgrens syndrome to which I also suffer along with chronic pain ME (14years dx) and fibroymyalgia (33 years DX) I have been unable to work for 14 years lost a really good job and am highly unlikely to ever be well enough to return to the labour market although I remain a very positive person despite all this. But I know I am not coping well at the moment due to a lot of pain and discomfort. And thought that reading some posts from here may help me see how others deal with it all.

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11 Replies

  • Posted

    God bless you you've been dealt a notes than you're fair share of troubles. I admire your positivity greatly. I can only content on the Hollie up aspect and you should have been followed up at the very least annually Tracey. Keeping the vulva protected from urine with a barrier cream will certainly help. I use Hydromol ointment . After using the loo I spray with water with a couple of pinches of bicarb in it, pat dry trying not to remove the barrier cream. I would just use water for now as you are so sore. The barrier ointment can be put on 30 after the steroid cream. It will make you a lot more comfortable in sure.

    I hope you get your hospital appt soon and that they can sort you out and improve the areas.

    Let us know how you get on.

    All the very best x

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  • Posted

    Hi Tracy,  I too have other autoimmune diseases (Fibromyalgia & Interstitial cystitis).  I'm not sure how long you have been on this forum, so I'm wondering if you have changed your diet to avoid wheat, dairy, sugar and acidic foods.  Also, have you tried the baking soda baths and the Borax treatment?  They have been a godsend to me and others.  One other thing to mention here for pain--There is a book called Back in Control by Dr. David Hanscom, which I highly recommend.  The book is directed at back pain, but it helps calm the central nervous system, which helps reduce pain stemming from any issue.

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  • Posted

    Hi Tracey

    i have found massive relief showering in hydromel ointment, I also use epimax cream, touch wood this seems to be helping.  I have an appointment with the drs on Wednesday so I can be referred back to the gynae consultant to see if there is anything else I can use or at least to see if I can get the hydromel ointment on repeat prescription 

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  • Posted

    Tracey, A naturopath told me if you have one autoimmune disease, more than likely you will get another, e.g. I am hypothyroid, have sjorgrens, chronic fatigue, going on 50 years now and LS and granuloma annulare from April 2016.  Hope you get better care than I do with our 'health' system.

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    • Posted

      Dear Tracey. Sorry to hear yo are suffering so much with this, I also get chronic fatigue my thyroid so far has been ok but have not had a blood test for quite a while, I do think we get fobbed off and LS is not really taken    that serious by GPs
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  • Posted

    Correction on my reply - The joys of predictive texting !!!!😈 what I meant to say was :-

    GOD BLESS YOU, YOU'VE BEEN DEALT MORE THAN YOUR FAIR SHARE OF TROUBLES............ I CAN ONLY COMMENT ON THE FOLLOW UP ASPECT...........

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  • Posted

    Oh you poor thing, my heart goes out to you. LS is horrible but you can get it under control. This forum is wonderful with many lovely supportive women sharing thier experiences. We are all different, so try different things and you will find out what works for you.

    Ask your GP to refer you to a Vulval Dermatologist. They are few and far between, but if you say where in the country you are, I'm sure someone will wade in and tell you the nearest. There's a special Vulval Dermatology Clinic at St Michaels in Bristol if you are in the South West. Your GP sounds aware which is a great start. Once you're in the system they'll keep an eye on you with a six-monthly or yearly check-up.

    Personally I use the Borax treatment and have had much relief from it, but I also use Epaderm ointment in a big tub (not Epiderm), which you can buy over the counter at Boots. I use it for washing, instead of soap, and as a barrier cream when I am sore after every toilet visit. Most days, when I am not sore I use avocado or jojoba oil with a few drops of chamomile essential oil (it's got another name, begins with M but I can't remember it), I put this on after every toilet visit. There's Emu Oil too which is very popular, I tried it and it was good, but I prefer the above things, you'll need to work out what's best for you.

    In short you need something to make it feel better (steroid, borax, baking soda), something to act as a barrier to stop urine making it sore (see what others use as barriers, my favourite is Epaderm), and something to moisturise to keep the skin supple and soft (Emu oil, avocado oil, it's personal again, check the forums). It's a juggle but can be managed. I hope you find some relief soon. Most importantly get yourself referred to a specialist clinic where you'll get support.

    Good Luck

     

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  • Posted

    Hi Tracey,

    you our have a lot to cope with.  Have you ever used to clob ointment?  I use betnovate for excema flare ups on other parts of my body I have for thirty years only a tiny tiny bit but I know clob is more potent than that just wondered if it needed that instead.  I would ask about follow up when you next go.

    i am same as you diagnosed and discharged all in two visits and even have had no biopsy explanation in the nine weeks ago I had it done so I aren't at all pleased and have been referred back for a vulvascope which is this Thursday and I'll ask about follow up again.  I don't see how we can just be left to deal with it without at least a yearly check up.

    GPs at my surgery haven't even heard of LS so that wouldnt work well them checking on me.  

    How is long till your appointment do you think?

     

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  • Posted

    GET YOURSELF TO A DERMATOLOGIST! They specialize in LS. You should be seen and followed absolutely very closely until you are in remission. My LS started 6 years ago with just sporadic episodes of itching. Then 2 years ago I had appendicitis and 6 weeks later full blown LS. I am finally in remission and being treated at University of Michigan and by my Dermatologist. It will only get worse if you don't get into a treatment prigram. Eliminate sugar and diet sodas, eliminate aspartame from your diet. Sugar feeds inflammation no matter where it is in your body.

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