Misdiagnosed for years

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I have seen about 30 Gp’s and nurses over 30 years with itchy, red and sore Vulva. Always told Thrush (even without looking at me) cystitis, menopause related. Swobs, blood tests etc etc etc.

Then 2 years ago after having a tear which turned to a ulcer that grew ( still told herpes) I had a biopsy which came back as LS and Vulva cancer! Wow never had heard of either and neither has anyone else I’ve told! Including some in the medical profession! And those that do don’t know enough! Especially what age you get them!  Turns out I’ve had LS since a child and as not using a steroid or having regular check ups it turned to cancer!

This needs to change!! 

I’m doing as much as I can to raise awareness and hopefully getting things changed with the medical profession! Like training nurses and Gp’s the signs!

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  • Posted

    Hi Clare, sorry that you have had such a rotten time. I hope that you are now being treated for the Cancer and that it is a success. I was very lucky that I was diagnosed by my GP who was examining me because I had a few UTI's and was sore. She was great and I am examined annually. I do hope that things go well for you now.

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  • Posted

    Hi Clare. Dear God, I'm incensed by your story , bless your heart. I'm so sorry you have had to go through all this because of the ignorance ( and arrogance some times) of the medics you have seen. All GP'S should know the signs of LS but when I've mentioned that I have it to some Drs they have no idea what it is !!!! I have told the practise manager that all Drs in the practice should take some training on it as the consequences of them mistakes as thrush (which they did with me for 18 months) could be getting cancer. I wish you good luck in your treatment and in your quest to get LS diagnosed quickly and efficiently.

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  • Posted

    Morning Clare

    my heart goes out to you and thank you for sharing your story. I have felt and been ill for a good 2 years and finally got diagnosed in January 2018. I am on steroid cream at the moment which I don’t really want to be on. Your story has now made me re-think about the cream and I will carry on using it if it reduces the risk of cancer. I hope you are now getting the best cancer care and support. I live in Solihull, West Midlands, UK if you ever want some reflexology which is really relaxing, give us a shout and I’ll do it for free.

    good luck in your recover and I agree that NHS has seriously got to start educating all doctors in this nasty soul destroying disease.

    kind regards reebok 😎

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    • Posted

      Hi reebok,

      I have just joined the site (literally) and have started to read some of the many stories written by ladies such as ourselves.

      ?My story so far is roughly like yours in that, although I had the itching a year ago, I started using the steroid ointment only in January this year. I had been prescribed it, but didn't want to use it from June last year and my GP told me it was only to help relieve itching and that it wouldn't cure the condition. So, in my wisdom, as my itching wasn't very bad at that stage I decided against using it. It was only in January on a routine check up at Solihull hospital that I was told more clearly that the steroid was a necessary treatment to hopefully stop the problem becoming worse. So I have started and stopped use 3 times since then, following doctors instructions on how much to use, where to apply and for how long. However, the area down there seems to be following it's own direction, ointment or no, and has changed so that I can no longer remember how normality used to look. I am so distressed that it's keeping me awake at night with worry.

      ?I have booked in to see a private dermatologist in Sutton Coldfield next Monday, and this very morning will be going to see my gynaecologist at Solihull Hospital, loaded up with all my fears and questions, hoping she can instruct me in clear detail how to use the ointment etc.

      I was pleased to read that you are in the Solihull area. It somehow feels reassuring that someone with the same problems is living not too far away. It helps to know someone nearby actually understands and shares the same problems.

      I am living in Redditch. 

      ?Wishing you all the best and I will be posting on this site again, specifically to you too, if I find anything more which may help overcome our problems and please feel free to contact me if you want to talk. It might be nice to meet up and share information over a cup of tea sometime. The mutual support might help, I am sure.

      All my best wishes to you.

      ?Julia

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  • Posted

    Thank you.

    I’ve had a hard 2 years with surgery’s and radiotherapy twice  as the cancer spread to my lymph nodes but this July I will be 1 year cancer free.

    I see a dermatologist (Dr F Lewis) every 3 months and use the steroid once a week as maintenance (pea size amount all over Vulva) 

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  • Posted

    Hello Clare, I am really sorry that you have had such a horrendous experience at the hands of a series of medical professionals who should have known far better, and, have been far more empathetic to your real concerns.  All you have asked is for the symptoms you were reporting to be taken serious, and for the correct course of treatment to be put in place.  Unfortunately, the professional practice you experienced fell far-short of even the basics of diagnosing what you actually have had for all those years.  This is really bad!

    Auto-immune diseases are so common and are clearly linked to our modern diets that have been around for decades now. I have LS and Chronic Fatigue and I know that there is really poor understanding of conditions such as this within the NHS.  As well as these, through contact with a number of voluntary organisations in my area who support people with mental health issues, I also found doctors DO NOT even have to have ANY training in mental health to know how to respond correctly to people who experience all kinds of problems.

    Really, it is time there was a complete overhaul in the medical conditions GP's and practice nurses are trained in so that people who have a whole range of conditions do not have the tragic experiences that you have had!

    I really hope the medical professionals that you have contact with now are getting their collective act together and giving you the best treatment possible to alleviate, control and cure what it is you have ended up with.

    I am wondering, do you have any ideas on how you can take forward your experiences so that CHANGE within the medical profession can occur?  The NHS has been in place for 70 years now, understanding, training and professional practice should not be so far behind what it is that people are actually experiencing.  This has to change ... if you have ideas on how we can help achieve this do let me know?

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    • Posted

      The most obvious help would be training those who do smear tests to know the signs in Vulva conditions like LS and cancer.  The eve Appeal are hopefully starting a online nurse training on LS VIN and Vulva/vagina cancer, which they have ask me to look at as a patients point of view. 

      It’s hard enough getting diagnosed with cancer without it being one not only yourself not of heard of but all those in the health profession. I saw a lot of district nurses during my recovery and only one had heard of Vulva cancer let alone LS. And she thought they got my age wrong as she had only seen it in a 80 year old.  Which leads me to the next problem! These conditions are getting misdiagnosed because All information says mostly in women over 60! Which may of been the case many years ago but isn’t now. I’ve seen some in there 20’s 30’s but mostly 40 to 59!  And because of this doctors and gynaecologist aren’t telling LS paitents the risk and others saying your to young to get Vulva cancer! So the information needs to change! Including on this site as they say the same about age. 

      I told my story which went viral and has helped spread a lot of awareness but not enough is being done even with the gynaecological charity’s.  

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    • Posted

      Hi again Clare, the real tragedy is that you have had your health put in such a precarious situation, had to undergo such radical and invasive treatments, and all of this could quite easily have been avoided.  We all know people who the NHS does wonderful things for on a daily basis - but it seems to me that there are a whole raft of conditions that do not receive the same level of understanding, remedial attention and TIMELY intervention, as your story highlights.  Why should such a situation even exist?!  Lack of funding, lack of understanding, or even lack of basic training?

      I think I have heard on here that UK based ladies have mentioned there are Vulval Conditions specialist within the NHS, but obviously, the presence of these could be few and far between.  Like with other conditions, good, or even excellent practice does exist, but is very sporadic across the UK.  While in other areas basic lack means that peoples lives at placed at huge risk!  And, the training of the GP's you have had contact with - how could this have been so wrong?!

      It is wonderful that you have had such a reaction to raising awareness of how you were treat within the NHS - my real fear is that there will be so many women who have been placed in a very similar situation as yourself.  Again, as I have found, unfortunately, there are other people with different conditions that do not receive an even basic level of empathy, and are merely fobbed-off with lame excuses as to how their conditions such be dealt with, and the correct intervention and even sympathetic approach are simply NOT happening!  Time, and time again!

      GP training has to be far better than people like yourself are receiving - we can only hope, one day this will actually occur .....

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  • Posted

    thats terrible! i feel lucky as a nurse recognised the signs of LS when i went for a routine cancer smear.( i was red raw and very itchy)She insisted i saw a gp that day and i did ,the GP refferred me to gynae at the hospital and i see him every 3 months and he does a cancer smear test each time.So should i be diagnosed with cancer i know it would be very early stage.The hospital have been great,explaining anything i ask and in laymans terms.i do hope you continue to stay cancer free x

     

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  • Posted

    So sorry and shocked to hear your story, Clare. Sadly it is common for LS symptoms to be missed and I am so glad you are drawing attention to that fact. It took me a while to get a diagnosis and it was only because I asked to see gynae that I was properly diagnosed and prescribed steroid cream, four months after I had first seen my GP with fusing and four years after the symptoms had started. Given that those professionals who are LS aware, it is astonishing how many of us slip through the net. Awareness has to be more wide spread. Well done for going online and spreading the word. We all have to shout loud about this awful condition. I feel for you, cancer diagnosis is what we all dread. I wish you well. Well done for going online with this.

     

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  • Posted

    Hi Clare, that is a terrible ordeal you have been through.  I was wondering if you dont mind explaining in more detail where the cancer was exactly as it may help others.  Was it a sore that never healed?  What and where exactly were the symptoms of the cancer...thanks a lot.
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    • Posted

      I had a tear in my perineum  (6 o’clock ) which didn’t heal. It then turned into a ulcer/sore which just kept getting better.

      There are many symptoms of Vulva cancer and you don’t need All of them.

      They are

      Itching 

      Lump

      Ulcer/sore that doesn’t heal

      Redness/pain 

      Mole that changes in size or colour. 

      What makes you more at risk is Lichen Sclerosus

      Vulval intraepithelial neoplasia (VIN) 

      HPV

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    • Posted

      Hi Clare, thanks for that.  I just googled you and saw your story.  I'm English but I missed this.  What is really awful is that women are still getting similar treatment from their doctors.  I put it down to laziness.  I think some doctors dont keep up with whats going on around them and really when you think about it LS is really quite an easy disease to diagnose bearing in mind the long list of symptoms that we all have. 

      On top of that most of us usually present ourselves at the docs when our Vjay is white and that is the biggest give away that it is LS. 

      I hope you are doing well now. 

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    • Posted

      I frustrating thing is that it could be diagnosed when you go for your smears! Which is what I’m trying to change.

      Do you know there Facebook groups for LS.

      I have lots of side affects from surgery and treatment but considering what the outcome could of been, I’m lucky! 

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    • Posted

      Couldn't agree with you more Guppy. Then when you ARE diagnosed the consultant is so matter of fact, sticks a tube of steroid in your hand and shows you the door with a "see you in a year" dismissal, leaving us totally devastated, scared and feeling very alone. Its appalling !

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