Feel let down
Posted , 8 users are following.
For over 15 years i have suffered with what i was told was recurrent thrush. The flare ups could be awful. Cracked bleeding skin above my clitoris, crusty white flakes from blisters, awful itching and pain. Periods were awful, all towels made my skin blister, crack and bleed. I had a hysterectomy due to menorrhagia, which was bliss as no longer needed sanitary wear.
5 years ago i asked if Lichen Sclerosis could be the cause, to be told no, that's very rare and it was just thrush.
Earlier on this year i finally had a good look at my bits and was so sad and freaked out to notice my inner labia is virtually non existent as is my clitoris.
Made an appointment with the gp, to be told it was the menopause, (im 46) and also if i lost weight it may help!!! Prescribed estriol and told to use that.
I wasn't happy with what i had been told, so had another appointment with a different gp who took bloods. Results came back that nope it isn't the menopause, and that Lichen Sclerosis is now more likely to have been the cause of all my issues over the years.
I was so upset, and felt letdown, she prescribed me clobetasone and cream to wash in, and i have an appoinment at the end of this month to confirm the diagnosis.
My husband is amazing and understanding. But i feel a freak and so inadequate. Is this it?? Have my bits gone for good?
I have a pic i will try and add.
0 likes, 28 replies
stephanie67223 Guest
Posted
I'd be going back to that GP and give them a big piece of my mind
As far as I'm concerned your GP had failed you miserably and need to take accountability for there negligence.
Guest stephanie67223
Posted
I burst into tears when my gp said that actually maybe it is Lichen, she apologised it wasnt diagnosed earlier but said thrush is so much more common...
I have a lot of things going on outside of this, i really am not in a place to take things further. This isnt even the first time i have been let down by gps, which is why im so stressed now to know if this is the right diagnosis.
Everything has been a struggle to be heard/listened to 😦
Wee_Dugie Guest
Posted
I am really sorry you have had the experiences you have had with medical professionals that have badly let you down. I am a male that has been dealing with LS for 8 years now and I have learned how to successfully manage mine with Clobetasol, changes to my diet and by taking Vitamin and essential Mineral supplements.
Here is the most essential advice I can give you to put in place: the specialist you need to be helping you is a Genital or Vulval Skin Disorders Specialist. Many of these are based in hospital Gynaecology departments as most sufferers are actually women. You need to make sure the wrongs that you have experienced are put right, and the beginning point of this is the best health specialist possible.
You may even need to find the specialist yourself, if you live in the UK do an internet search such as this:
.
You can phone the departments that you can travel to, you may need to be quite assertive, but polite, state you have been misdiagnosed for many years and you now need to find the best possible care that you can now get. If it is possible, visit 2 or 3, make sure you note the specialist's name and ask if they are prepared to see you on an ongoing basis until your skin is as healthy as possible.
Good Luck .....
Guest Wee_Dugie
Posted
Thank you for the reply. Yes im in the uk.
my appointment with the gynae is at the end of this month and will see what they are specialist in then.
If im not happy with them i will definitely search for someone as of your advice.
Its all a bit overwhelming, i feel as if its as bad as it could get but on reading these forums i can see its not, and treatment will still be needed so things dont get worst 😦
Wee_Dugie Guest
Posted
Hello, thanks for getting back to me.
So what I would do is before your appointment is do a search online for the specialists in the region of the UK where you live (NHS - Genital Skin Care - and .... ) - it is best to have this knowledge, particularly in knowing at which hospitals they are actually based, before going along to any appointment.
If there are already such specialists at the hospital at which your Gynae appointment is, then your referral should be straightforward.
I am actually an NHS trained patient representative and you would not believe the problems some NHS patient's have in getting access to the specialist they need to see. So if it were needed, you could say I know there are the specialist that you need to see and that you would like to be referred to them. Of course, the Gynae you see could be one such specialist as they are often based in Gynaecology departments, what they need from 'a normal Gynaecologist' is the detailed training of a Dermatologist .......
Guest Wee_Dugie
Posted
Hey. Looking online there are specialist in vulval skin disorders (dermatologists) in the hospital i have been reffered to (southmead hospital) and more in a different hospital close by.
Wee_Dugie Guest
Posted
Excellent! With a bit of luck the Gynae you have been referred to will be such as specialist. When you go ask if they are, and if not, should you choose, ask to be referred to one.
Be up front, and state you feel badly let down and the treatment you receive has a lot of catching up to do for all the unnecessary time lost! The most likely treatment you will be given Clobetasol, make sure you fully understand how to use it and ask if there is any further treatment the specialist would recommend.
During the consultation if you cannot take in everything the specialist is saying, tell them that. Ask them to slow down and explain in a way you can understand.
You should also be given a leaflet stating in detail how to use the Clobetasol, if not, be prepared, take a little note book with you, write the details down, and again, if you feel you are being rushed, state I want to make sure I get everything right, so repeat back to the specialist what you have written down to make sure it is correct.
Good Luck ...
Guest Wee_Dugie
Posted
Thank you once again, it is very appreciated. My husband will be coming with me so have an extra pair of ears and support, i'll update after the app x
sarb73328 Wee_Dugie
Posted
weedugie that is really helpful clear advice. We should all make more fuss to get the right care I think and it's so important to cross question anything you don't understand as doctors can talk over you and too quickly for sure. And remembering it all once you come away is so difficult esp when you are upset and stressed.
Wee_Dugie sarb73328
Posted
Fully agree Sarb, I think most people who see a medical professional do not know instinctively how to get the best out of a medical consultation. These situations are often very difficult to take in and fully understand what is being said to us.
In the UK if you see an NHS GP the consultation is meant to last 10 minutes, and you are limited to discussing one specific issue. This makes the situation 'pressurised' to start with.
It is best to have it clear in your mind what you need to get across in advance of seeing the medical professional. Write down the most important points to remind yourself in a brief and succinct manner - take this with you. Then write down the salient points, ask for clarification of what you do not fully understand.
For something that is really complex to understand do not be afraid to go back and say, "I do not understand fully what my situation is" - how can anyone deal with something if they do not understand what they have and how it can be treated would be my recommendations ......
Guest
Posted
Well just had the appointment with the gynae. After he examined me he said there was nothing there to see abnormal and no reason to biopsy as it wouldnt show if it was lichen.
On me replying my bits had shrunk badly he just kind of shrugged and said he wouldnt know as it was the first time he examined me.
He did say he would recommend to my gp to prescribe me cream and that she could refer me to a vulval specialist for a second opinion as he is unsure what i have.
When i asked him what cream and how often to apply it he said it would all be written in the report to my gp,
When pressed on which cream and application he did say it would be dermovate and said daily for a week or two, then see what happens.
I asked if it was lichen i was concerned a flare up could happen and affect my urethra and vagina opening, he said that was really unlikely to happen.
So just have to wait to see how long it takes for my gp to get the report.
Meanwhile i am still unsure if it even is LS!!..
Guest
Posted
To add he said he could see scarring on my 'lack' of clitoris, which i pointed out the piercing i had was way above my clitoris, it was through the then skin above i had...
patricia22367 Guest
Posted
omg I had a doctor tell me almost the same thing, she said that since my white patches were flat she couldn't do a biopsy because there was nothing there to biopsy.
When I got in to see a specialist she did a biopsy right there and I got the diagnosis within a few days.
So get the referral to the specialist, or can you search and try and find one on your own?
And that guy isn't a good doctor, you said your bit shrank and he said "he wouldn't know" as if you were asking him if they did? And a biopsy does too show that it's LS.