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
pamela70431 Guest
Posted
i completely understand what you are going through. i am in a very similar position.
your bits are gone and wont regrow. you need a gynae referral to some one who specialises in this.
i am very fortunate to have a gynaecologist who does specialise in this area. i really hope you find one. x
Guest pamela70431
Posted
Thank you for the response.
I had guessed that whats gone cant be bought back, but was hoping to hear a miracle cure i guess 😕
I think i have just been referred to a normal Gynae but the referral is very clear so hopefully has been picked up by someone who is knowledgable in this. I dont know if they will be able to say for sure without a biopsy.
Its so isolating, its very difficult to explain to others without coming across blunt and to the point, which i have done to a few friends, but its obviously difficult for others who arent going or have gone through it to understand.
I feel mutilated by this illness. And am angry it wasnt diagnosed sooner before things have got to this stage.
Sorry for venting, and thank you for reading x
Guest
Posted
"Please could you see this lady, who is very distressed with regards to the change in appearance of her genitals and, in particular, the loss of her clitoris. She has a background history of what she thought was recurrent thrush since her 20's. She has been seen very occasionally for this over the years and tried Timodine on a couple of occasions but not returned for follow-up at those stages. She did have genital piercing at one stage but removed this a few years ago. She presented more recently with the above changes and vaginal HRT was tried, which made her more comfortable. However, an FSH has returned as normal. She also had a hysterectomy about a year ago for menorrhagia.
On examination, she has loss of architecture of her genitals and no clitoris was seen. Her lower vagina is red. I think this is chronic lichen sclerosus and I have given her some Clobetasone cream and some emollient. However, she is very distressed about the appearance of her genitals and I would be grateful for your review to confirm the diagnosis and offer any further advice."
Took from my referral letter, which further saddens me as i didnt keep going as i kept being told it was thrush.....................hindsight 😦
sarb73328 Guest
Posted
Carr, I really feel for you. Mutilated is the right word and isolating is how it makes you feel. If you can't find a specialist gynae, try and find a dermatologist who specialises in vulval skin/LS. Keep up the oestrogen and steroid ointment and try all the moisturisers mentioned on this forum. It's appalling that you have only just been diagnosed after all those years, but keep heart that with careful management, you can stop it progressing further.
Guest sarb73328
Posted
Thank you.
The gp that said she thinks its Lichen Sclerosis told me to stop using the oestrogen cream and stick to the steroid cream.....
Hopefully the gynae will give me clear advice, i have stopped using the steroid cream at the moment as if im gonna need a biopsy i didnt want it to interfere with the results? x
pamela70431 Guest
Posted
the steroid cream wont affect any biopsy. labs can make adjustments for this.
how much do you know about LS?
pamela70431 Guest
Posted
the oestrodiol is no use to you. you are not menopausal as yet if your FSH came back as normal so you must still have your ovaries. presumably and your cervix so when you are menopausal then you will benefit from the oestrodiol as it would be useless to you vaginally otherwise.
pamela70431 sarb73328
Posted
when i went to my gp years ago she laughed at me and told me i had a senile vagina.
this condition is no laughing matter. i feel for each and every person who has this.
i learned through this forum that men can get this too. i thought it was a womans ailment. very surprised to find out this is not the case.
Guest pamela70431
Posted
Ahhh ok. The gp when she prescribed me it said to use it twice daily for 4 weeks then as and when! Which wasnt overlly helpful.
I only know what ive looked up, which isnt a great deal, and have scoured these forums for a while.
Guest pamela70431
Posted
Yes still have ovaries and cervix
Guest
Posted
I think im also worried they may say no its not Lichen, and i will still be none the wiser 😦
pamela70431 Guest
Posted
I was going to say that you can take the nurse out of the hospital....that old adage !
From the picture you posted this is classic LS. the changes in the labia and the clitoris.
i am now afraid to look at my down below bits ! i know i have big changes too.
i have been very fortunate that my gynaecologist is also a dermal specialist.
he is incredibly lovely and extremely kind. i see him every six to eight months unless i run into even more trouble.
i am one of the unlucky folk who have no relief from the itch and i can say in all certainty that i have had possibly a week in total where i have not been ripping myself to bloody shreds with this thing. it is extremely difficult to differentiate this from thrush. the main difference i have found is that you have a deep internal itch with thrush rather than the external itch with the LS. i too am fortunate to have an extremely understanding husband. i didn't know that the reason sex was too painful was because of the shrinkage of the vagina. my gp never mentioned any of this and believe me, as a nurse none of this condition was ever mentioned as a possibility.
Guest pamela70431
Posted
I feel for you. The changes are hard to come to terms with, i feel as if ive had fgm without the gruesome surgery (please dont think i take fgm lightly).
I get what you mean about the itching, and in hindsight can see how it has differed from when i actually did have thrush.
Im sorry to hear your still struggling with the itching! Its awful, i hope you find something that relieves it for you.
If i wasnt married or had a partner it wouldnt be so much of an issue. The hardest part for me is knowing my husband is so giving and wants me to enjoy things as i used to.
I feel a let down, even though he is understanding.
Im greatful for your responses.
And am greatful to have found this forum. I have been searching for something like this for months x
sarah24152 Guest
Posted
Hey Carr,
Your pic looks so painful - I'm 15 weeks into this ( fortunately a switched on gp suspected it at a very early stage, biopsy confirmed her thoughts but my Labia minora had already flattened as she described it ) so I'm not an expert.
I understand your frustrations, anger and sadness - hopefully now things will start to improve slowly and its likely to be slow progress. its important that your husband ( as mine did) reminds you that you are progressing ie - you didn't need any painkillers today. They seem insignificant but you have to cling on to them. I still have 'wobbly ' days where everything seems too much but they're becoming less frequent.
My top tip - WATER
a gentle mist after going to the loo every time, a gentle pat dry with loo roll ( gentle clean has skin society approval by ANDREX ) then moisturise ( CETRABEN ointment for me) but crucially make sure you are hydrated by drinking water ( tap water is fine for me ).
It has benefits for so much, dilutes your urine ( less stingy) keeps your stools softer and makes ALL your skin radiant. I treat myself to one cup of coffee a day ( i love that cup of coffee !) other than that its water water water.
My GP said today - your vulva is so beautifully moisturised !!!! Words i never imagined hearing 5 months ago but hey a compliment I'll happily take now. The soreness makes everything look much more horrific when things calm down you won't notice the changes as much.
I'm down to CLOB twice weekly now so am gradually less focused on LS - which is relief mentally, no more amytriptelene and no more paracetomol or ibuprofen.
Be kind to yourself and listen to some favourite music when you feel down.
Best wishes X
Guest sarah24152
Posted
Thank you for the tips, they are all appreciated.
My gp said it looked really sore, but to be honest i had become immune to the discomfort its been so long, i have since found using the wash cream that things are less 'tight' down below.
Just a waiting game on the gynae app now, i do have a holiday abroad before it, so hoping it will destress me x