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[Dierdre]

Thanks both.

The GP who thought it might be LS prescribed Betnovate RD in November which seemed to soothe it a bit. I did try it again a couple of nights ago but it didn't soothe and seemed to irritate more so I didn't carry on with it, maybe I should have. They made it clear then that they won't give me anything stronger and I don't think they will give me any more of the betnovate when it runs out. The gynae gave Eumovate but there was a national shortage of the ointment so I reluctantly accepted cream and it didn't help so she told me to stop.

I've messaged the gynae for advice. I am in despair  - I'm not even sure I can go to physio in a couple of days as it hurts so much. I really don't feel my life is worth living unless someone gets to the bottom of this but I have completely lost hope.

I think at this stage everything you use will sting and burn because you are so sore.  The Betnovate is a steroid cream and should help the healing faster if you can tolertate the initial stinging. Maybe try it again when you have taken the amitriptyline.  I was told to use twice a day for a month then twice a week for maintenace but I just use when i have a flare up which is rare now. Using the Ovestin externally every night has controlled the flare ups.

[Pandabear]

Hi,

I know you have lots of brilliant suggestions but just wondering if it may be worth looking at the desogesterel? This can cause dryness I believe. Did you start this and then things got worse? Just a thought.

Sitting in cold bath and coating with Hydromol ointment (over the counter) and pain relief may also be worth a try until things settle.

Hope you have had some luck with the gynae.

Take care x

[Nico]

Thanks all of you so much for all the replies. It does really help to hear that some of you were where I am now and understand (and got better).

I took some codeine this morning, which slightly took the edge off the pain and calmed me down and I had a bit of a snooze. Pain is worse again now but I can cope at the moment distracting myself with reading and watching stuff. Have been in bed all day and it's marginally more comfy than sitting. Obviously codeine is constipating as well so don't want to take too much of it but it's there if things get unbearable again.

I also tried some frozen peas wrapped in a towel last night, which was, er, different. A different sort of pain anyway. Might try a coldish shallow bath with either Hydromol or Epaderm. Has anyone tried those oat sachet things you can get for the bath?

I may try restarting Betnovate. I know most doctors are very wary of it but I don't think it can make this any worse?

Unfortunately the gynae is away this week but she is back next week.

Panda I am not sure about the deso. I've been on single deso since Jan 2021 (and double for about 5 months) and the atrophy was diagnosed end of June 2022 so probably isn't the cause but then the atrophy didn't happen overnight so who knows.

[pepperminty]

Hi,
Sorry that you are in so much discomfort.

Perhaps try estriol  0.01% which is the weakest on the outside and only use a pea size amount for the first week and slowly increase. It has peanut oil in and is moisturisng and less likely to cause problems.
When you wash put a layer of hydromol on the outside, which although very thick and ointment like will protect the skin.  Again creams can be irritating.

If the outside skin is sore then steriod ointment not cream  is usually prescribed for 3 weeks. Emuvate ointment is what most vulval dermatolgists tend to prescribe. ( again start small if you are worried about reactions ).
Do not wear knickers if you can - long skirts are a must!
Less is more with the vulva area- it can react to everything until you get it to a managable state.
Yes VM can also be used as a moisturiser.

I hope you get it sorted soon

PMXX

[Minusminnie]

Less is more with the vulva area- it can react to everything until you get it to a managable state.

Totally agree with that.

Might try a coldish shallow bath with either Hydromol or Epaderm. Has anyone tried those oat sachet things you can get for the bath?
 

I bought a shallow rubbery trug with two handles from an agricultural store.  My idea for a sitz bath that works for me. I use this within the shower to very occasionally give my vulva a soak or general clean in warm water.  I do have a seat in the shower to put it on but it might work for you in the bottom of a bath or shower base.  One lady on here used emolient in the bath and then found it hard to clean off the bath.

Hope that you are feeling a tad better today.  Take Care.

[Minusminnie]

Hi,

I know you have lots of brilliant suggestions but just wondering if it may be worth looking at the desogesterel? This can cause dryness I believe. Did you start this and then things got worse? Just a thought.

Panda I am not sure about the deso. I've been on single deso since Jan 2021 (and double for about 5 months) and the atrophy was diagnosed end of June 2022 so probably isn't the cause but then the atrophy didn't happen overnight so who knows.

"Does desogestrel cause dryness?
Night sweats, vulvovaginal dryness and dry eye are reported as adverse drug reactions to desogestrel, an oral contraceptive, in 53 individual case safety reports in VigiBase."

I looked this up along with other references and the desogestrel can cause dryness.  Could it be as simple as stopping using that ? 

I've never used full HRT so others may be able to comment.

[Nico]

I will ask the gynae about it, thanks minnie. My eyes are really dry and itchy and have been for quite a while so you could be onto something. I did ask the GP about desogestrel last year as I had read that it stops the ovaries from working and they said it wasn't the cause of the atrophy. I am tempted to just stop as I don't need contraception at the moment but obviously if I stay on the HRT I need progesterone to protect the womb lining. (I will need contraception if this gets better.)

I've been back using Betnovate twice a day for a couple of days but no improvement yet.

I'm in a really bad place again mentally. My urinary symptoms are back too but I suspect it's stress - got physio later.

I've got a couple of names of vulval dermatologists though both are in London. I want to see how physio goes but then will probably try and get an appointment with whoever is available first. I'd like to see someone more local but the people I have looked up haven't got reviews.

I'm also going to try and get some lidocaine ointment/cream.  I have some Vagisil 2% stuff but it is perfumed and out of date. Does anyone know if I can get lidocaine 5% over the counter?

[Dierdre]

Think it's a prescription, I was prescribed it years ago when I was in a mess but never used it so can't help there if it was any good.
Just googled desogestrel and one of the side effects was hives on various parts of the body including genitals, could this be the problem? Can you change to one of the older versions of the mini pill with different progesterone? Might be as simple as that.

[Nico]

Thanks Dierdre. It doesn't look like hives and it doesn't itch so I don't think it is hives.

I could go back on Noriday, although I am not sure if it can be used as the progesterone part of HRT. (I don't want Mirena). I don't need contraception at the moment because I can't have sex. I suppose it might be worth either trying Utrogestan and stopping the deso completely or stopping both deso and HRT.  And then worry about contraception later.

I'm off for my physio, fingers crossed.

[Nico]

Update: There is absolutely nothing wrong with my pelvic floor. It is not tight and is releasing correctly on demand. The physio has given me some exercises to do anyway but she thinks the pain and all the bladder stuff is either nerve or dermatology related or both. She said the tissues both external and internal are pretty well oestrogenised and it's not as red as some she sees. And she suggested using 5% lidocaine every day for 6 weeks.

I suppose it's good that my pelvic floor is ok but I was hoping she would find something that we could work on.

I've managed to order 5% lidocaine on the internet, the pharmacy I went to said it was prescription only but I think that's wrong. I've also got the amitriptyline now.

I have contacted 2 vulval dermatologists in London to check availability.

Onwards...

[Flossieteacake]

It is good to know your pelvic floor is healthy but I understand how you feel.

Hopefully, if it is to do with the skin then the right cream will help.

[Nico]

Small update. I saw a vulva dermatologist in London yesterday and she thinks it's probably eczema rather than lichen sclerosus but she's not 100% sure. So we're trying steroid ointment for 6 weeks and then if that doesn't help it's probably time to do a biopsy.

Interestingly she said she doesn't believe in using oestrogen creams on the outside (few oestrogen receptors there) and thinks it might be irritating me. So I might stop and see what happens. Will carry on vagifem obviously.

I think either the amitriptyline or lidocaine are starting to work as I have had a few hours here and there with either no pain or reduced pain which is great.

[Flossieteacake]

Small update. I saw a vulva dermatologist in London yesterday and she thinks it's probably eczema rather than lichen sclerosus but she's not 100% sure. So we're trying steroid ointment for 6 weeks and then if that doesn't help it's probably time to do a biopsy.

Interestingly she said she doesn't believe in using oestrogen creams on the outside (few oestrogen receptors there) and thinks it might be irritating me. So I might stop and see what happens. Will carry on vagifem obviously.

I think either the amitriptyline or lidocaine are starting to work as I have had a few hours here and there with either no pain or reduced pain which is great.

I have had eczema there and it is awful. I am glad you have some cream for it now and I hope it helps.

[Nico]

Unfortunately I can't get the ointment, have tried 4 pharmacies, maybe I should have tried in London yesterday although it sounds as though it is just impossible to get. So I have to contact her secretary and get her to prescribe something else. It's not the first time this has happened either, I couldn't get Eumovate ointment a couple of months back and I was told yesterday it's not available until at least November because of a manufacturing problem.  If it were insulin or thyroxine it would get sorted out but because it's steroid ointment no one cares.

[Flossieteacake]

Unfortunately I can't get the ointment, have tried 4 pharmacies, maybe I should have tried in London yesterday although it sounds as though it is just impossible to get. So I have to contact her secretary and get her to prescribe something else. It's not the first time this has happened either, I couldn't get Eumovate ointment a couple of months back and I was told yesterday it's not available until at least November because of a manufacturing problem.  If it were insulin or thyroxine it would get sorted out but because it's steroid ointment no one cares.

It sounds like there is an issue with this. How frustrating for you. I think it is a good idea to ask for something else. I hope they do not take too long to get back to you with this.