I am in pain and scared

[Iamreallyworried]

WARNING: GRAPHIC DESCRIPTION OF AWFUL SYMPTOMS.

In March my GP diagnosed lichen sclerosis and prescribed a strong steroid cream. She referred me to the local vulval clinic.
I was given a telephone appointment for tomorrow which has just been cancelled and moved to mid August, another telephone appointment. I have tried to get a private appointment and the only availability is also in August.
I have used the medication as directed, but when I reduced to twice weekly all the symptoms have come back.
The situation is further complicated because a month ago my GP surgery switched my repeat Px for vagifem pessaries to vagirux. The blurb says they are the same thing, but I am now 3 weeks into using them and ALL my vaginal atrophy symptoms have returned.
I am in so much pain I can't sleep, I am needing to pee all the time, I am so sore and I having difficulty passing urine.
The internal walls of my vagina are rock hard, rigid and very tender.
I am in despair.
The only 2 consultants in my area are not available due to illness and maternity leave.
I don't know what my GP can /will do.
Can anybody give me any reassurance or advice? Sorry for TMI but I am beside myself. I am away from home on a short break (booked months ago) and can't get home for another 4 days.

Anybody? Just bumping in the hope of a reply.

Oh poor you that sounds awful. Could you get to an urgent care centre ?

Ouch

I have LS, for years, diagnosed initially as a child
Firstly, I’d try again to book a private appointment. I’ve always found the nhs to be utterly shit with this condition.
when I’m in a flare, I find applying dermovate ointment twice a day helps. Until it clears. Then twice a week until another, even if no symptoms.
I’ve recently finally, again privately, been recognised as being in peri, and now have estriol cream too. This was also every day for 6 weeks and now twice a week. Applied externally, not just internally as instructions say.
in between applications of cream and ointment during a flare, cool water, no pants, spending as much time as possible lying down, Vaseline after every toilet visit, I’ve switched to a Japanese toilet and only use toilet paper when out, although also pack baby water wipes and bin them.
I’ve also started using Nadaya victory oil every day, and a combination of that, estriol and dermovate have made a huge difference.

Hope you get through this quickly. Take painkillers, try to stay lying down as much as possible, and make a private appointment as soon as you can. In the meantime, rather than GP again, I’d try an appt with a sexual health clinic.

I am with a tour group in a rather out of the way place. I had no idea all this would happen when I booked this short break. It just all feels impossible.

I am late 60s. Was doing ok with vagifem for last 10 years but these Vagirux ones don't seem to work. The LS symptoms were settling, although I did note that the area affected was getting more extensive. I take pain killers for arthritis - I didn't take them today because I try to ration them. Maybe that is why I am in so much pain. I will take paracetamol tonight and my stronger ones tomorrow. I am really worried about the changes internally tbh. I am scared of cancer.

Oh dear that sounds hellish. My MIL had that 40 years ago when she was in her 40's. I don't remember much about it now but she was cured.
Hope this helps just a bit.
Have you tried Vaseline on your sore bits ?

Thank you all for your replies. I am using Epaderm as a moisturiser. I was advised to use it when first developed vaginal atrophy.

Since you are away, get yourself to Holland and Barrett, or any health food/supplement shop and buy some sweet almond base oil. Use that as a moisturiser until you are home and have managed to order online. Likewise go to boots and get Ovesse cream OTC if you can’t get some via 111 sent to the spine to collect from any pharmacy.

And if going to boots get some of these too

https://www.boots.com/boots-bump-and-beyond-cooling-ice-maxi-pads-10357945?traffic=paid.shopping&gclsrc=aw.ds&gad_source=1&gad_campaignid=21391634568&gbraid=0AAAAA-AdmwSRAqe-gj6bfoWzC5AMLp3DX

Topical tacrolimus 0.1%
Gp may not prescribe it without specialist input. See if anyone you know has some. Often prescribed for eczema