Lichen sclerosus or what..?

[SinisterBumFacedCat]

Hello everyone

So 9 months after being referred to urology I had a cystoscopy today to investigate painful urination, cramps and general post sex stinging. Bladder has come back clear, apparently urethra is fine despite the lower part being constantly red and inflamed (this is normal, no diverticulitis, no caruncle.) Consultant suspects LS, as the skin is very pale. However during the last 9 months I've been regularly seeing a gynaecologist who specialises in skin and she ruled out LS quite early on, saying my skin didn't present in the usual ways for LS. Also my symptoms aren't itchy, or pain during sex, it's pain 2 days after sexual contact of any kind. Also pain is worse when I'm ovulating and better during my period.
I'm feeling pretty low about this, I already have chronic pain condition, another one is making me feel like giving up. Gynaecologist was very positive about a diagnosis of LS as she said it could be easily treated with cream, urologist was less positive and suggested going on the pill. Right now I am in pain, so sore when I go to the loo and tearful due to anesthetic and having to kiss my sex life goodbye at the age 42 and one year into marriage DP is wonderful and I miss intimacy with him like I'd miss chocolate

Any ideas, any hope? Thank you

[QueenoftheNights]

It sounds more like vaginal atrophy which can affect the vulva and everything else. Treatment is simple- estrogen cream from GP.

[SinisterBumFacedCat]

Thanks Queen. I was originally prescribed estriol but was unable to use it as it contains nut oil and I'm allergic to nuts, no one was able to locate a nut free estrogen cream! There must be one though.

[QueenoftheNights]

Nut oil? In Ovestin? How allergic are you? Anaphylactic allergic?

[QueenoftheNights]

Has anyone suggested it could be a tight pelvic floor? You might be suffering with bladder symptoms and urethral pain due to that. This is something that isn't always recognised by mainstream drs as much as it ought to be. The treatment is a kind of physio 'massage' to release the muscles. Have a google of overtight pelvic floor / treatment and see if it rings any bells. There are a handful of practitioners in the UK who treat this.

[QueenoftheNights]

pelvichealthsolutions.ca/for-the-patient/persistent-pelvic-pain/pelvic-floor-muscle-tightness/ Not a UK site but there will be people here who could help.

[QueenoftheNights]

This is what is in Ovestin. I can't see anything that resembles nut oil.

What Ovestin contains

The active substance is estriol. Each gram of cream contains 1 milligram of estriol.

The other ingredients are chlorhexidine dihydrochloride, octyldodecanol, cetyl palmitate, glycerin, cetyl alcohol, stearyl alcohol, polysorbate 60, sorbitan stearate, lactic acid, sodium hydroxide and purified water.

Is something here from nut oil?

[SinisterBumFacedCat]

Ah, I was given Estoral (can't remember spelling) had a masssive not suitable for nut allergy sufferers label on it. I'll check out overstin.
TBH I am still not convinced it's not VA rather than LS, it's very urethra specific, and gynaecologist didn't think it looked like LS or presented like it, it's not itchy it's just stinging pain. Thanks for all your advice Queen it's much appreciated

[QueenoftheNights]

I had what was referred to as 'urethral syndrome' for years . it's name they use when they don't know what's wrong. It was also diagnosed as IC (interstitial cystitis.) I had bladder issues and burning urethra. Sex was off the menu for years.
I was able to get some good improvements with diet (you will know if food and drink are your triggers), then later on Ovestin and full HRT.

The urethral burning was hell- I couldn't sleep and felt as if it was on fire. It would kick in about 5 mins after a wee.

I thought LS was easily diagnosed especially by an expert? The treatment is a mix of steroid cream and estrogen cream usually.It's usually on the vulva not in the urethra.

Estrogen cream can take a while to work- I had much improvement in 6 months and it was very gradual.

Are you having any menopause symptoms yet? 42 is a bit young (it would be early meno) but has anyone suggested testing your hormone levels?

[SinisterBumFacedCat]

5 minute delay of pain after wee sounds spot on tbh. I have tried cutting out certain foods and drinks but only really notice a change due to ovulation and sexual contact. If ovestin works I'll happily invest 6 months or more for some improvement. I'm still sore from the cystoscopy now, not sure if that's normal or me. I don't know if I'm menopausal, am still getting regular as clockwork periods and my mum and nan didn't until late 40s early 50s. I've had blood tests done but I will go back to gynaecologist and ask for hormone test.