Hi Elissa
Your symptoms are similar to mine - even down to sore where knicker elastic is at top of thighs, trying unbleached toilet paper etc., irritation/burn to vulva/perineum/'back' as you describe. I also have frequency/urgency.
I'm still trying to get answers - my main discomfort is the 'back' which prevents me walking, sitting, sleeping. Worse at times.
I had an early menopause so no oestrogen for 15 years so that's where I looked first.
I've come across a lot of ignorance when seeking help (which has caused stress) so had to self-diagnose and ask for oestrogen as I found bits out. I think I've mentioned a bit about this in my previous posts. I didn't mention the 'rear' in my posts though - as no-one else seemed to have this problem and being ignored about it at the GP's didn't give me confidence to be open about it. I still find it more embarassing to talk about that than the vulva - hence calling it the 'rear'! Fortunately, I now seem to have got a GP who listens and I'm beyond any embarrassment now and call it by the proper name there!
Am using Vagifem daily, and Ovestin daily to the vulva + trying a little on the 'rear'. Also been stop/start (due to bleeding) with systemic over the last 2 years. I've recently got the Mirena and am currently on a low patch till I increase.
I also now get the burning sensation in my thighs which is worse when sitting.
Have you looked into pelvic floor dysfunction?
Jilly Bond, pelvic floor relaxation info online might be of interest.
I found when I read 'Heal Pelvic Pain' written by a womens health physio I identified with it so I've started the exercises in that book whilst I wait for a physio appointment.
The underwear/clothes rubbing has got better though. I found preventing dryness by using an unfragranced body lotion or emolient helped. I find a thin layer and not dressing till it's soaked in better. The heat seems to aggravate it. I also suffered with it around the bra area and the underarms were a problem. A GP prescribed an antihistamine and that helped when it was bad but I now manage with a light pat of emolient every day to prevent any dryness.
Sorry if my post is a bit rambling. I haven't much time at the moment but wanted to post quickly because of your similar symptoms.
Hi Wren, thanks for taking the time to post. I'm sorry to hear that you've been struggling also, it's all consuming isn't it!
My burning feeling (like sunburn or someone's taken a blowtorch to the area), redness and irritation has been 100% in the perineum, bottom area and between the buttocks
I have in fact had red burning skin right to the top of the butt cheeks! The skin actually split there at one point and it was so painful when water in the shower touched the broken skin. The skin was tight between the cheeks too (swollen?). Have you by chance had anal fissures as part of this too? Sorry if tmi!
The only time my 'front' area (labia area) has been involved is when it has been occasionally itchy and I've had the odd 'paper cut'.
At my worst, I have struggled to wear knickers and change to PJ bottoms in the house. I find it painful to sit down because it's the back area that we sit on. I would have previously thought you sit on your buttocks but they actually spread when you sit so you end up sitting on the perineum etc. Who knew?!
I haven't struggled with the pain when sleeping which must be awful. Instead I get insomnia from the hormones and end up lying awake worrying about it all
My thighs might be a little different to yours as they don't hurt unless I walk and they rub together or I walk and the seams rub my thighs. I don't feel a burning all the time like I do in the perineum etc. My issue feels like chafing and it might just be that! It just seems strange to have started all of a sudden and to be so severe. I'm currently assuming it's extremely dry skin due to low estrogen and can only hope it gets resolved in the near future. I in fact did not mention my thighs at the GUM clinic as I didn't want to confuse things.
I have come up with a work around in the meantime which I hope might help you too...cycle shorts. I bought cotton cycle shorts and wear them under my pants (trousers). I'm in Australia so it's winter here so not too hot with 2 layers. This is not a solution of course, but allows me to do my housework etc without being in pain. Because my pain in the perineum etc has reduced and I have my shorts, I'm hoping I can resume walking - haven't been able to for over 3 months! Wish I had thought of the shorts a little earlier but instead I was busy working on a solution without success.
Thanks for mentioning pelvic floor issues as it's on my radar too. I did in fact have an issue before having kids. 'Vaginismus' was mentioned by my GP when I described the issue hubby and I were having. I attended 2/3 appointments with a pelvic floor therapist/physio and we had discussions about the issue. She never examined me but whatever she said worked. I feel pregnant almost immediately after consulting with her! She said come back if you need to but I never did. Pretty sure I must have tightness still and have read that it can cause burning and redness too! Very interesting.
I think I might go and get an assessment as although Ovestin appears to be working I'm eager to rule out all reasons for the excruciating burning to come back!
Please let me/us know how you get on with your physio appointment when you go. I hope it helps x
Sorry for such a long post. Thanks again everyone