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[CLKD]

I believe that some ladies insert a small dab of moisturiser inside, B4 using the VA treatment. 

[Minusminnie]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

[margherita]

I would definitely consider the thrush option - I personally didn't bother with testing when I got a sudden onset of atrocious burning etc and no systemic or local E2 helped. I bought an otc kit with a cream and capsule and it gave almost immediate relief.

[SaraUK]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

Thanks. I did read about that and as I do suffer with anxiety it’s possible. When I get anxious the burning and bladder flares up. It’s up and down each day. I’m still waiting for a basic diagnosis before asking for that. How does it work and is it on nhs or private?

[SaraUK]

I believe that some ladies insert a small dab of moisturiser inside, B4 using the VA treatment.

I can’t even use moisturisers, the only one that didn’t react but also didn’t do much to improve anything either was yes OB.

[SaraUK]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

Ah interesting because that might explain why I improved off the topicals and it never got worse.

Incidentally I’m now on day 7 of provera on my long 13 week cycle and my bladder is playing up more along with the burning on and off all day.

I wonder if progesterone irritates nerves or even caused the whole bladder thing. If so, I don’t know what hrt I’ll be able to tolerate.

[SaraUK]

I would definitely consider the thrush option - I personally didn't bother with testing when I got a sudden onset of atrocious burning etc and no systemic or local E2 helped. I bought an otc kit with a cream and capsule and it gave almost immediate relief.

I’ve actually got the same kit at home ready. I’m just waiting for confirmation that it’s thrush tomorrow before I use it.

God I really hope it is. That would be easy to get rid of. I’d be celebrating if it’s just that, after 5 months of hell.

[SaraUK]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.

One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.

I started breathing exercises last month, maybe that might help.

[MrsMitch]

Another suggestion Sara that really helped me, I was 12 years with incorrect diagnosis,  is Locoid cream. It's available online and not too expensive.  It's a local anaesthetic and I will warn you it stings and burns like crazy when you apply it but the relief is wonderful.  It only stings for seconds and then everything gets beautifully numb. Once things are numb you can apply a little more without the stinging.
My GP initially gave it to me on prescription just so I could get some pain relief.  My gynaecologist prescribed it because she insisted I had vulvadynia and I disagreed. I mentioned using Locoid so she said to try it again to prove her diagnosis correct - vulvadynia is nerve pain and a local anaesthetic wouldn't stop the pain. Obviously it worked and proved her wrong!
Just a suggestion because the GP and gynaecologist told me to use it as often as I wanted a break from the pain. It really seemed to calm things down after a while, particularly the urethra issues.

[Minusminnie]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

Ah interesting because that might explain why I improved off the topicals and it never got worse.

Incidentally I’m now on day 7 of provera on my long 13 week cycle and my bladder is playing up more along with the burning on and off all day.

I wonder if progesterone irritates nerves or even caused the whole bladder thing. If so, I don’t know what hrt I’ll be able to tolerate.

Afraid I can’t answer you on that one as I have only ever used localised hrt.

I saw two women’s health physios several years ago now.  The second one did myofacial release and could tell me where I had some muscle tightening.  I went to first referred on from GP second one I self referred privately. 
 

[Minusminnie]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.

One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.

I started breathing exercises last month, maybe that might help.

Tension or stress does make things worse.  Distraction has always helped me where your mind goes off away elsewhere.

If it is the wee hitting the vestibule area that is sore some sort of barrier cream may help if you can tolerate it. I’ve used aproderm barrier cream at times on the vulva with some success.

Hope that you start to get some answers at your appointment in June.

[Wren]

SaraUK,
I've struggled a long time with symptoms throughout the whole pelvic floor.  My first obvious symptom was urgency/frequency and started after a stressful event.  The burning and soreness followed that.  I have had painful spasms as well though not often.  Having the condition itself is stressful and so the tension thing makes sense to me.

VA treatment doesn't stop the burning - I'm no different with that symptom on or off it - but I am going to continue as it helps the atrophy.  Any water-based stuff on the vulva just stings because the skin is so dry.  I need a suitable oil-based moisturiser to protect from the wee and friction.  I also identify with the first thing in the morning thing and assume it's because the muscles relax whilst I'm asleep.
I asked for an NHS Womens Health Physio appointment but it never materialised.   You could try asking your GP if you could get an NHS one.  We haven't one locally - NHS or private - so I was going to travel but as I saw a book mentioned in a newspaper article, I think, and I thought I'd give it a go.  Heal Pelvic Pain (not sure if I'm allowed to 'advertise' so won't put the author but a google brings it up anyway!).  Only got it yesterday.  It's very interesting and I identify with the symptoms.  I've started the relaxation exercises - going to persevere - and there are things to be mindful of doing throughout the day to relax.   If I had a face-to-face appointment I'm sure I'd have to do this 'homework' anyway.

Jilly Bond's YouTube videos on the same subject are interesting too.

I hope you find some relief.

[CLKD]

 

[SaraUK]

SaraUK,
I've struggled a long time with symptoms throughout the whole pelvic floor.  My first obvious symptom was urgency/frequency and started after a stressful event.  The burning and soreness followed that.  I have had painful spasms as well though not often.  Having the condition itself is stressful and so the tension thing makes sense to me.

VA treatment doesn't stop the burning - I'm no different with that symptom on or off it - but I am going to continue as it helps the atrophy.  Any water-based stuff on the vulva just stings because the skin is so dry.  I need a suitable oil-based moisturiser to protect from the wee and friction.  I also identify with the first thing in the morning thing and assume it's because the muscles relax whilst I'm asleep.
I asked for an NHS Womens Health Physio appointment but it never materialised.   You could try asking your GP if you could get an NHS one.  We haven't one locally - NHS or private - so I was going to travel but as I saw a book mentioned in a newspaper article, I think, and I thought I'd give it a go.  Heal Pelvic Pain (not sure if I'm allowed to 'advertise' so won't put the author but a google brings it up anyway!).  Only got it yesterday.  It's very interesting and I identify with the symptoms.  I've started the relaxation exercises - going to persevere - and there are things to be mindful of doing throughout the day to relax.   If I had a face-to-face appointment I'm sure I'd have to do this 'homework' anyway.

Jilly Bond's YouTube videos on the same subject are interesting too.

I hope you find some relief.

Thank you soooo much. Yes you sound very similar to me. I’ll look into the book, I’ll try anything right now.

I think all the appointments and prodding has sent my anxiety through the roof too.

[SaraUK]

SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.

Apologies if you've already mentioned it.

I second that.  Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too.  Think you already think that use of different products may have irritated.

Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.

One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.

I started breathing exercises last month, maybe that might help.

Tension or stress does make things worse.  Distraction has always helped me where your mind goes off away elsewhere.

If it is the wee hitting the vestibule area that is sore some sort of barrier cream may help if you can tolerate it. I’ve used aproderm barrier cream at times on the vulva with some success.

Hope that you start to get some answers at your appointment in June.

Thank you sooo much. I’ll look at trying the barrier cream too.

I’ll keep you posted on my ongoing journey x