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[YvonneW]

Hi Wren,

thank you so much for this. I’ll have a look. I came across an older forum chat on this forum and I’m currently making my way reading through all 87 pages! There are so many women going through the same thing and the knowledge shared is so useful! I’m literally so grateful for this place! 🥰

[Wrensong]

You're very welcome Yvonne.  Yes there's loads of helpful info in the many threads on this forum & a lot of support & empathy from members. 
I hope you'll find the podcast reassuring too.
W x

[YvonneW]

Wren,

After 4.5 years I honestly feel like I’m on the right path and it feels so good reading other women’s experience and advice. Just when you thought that you’ll have to live with this pain forever and that there’s no one who can help and understands your condition (mainly Urogynaecologist at the hospital who’s been dealing with me since the beginning). All tests such as cystoscopy, scans, X-rays came back fine and nothing helped, such as bladder installations, antidepressants for the pain etc 🥺 you just start feeling lost. Not to mention how it affects a relationship. Luckily my husband is very understanding and feels for me, but it’s just horrid feeling like this all day long 😭 and not being able to enjoy life really…

[Wrensong]

I know Yvonne, got the whole range of T shirts, but vaginal HRT is magical stuff & I do think in time you'll be so much better. 

[Ayesha]

I'll also add that in the BSSM link above there is a list of all the treatments available, its worth a read as well as being very educational.

[YvonneW]

Ayesha - thank you, I’ll have a look 😌

Wren - I’m currently watching the video on YouTube and Dr. Newson mentions Intrarosa being better? Do you have any knowledge regarding this?

[juliaC]

You have my sympathies.  I have urethral burning.  I'm more comfortable before a wee than after it.  I often feel like staying there and keep trying again and again.

I had this from age 27 though.  Told it was urethral syndrome.  I told the doctor I was worried about urine in the urethra leaking out, but I didn't have bladder urgency or anything, so I was only worried about a few drops of urine that felt like were stuck in the tube.  Nothing ever leaked out, just very uncomfortable.  After a while it would go away, until next time. 

I asked for oestrogen cream then but I remember the doctor's words, she said at my age (then) I'd be 'dripping in oestrogen.'  What a strange thing to say to someone with the problems described and the associated worry.

These days I do my best to ignore it, but while it's not painful or anything, it's very hard to ignore.

[YvonneW]

Hi Julia,

Thank you for your kind message and omg, I’m so sorry that you’re dealing with this since such a young age 🥺
You’re saying it’s not burning anymore, are you still using anything for it? I literally can not imagine to live like this for the rest of my life and not finding the perfect treatment for me. This forum really helps me though as for the first time in 4.5 years I see that there are so many other women out there having the exact same thing or at least similar. It’s hard when even the specialists at the hospital don’t really seem to know what it is so they just tell you it’s interstitial cystitis 😢

[Mary G]

Sorry to hear you are suffering but urethra burning very often doesn't have a cause.  Mine started when I was in my late 20s and I've never been the same since.  It was caused by a latex cap and spermicidal gel which was OK at first and then I suddenly noticed a burning sensation and it was all downhill from then.  I constantly had a burning sensation and felt like I needed to empty my bladder about 100 times a day.  I was tested for everything and of course it all came back clear.  I was up all night once with constant burning and urination and I was in such a bad state I had to call the doctor out which you could still do in the 1990s.

The only thing that ever worked to relieve the burning for me was a product called Azo (phenazopyridine) which dyes your urine orange and brings down the acidity.

I still have urethra burning from time to time and I always will but it's nowhere near as bad as it was.  It does mean I can't use vaginal oestrogen because that causes a major flare up but I'm on two pumps of Oestrogel every day which I hope is sufficient for keeping the bladder healthy.

I think you can buy Azo online.

[YvonneW]

Mary G,

thank you so much for your message.
I’m so sorry to hear about your suffering with a painful urethra, that’s really awful 🥺
I wonder what it exactly is in my case then, but for now I’m thinking it’s menopause related. I’ll definitely keep your advice in mind though in case my current treatment doesn’t work. I’ve read it can take many months to show improvement. Fingers crossed!