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[YvonneW]

Hi everyone, I hope that someone is able to help me as I really don’t know what else to do.

I’ve been having urethral burning and that’s constant during the day and gets worse after I need a wee for the last 4.5 years. I had endless appointments and tests at the hospital but no one really knows where the burning is coming from? I don’t have pain anywhere else, it’s just urethral burning. Constant. Like a UTI without having a UTI. They diagnosed me with IC and I’m currently taking Amitriptyline for that. I also had a prolapse front and back which I had surgery for last year. But no matter what, the burning is still there and it hasn’t changed. I was recently prescribed Estradiol pessaries (vaginal tablets) and I was told to also put Estradiol cream on the outside where the urethra is, so far no changes and it’s been 4 weeks.

Has anyone else got any idea what else I could do or how long this could take to maybe feel a change in the burning sensation? I just need and want this burning to stop, it’s affecting my daily activities and mood at times 😭

[Ayesha]

Your issues are more complex than the usual symptoms of GSM but topical oestrogen treatment can take up to four months to take effect. It could be just that, waiting for the treatment to work.
Hopefully others with more knowledge of your symptoms will come along with advice.

[YvonneW]

Hi Ayesha, thank you so much for your reply! 😊 This gives me hope knowing it could take months to work.

[Wrensong]

Hello YvonneW &
I was diagnosed with IC on cystoscopy 20 years ago.  You have my sympathy as when the discomfort's bad it's hard to think of anything else.   I was prescribed nothing for it for the first 10 years & had to manage it with diet & lifestyle measures alone until starting HRT several years postmenopause.  As Ayesha says, topical HRT can take quite a while to work its magic on the GU tract, so please don't lose hope.

I use estradiol pessaries with a thin smear of the weaker estriol cream (0.01%) externally, as well as systemic HRT.  I also use Sylk or Yes WB to help the estradiol pessaries adhere to the vaginal walls.  This combination, together with the other standard IC diet & lifestyle management strategies helps me keep flares to a minimum & means I've been able to avoid the bladder instillations sometimes prescribed for IC.

There are quite a few IC related threads on the forum, so if it might help to read of others' experiences & you have time, you could do a search.

I hope you soon start to feel a reassuring improvement that will encourage you to persevere.
Wx

[CLKD]

Please remind me: What's "IC" mean 

[Wrensong]

Interstitial Cystitis, CLKD.

[sheila99]

A painful urethra was my biggest va problem (just the end of it, not all the way up). Do you have the 0.1% estriol cream or the 0.01%? The 0.1 is better as it's stronger and I'd suggest you make sure it's dry every time you wee by dabbing not rubbing and apply cream every time it gets wet. Try it for a couple of weeks and see if it's any different. I didn't have vaginal soreness, it was just the end of the urethra and a dry patch on the labia. Is yours painful all the way up or just the end?

[CLKD]

 

[YvonneW]

Hi Wrensong and Sheila99,

Thank you both so much for the response, this is really so helpful and reassuring. I’ve been struggling for so long that I just want something to work. I’m honestly so glad to hear that it can take months for the creme to work. I just double checked, it was 0.01%. I’m not having any creme at the moment because the GP deleted it off my repeat medication list. I contacted them this morning and hopefully get it back on track. I’ll mention the 0.1% Estradiol, I didn’t know there was a stronger one. The vaginal tablets and creme are still something new to me. Something I didn’t know before. Also, no one ever mentioned that this could be menopause related. I’m 50 and have been on contraception for years so I never connected this to the menopause but reading some posts and through research, I found myself reading all these urethra pain posts that could be connected to the menopause and/or IC. I’m shocked that no doctor ever mentioned this to me before. I’m so grateful for any response or help as I clearly have to find the right treatment myself, doctors seem to not know…😩

[YvonneW]

PS: @Sheila99

Hey! The burning is always at the end of my urethra. Sometimes it feels like it’s the entire urethra but I would still say it’s always the end 😵‍💫

[Wrensong]

Yvonne, there are a couple of links here about GSM you may not have seen that might be helpful.

https://bssm.org.uk/wp-content/uploads/2024/03/BSSM-Position-statement-for-management-of-genitourinary-syndrome-of-the-menopause-GSM.pdf

https://thebms.org.uk/wp-content/uploads/2024/04/09-BMS-ConsensusStatement-Urogenital-atrophy-MARCH2024-A.pdf

Just to be clear, if you need to speak to a medic about the 2 creams, the form of oestrogen they contain is Estriol which is weaker than the Estradiol in Vagifem & its equivalents.    A lot of new terminology we all wish we'd never needed to get to grips with in menopause!  Do push to have the cream reinstated if there's any resistance to your having both cream & pessaries.  I find it makes such a difference to comfort.

W x

P.S. stress that you need the cream for external use as sometimes it's declined under the mistaken belief patients are doubling up using it internally in the same way as estradiol pessaries.  Not surprising, given the creams come with applicators for internal use as an alternative to estradiol pessaries.

[YvonneW]

Hi Wrensong,

thank you again so much for your long and detailed reply, I really appreciate it! I’m so glad I came across this forum, for some reason I have a lot of hope now…that it can get sorted! I have saved those links and I will have a read.  I will definitely stress about the cream for external use, the gynaecologist at the hospital said to use both - pessary and cream - long term. Thank you for clarifying the names as well, I did muddle it up earlier (still so new to this, even though I’ve been suffering for 4.5 years with this now).

So just to confirm, my pessary says Estradiol 10micrograms on the packet and the cream is called Estriol? I haven’t got the old tube anymore and currently waiting for the doctor to prescribe it, but it was a small purple tube with white writing on it saying Estriol 1mg/15mg tube?

[Ayesha]

Don't stress or overthink the two treatments, just make good use of them. The pessary is Estradiol and the cream Estriol, both common treatments for GSM.

[YvonneW]

Hi Ayesha,

thank you so much for your response. So grateful for this place. I felt so alone with this for 4.5 long years and no one understood what this is and now I come here and read so many similar posts! Phew! 🥺

[Wrensong]

Dr Louise Newson has recently done another good podcast on Youtube.  It's called hormones and urinary symptoms in women.  She covers IC, UTIs, pelvic floor health & more & mentions that it can take months for vaginal HRT to take full effect.  Well worth a listen.

https://www.youtube.com/watch?v=epMwOzhdBLA
W x