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Author Topic: Oestrogen for Urethral Burning  (Read 5881 times)

SusanMA

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Re: Oestrogen for Urethral Burning
« Reply #15 on: August 25, 2020, 09:48:35 AM »

Thanks JP
I tried Ovestin a few years ago but caused awful burning for me , it increased the urethral pain. I don’t have any vagina symptoms I am aware of, just constant urethral burning pain. I have been diagnosed with BV but have no discharge or discomfort in the vagina. I have heard of Estriol cream but not tried it, should I ask for this in addition to the Vagifem? Or wait till see if Vagifem works on its own? Find it very confusing and don’t feel GP’s are much help. I have been advised by my nutritionist to add in progesterone when using oestrogen but I had thought this was unnecessary when using topical oestrogen. I am seeing Dr A, broth test due next month. Be great to talk to you sometime re your experience of using long term AB’s if you’d be up for that, as feeling quite anxious about trying them . My IC started after a bad reaction to Ciprofloxacin.
Good to hear going ok for you, what were/ are your main symptoms?
Susan x
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Joaniepat

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Re: Oestrogen for Urethral Burning
« Reply #16 on: August 25, 2020, 08:31:58 PM »

You could ask for Estriol Cream to apply externally, especially around the urethra. You never know, it might help. I didn't get on too well with Ovestin the last time I tried it as it stung, so that's why I asked for the other cream and it's been fine. You are correct that progesterone is not needed if you are only using local oestrogen.

I have only been in treatment with the Prof for 5 months, so I guess there is still a way to go yet. I was started on Cephalexin, which is what they seem to start most patients with, but I developed horrendous thrush a few days in. They halved the dose, and then at my 3 month check up switched me to nitrofurantoin (Macrobid), which I was told is less likely to bring on thrush. So far, so good. I have not had any real flare ups of symptoms since starting treatment, and no adverse reactions to the ABs apart from the candida on the first one. My original symptoms were repeated UTIs, which started at about the same time I became aware that I had VA.

Do you follow Jane Lewis (maryjane on here) on Instagram? She did a video interview with Dr Anderson not long ago. Might be worth a watch, as all Jane's videos are excellent. She has done several on UTI matters, and how NHS testing is not fit for purpose.

I am sure you will be in good hands with Dr Anderson. I know the thought of long term ABs is a bit scarey, but I'm glad I took the plunge. Will be interested to hear how you get on when your appointment comes round.

Best wishes,
JP x

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SusanMA

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Re: Oestrogen for Urethral Burning
« Reply #17 on: August 26, 2020, 11:57:25 AM »

Thanks very much JP
Will ask Dr Anderson about the estriol, I have a nice GP but he isn’t very knowledgeable re HRT or IC. Feel bit confused about whether doing oestrogen together with treatment for infection may make it unclear what it helping! Do my broth test next week , so potentially could be starting treatment for an embedded infection ( if found ! ) fairly soon. But only been on Vagifem a week so very early days with it. Do you think doing the two together is unwise ? Did you start AB’s around same time as oestrogen?
Had asked Dr Anderson whether to wait till test and then decide re the oestrogen but she said was up to me. That felt hard as I have no idea what might help more. I was hoping for more guidance !
Fantastic you’re not having any flares up since starting treatment, did the AB’s work quite quickly? I don’t have regular UTI’s just persistent urethral pain/ burning and occasional bladder pain , no frequency or urgency. I always thought of my symptoms as a chronic inflammation in the bladder not linked to infection, more auto immune, but now coming to wonder if it has just been a very long lasting infection! I have had periods of remission but when am experiencing symptoms they are pretty much constant , as it has been this last 18 months. I don’t have any VA symptoms as such, though was diagnosed with BV ( again no symptoms )
Hoping oestrogen will help BV , which in turn hope will help uro symptoms.
Will look at for the videos by Jane, are they all on Instagram?
Thanks again for all the info and support
Susan xx
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Joaniepat

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Re: Oestrogen for Urethral Burning
« Reply #18 on: August 26, 2020, 09:07:04 PM »

Hi Susan,
As there are a lot of oestrogen receptors in the lower urinary tract, I think local oestrogen would work well alongside any other treatment. I'd say you were wise to start it. Also, if you do have BV, that indicates that all might not be well with the vaginal mucosa and the pH is out of whack, allowing the bad bacteria to predominate. Vagifem would help that, too. Lucky that you have no symptoms of BV. How did you come to be diagnosed with it?

I had several courses of ABs for UTIs,  plus one for BV, ever since I became aware of VA about 3 years ago. However, I was originally sent down the dermatological route for vulval soreness, and had to figure things out for myself. I got Vagifem in the end but think I already had a UTI that had become embedded by then. That was another thing I had to do my own research on, so last March decided to go and see a member of the Prof's team. As you probably know, his approach is a bit different from Dr A's, and they diagnose by symptoms and microscopic urinalysis (no cultures). It was difficult to decide whether to go with Dr A or the Prof at the time!

All Jane Lewis's videos are on her Instagram page. Defo worth following.

Best wishes,
JP x
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SusanMA

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Re: Oestrogen for Urethral Burning
« Reply #19 on: August 27, 2020, 10:37:08 AM »

Thanks very much JP
Yes having thought about it more  having oestrogen ongoing does seem a good idea, and if my broth test shows bacteria then can add in treatment for that alongside it . I highly suspect they will find bacteria, am more and more convinced IC is often an embedded infection. Had never believed this theory for such along while , but as I research it now it makes total sense. I was advised by bladder health UK to get some urine strips to test my urine and there was a high white blood cell count when I tested it a couple of days ago. I have for such a long time believed I had an inflammatory condition that I just had to live with but now really question that .......... be so interesting to see what test shows up!
I was diagnosed with the BV via a swab test , which I was advised to do by the nutritionist. It was with a private company called Invivo. They found 3 bacteria and absolutely none of the good bacteria! The nutritionist put me on probiotics, orally and vagina pessaries. I decided I wanted to add in oestrogen which the nutritionist agreed with. BHU recommended Dr Anderson as someone to consult with re hormones and then it was looking into Dr A’s approach that led me to finding out more about broth test , plus being diagnosed with BV had made me consider role of bacteria more.  I have had one appointment with her in her menopause clinic and on waiting list for her bladder clinic. The have sent me sample kit and the lab reopens after summer break next week, after sending sample I will need to wait for an appointment with Dr A to review results and discuss treatment. Her PA said it will be a date in September so doesn’t feel too far away now. I had considered Prof but as I had heard he didn’t really believe in hormone connection or in the use of supplements I thought Dr A maybe better bet for me. Heard both are good though and know Prof’s team have helped many people get better. Did the AB treatment from Prof’s team work quite quickly ?
Watched the Jane Lewis video with Dr A, thank you , yes found it on Instagram. The one with Joanne who set up the FB group for embedded infections was v good too. Both helped me feel I am on the right route now, getting tested for bacteria .....and though have been nervous about long term antibiotics, feel much more comfortable with idea if they can rid me of the cause of this awful , constant pain!
Thanks again for your support and helpful info.
Susan x 
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sorbet

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Re: Oestrogen for Urethral Burning
« Reply #20 on: January 29, 2021, 08:40:55 AM »

Hi hope your symptoms have improved.
I began having the awful burning peri menopause and after countless antibiotics for UTI’s I was prescribed Vagifem. I’ve found using the Vagifem difficult to use due to prolapsed bladder . Sometimes I have to stand to empty my bladder. What I don’t understand , many years later and now post menopause, is why antibiotics do relieve the burning for a few weeks before it returns with a vengeance. I’ve contacted Dr A , as I can’t stand this burning . Best wishes x
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CLKD

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Re: Oestrogen for Urethral Burning
« Reply #21 on: January 29, 2021, 08:53:57 AM »

Because ABs are a relaxant?

There are other preparations to try, 'ovestin' works well for me.  How is the prolapse being treated sorbet? 
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Joaniepat

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Re: Oestrogen for Urethral Burning
« Reply #22 on: January 29, 2021, 09:28:27 AM »

Good move to contact Dr A. The burning returns because the UTI is embedded, so hasn't cleared. I'm with the Prof's clinic at Harley Street and been on ABs for ten months. It seems to be going well, although ten months isn't long compared to some people.

Best wishes,
JP x
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sorbet

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Re: Oestrogen for Urethral Burning
« Reply #23 on: January 30, 2021, 02:12:42 PM »

Because ABs are a relaxant?

There are other preparations to try, 'ovestin' works well for me.  How is the prolapse being treated sorbet?

I’m going to get the prolapses  sorted when there’s some normality . I did the unthinkable again and picked my grandson up .
I have thrush now so trying probiotics, I’m allergic to the anti fungal creams and pessaries. x
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sorbet

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Re: Oestrogen for Urethral Burning
« Reply #24 on: January 30, 2021, 02:16:06 PM »

Thank you JP , I’m glad you’re feeling an improvement. I’ve emailed her so looking forward to seeing her as soon as possible. She may be able to help with all of my menopause problems including prolapse symptoms. Take care x
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