Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: SusanMA on August 19, 2020, 04:48:09 PM
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Hi all
I wanted ask your advice re oestrogen pessaries for urinary symptoms. I have IC and my main problem is constant urethral burning , it is very painful and been off work with it since May :(
I am post menopausal and been prescribed Imvaggis, has anyone used this or another oestrogen cream or pessary for bladder issues ? Be helpful to know how long it took to make a difference. Am planning to start it tonight !
Thanks very much
Susan
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i'm using vagifem, just waiting to see if it works????
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What's IC?
What's Imvaggis? With 'vagifem' and 'ovestin' it is suggested using every night for 2 weeks or more if symptoms fail to ease, then several times a week as necessary. A pain relief can be useful too.
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Thanks for replies
Have heard Vagifem can help but my specialist recommended Imvaggis.
IC is interstitial cystitis, or also known as Painful Bladder Syndrome
Some practitioners and patients believe IC is actually an embedded infection rather than an inflammatory condition. The symptoms are same as UTI but constant ! It’s a horrid thing to deal with and the urethral burning which I have all the time is particularly hard to manage. The use of oestrogen is to help the health of tissues which become more fragile post menopause.
I understand there was a thread on burning , but couldn’t find it :(
Can anyone point me where to find it ?
Thanks
Susan x
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I can't help on this as yet, but I'm so glad someone posted about this. I've had what they call 'urethral syndrome' for about 20 years now. I was going to be tested for IC, but that was 20 years ago and I didn't want to be put under anaesthetic back then for the biopsy. They did look inside the bladder and said no sign as yet, but that it didn't mean I wouldn't develop it in view of my symptoms. Well, symptoms haven't got worse but .................well what's relevant here is the urethral burning. Mine is such that after peeing I never quite know if I'm finished. The flow stops but I can easily 'bring on' more of it and I don't have urine retention. They said it's purely that the tissues are irritated down there and in a healthy person there would no longer be a 'signal' to keep trying to urinate. In the end I have to mentally switch it off.
I have noticed since taking vagifem (recently) that the symptoms are a little better (this is interesting because I asked for oestrogen cream or something in my mid twenties to see if that would ease it but the doctor at the time said 'at this age you are dripping in oestrogen already,' and she may have been right but I wondered if perhaps my urethra just needed more or something. Also it is always worse just before my period and I guess that's lower oestrogen then?
I really hope these treatments help you.
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Thanks for your reply, yes when I had periods my pain was always worse before I bled but improved once period started then came back when bleeding finished. Glad to hear Vagifem is helping a bit , does sound like your symptoms are oestrogen related.
Can I ask when you first started using the Vagifem did it burn initially ? The Imvaggis did, started it last night and felt awful in my vagina , intense burning then that set of the urethra to burn even more than usual! Was horrified as hoped this would help things not make them worse! But guessing this maybe an initial side effect that doesn’t always happen when used to it ? Does say you can get irritation in listed side effects but this was more than irritation it was burning awfully ! Eventually it subsided enough for me to sleep and now back to my normal level of urethral burning. I know I will need to use it for a while before seeing any results but curious to know if others had similar experiences
(May start anyone thread re side effects of pessaries but would welcome any feedback on this one.)
Thanks very much
Susan x
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Susan, I would hope that it's an initial effect of your tissues just not being used to it, but I don't know. When I first used the vagifem, this is going to sound weird, but I felt like all my insides were swelling up and as if there was a 'blockage' in the vagina. Someone said it might just be that the tissues were depleted of oestrogen so this is just a sensation. I persevered and I don't have that now, I think it stopped after a few days break and then continuing. I don't take vagifem every day because I think it makes me slightly more prone to migraine, nothing major, and also notice I have more hair coming away on the brush.....so I'm being cautious. Actual urethral burning? Nothing specific, though I'm sure there was some discomfort at first, but not anything I remember....more the feeling of swelling, to the point where I thought I might be allergic ;D But I do think that overall, awareness of the urethra is slightly less with using vagifem now. Hope that helps a bit.
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Thanks very Kara, or is it Shannon ? Wasn’t sure which was your first name, apologies!
I tried half a pessary of Imvaggis last night, same problem of strong burning. Phoned company who make it but they said they can’t advise, very frustrating!
GP has suggested Vagifem , sounds like it didn’t cause burning for you , so maybe worth giving it a go.
Good to hear it has helped a bit,despite strange side effects you had at first, is this all you use for the urethral burning or are you taking anything else ?
Thanks
Susan
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Because the vaginal tissues are dry and thin, anything inserted is likely to cause stinging :o so advice usually is to insert as deeply as is comfortable. Do read the vaginal atrophy threads, bladder threads as well as the 'sylc' and - can't remember the other one :-\. Some find that using these products ah! 'yes' along side VA treatment is helpful in easing the symptoms.
Let us know you get on.
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Thanks have swapped to Vagifem as GP and pharmacist both thought I was having an allergic reaction to the Imvaggis , the burning from is was very severe and started as soon as I put it in, even before I had pushed up, so there must be ingredients in it that don’t suit me. I contacted the company that make it to report my reaction , they weren’t that helpful tbh but did record that I had reacted to it. Am annoyed that was not warned that this could happen by the private specialist who prescribed it , it was an expensive consultation and though she wasn’t to know I would react to it , be surprised if this has happened before.
How long should I use theVagifem for to see if it helps ? I have heard Estriol can be good but wanted to give the Vagifem a try first , especially as it causes no burning atal! And just to be clear re my use of oestrogen it is purely for urethral burning, I don’t have any vagina symptoms. Despite being diagnosed with BV I have no discharge or discomfort there, it’s just in the urethra which is constant and horrendous to be honest !
Thanks very much
Susan
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4-ever. The idea is to insert every night for 2-3 weeks then as often as necessary. Many cope with every 3rd and 5th night, some require it nightly. You may find that there is stinging for about 2/3 nights as the area will be dry. Gentle insertion every night should ease those feelings.
Where you treated for BV? I don't have vaginal symptoms per se, other than a very tender spot which hurts when touched. My symptoms were repeated urine infection-type symptoms of repeated need to pee - ABs relieved symptoms but won't replace oestrogen which is what 'vagifem' attempts to do.
Read our various threads ::) - make notes ;)
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Thanks, didn’t realise have to take it forever!!
Would you say the Vagifem has helped your bladder symptoms a lot ?
Have had headaches and constipation since starting it, is that normal? Was bit concerned to read on leaflet that constipation is linked to high calcium. I have not used hormones before or only briefly when tried Overstin in 2013 which increased my symptoms. In my 20’s I did also try the pill but didn’t feel good on it so stopped. The headaches and constipation make me wonder if I am just not good generally with hormone medication, but so want to see if oestrogen can help!
I know there are other pessaries or creams to try , it’s just not knowing how long to try this one before trying an alternative, any thoughts gratefully received : )
Thanks
Susan x
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SusanMA, it can take a while to work, probably some weeks or even months. Think of it as a nutrient for the the urogenital area, with the tissues gradually improving as the layers of cells renew. Treatment is forever, as it is like watering a plant, if you stop the plant will die.
JP x
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Thanks very much JP , which oestrogen do you use? Understand I need to do it a while for it to work but just wondering how I know which one is best ? Vagifem I know does help some folk but not everyone, when should I consider trying a different one if Vagifem no tworking? Reason I am anxious re time is currently off sick from work due to the IC and will go to half pay in a couple of months. Plus am considering long term AB’s if have positive result from bacteria broth test ( only waiting list for this with a specialist clinic ) Would however prefer not to use anti biotics , hoping oestrogen will mean don’t have to!
Susan
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Personally I use Vagifem nightly, and Estriol Cream externally at least every other night. I would say to give it at least a couple of months. It's impossible to say which treatment is best as some people like Ovestin, some Vagifem, and the Estring also has its fans. If you are very dry internally Ovestin may be better.
I am sorry to hear about your chronic UTI. I have the same and am on long term ABs (Macrobid) and Hiprex. So far it's going OK. Who are you waiting to see? Broth test sounds like Dr Anderson. I am with Prof Malone Lee's Harley Street clinic.
Best wishes,
JP x
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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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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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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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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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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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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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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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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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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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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