UTI, soreness - are my bike riding days over?

[mutterphore]

I'm nearly 60 and post-menopausal for 5 years (luckily sailed through that process with no difficulties). Unfortunately, I've had my first UTI for the last 8 weeks+ with incredibly and unremitting soreness too and am on my third set of antibiotics.

As a regular bike-rider - usually around 80 miles a week - I can't even imagine the possibility now of getting back on my bike as the soreness is so awful, all the time. Will I ever cycle again? It's my main source of exercise and one of my greatest pleasures.

All the creams the GP has prescribed so far haven't worked and in fact I'm slightly worried they may have made things worse. I've tried Canestan Hydrocortisone (although I don't actually have any of the usual thrush symptoms - eg no itchiness and no discharge) which I think exacerbated the soreness, Replens - which definitely made it worse and Sylk, which sort of relieves it a tiny bit for a few seconds but doesn't go anywhere near relieving the soreness.

As I had no problems at all before all this, I'm reluctant to try topical HRT.

Wise women, can you suggest something for immediate relief from the soreness - ideally a safe, natural product, as I think all these creams have just made it worse?

Has anyone suffered similarly but then the UTI and the soreness gone away completely without further more drastic interventions. Finally, if there are any other post-menopausal cyclists on here, can you give me hope for future bike rides?

Thanks for the update mutterphore and I'm glad to hear you have been getting some relief, although things sound less than ideal still. I understand your reluctance to go against medical advice but I also wonder if it might be worth consulting someone with more experience of menopause issues (or possibly even talking to your pharmacist about the safety of topical oestrogen?). I can only relate my own experience, with Vagirux rather than Ovestin. As I mentioned previously, I have been using it for about 5 years now. After the initial two-week 'loading' period, I find I need to use it every 3 days (cf twice a week). I also find that I have to repeat the two-week daily loading sometimes, probably about once a year, when I feel things getting uncomfortable again; it was mentioned that I might need to do this by the urogynae consultant I saw at the beginning who said that it was perfectly safe to do so.

From your description it does sound as if Ovestin is the key to your relief, and as Jingling says that your symptoms were so severe that you need "more for longer" (although I say that as someone with no medical qualifications!). Good luck and I hope that you will be able to get back on your bike in the not-too-distant future.

As others have recommended; Ovestin cream is what you need and definitely research HRT. The benefits far outweigh the risks IMHO (bones and cardiovascular mainly)

When I tried to go down to twice a week my bladder symptoms came back immediately. I restarted the loading dose (at the time was on both Vagifem and Ovestin) for three weeks and then tried to go down to alternate nights. They came back again. My GP was happy for me to use it nightly from then on (in fact had presribed loads of it initially anyway). I am now using Blissel (instead of Ovestin) externally alternate nights but still Vagifem every night.

Have you contacted the consultant to say your symptoms have come back? If so and they are sticking to twice a week then I think that might be against NICE guidelines about topical oestro for bladder which IIRC (don't have them to hand) state to prescribe the lowest effective dose. Twice weekly is clearly not effective for you at the moment. It may be later on once you're fully oestrogenised but you're obviosuly not there yet and no real reason why you should be after a few weeks.

Assuming they have written to the GP saying only twice a week I would try and find a private menopause clinic as the GP probably won't go against what the consultant said unless they are knowledgable enough to know it's not always enough.

The dryness/soreness may take longer to resolve - possibly up to a year.

@Nixer I think the OP mentioned she was seeing a private consultant.

Thanks for all this very helpful input. The overall feedback is that I shouldn't feel too overly cautious using Ovestin. The private private consultant is supposed to be very good BTW with menopausal issues but is known for her conservative approach. I'm able to email her with questions but then it might be a while before she gets back to me via her PA.

I think at the very least, I'm prepared to use Ovestin once every 3 days rather than alternate every 3 days with every 4 days. By the end of the first three weeks, when I'd gone down to once every two days, I was just beginning to imagine the possibility of cycling again. So it must have been working. It just feels like waiting for 3 days before reapplying is the absolute limit for me and anything longer might just set me back to where I began.

Having had as a starting point that I didn't want to use anything at all and never took any kind of medication across my entire life and menopause, I've come a long way to thinking life's too short and that quality of life is now more important than trusting 'nature' to resolve things. I just want at least the next 10 years to be ones where I can cycle and exercise without pain and further UTIs and the loss of this in my life, across the last 4 months, has been so awful. I'm fatter, very unfit and my main source of pleasure has gone. So applying a bit more Ovestin, more frequently, seems wise.

I got a further prescription for Ovestin via the private GP as the private consultant couldn't wouldn't give me one. This was only to maintain the protocol she'd recommended in the first place. So I do now have a few tubes of Ovestin and am not worried about running out.

I don't see the private consultant again until May and am slightly concerned she might suggest trialling coming off all Ovestin then. I'm still on prophylactic antibiotics, currently on the first type and will have to start the next type (which the GP said was an 'unusual choice and more used for generic infections than UTIs') shortly. I don't know to what extent antibiotics are helping keep UTIs at bay but the consultant felt it was unlikely I'd need to continue with these past 3 months.

I really value all the help and support from all of you on here as the consultant and the GP are both younger women who haven't actually had to face the ageing process and VA/ UTIs themselves, where you have. So you know just how demoralising and annoying this is. Thanks so much for all the advice.

TBH @mutterphore I'd seriously think about whether you want to carry on with the consultant. The AntiBs won't be doing you any favours and will be doing a lot of damage to your gut health making you more at risk for thrush and a whole load of other things. It can take months to get the gut back to normal after long term ABs.

Your consultant seems to be a bit of an outlier in her approach. If you do see her again, I'd question her on why she is so adverse to using a little bit more Ovestin. She needs to give her rationale for this.
Is she worried about the uterine lining? Because if she was, she ought to acknowledge that she could prescribe a short course of progestin to control it.
(Even though this has now been shown to be unnecessary.)

Can't you just now go back to your GP for repeat prescriptions on the basis it's helped? It's not really a 'consultant' issue as it's so common and so easy to treat, if the dose is right.

I don't see the private consultant again until May and am slightly concerned she might suggest trialling coming off all Ovestin then.

If she was to suggest that, it shows she really doesn't know her stuff.
The guidance says it's to be used for as long as necessary, which is for life in many women. Stopping will just see a return of symptoms.

@JinglingSpringbells I know she's seeing a private consultant, I mentioned a private menopause clinic because I think they are more likely to be willing to prescribe sufficient Ovestin than the crap consultant the OP is currently seeing. I'm assuming the consultant hasn't prescribed enough for nightly use so the OP will run out unless she just uses twice weekly. Although I have just seen the OP's update saying she's got a few tubes from the private GP.

This consultant sounds like a waste of money to me. Find someone who understands that women need topical oestrogen for the rest of their life, and that some need it every night.

Thanks again for all the advice. The consultant is highly recommended and known for starting off with a conservative approach but is probably more flexible depending on the individual. Presumably, she just wanted to see how I got on with the least dose of Ovestin, knowing my starting point had been not even wanting to try it!

She did say it was fine to do two weeks of nightly use at the start, rather than just the one week initially prescribed, after I'd asked this a few weeks ago and I've emailed her again about using it more than twice a week now, emphasising that it seemed to be beginning to work quite well, by the end of the first two to three weeks of more frequent use.

She was probably wanting to see how things went for the first 3 months but I've now updated her. I'm just not sure what her response will be when I see her again in May. So I think it'll be helpful for her to know that the more Ovestin (within limits) the better, for me so far.

I've got plenty of Ovestin via the GP prescription, so should be OK getting further prescriptions from her going forward.

It's really helpful to hear from everyone here about the range of what is considered 'normal' treatment and it gives me confidence to be more flexible myself, whatever the consultant says.

Op, I would just use the amount that suits you, and disregard everything the consultant says. I had one consultant tell me that women only need vaginal estrogen for 6 weeks and after that they will be better. A lot of them know absolutely nothing.

The consultant is highly recommended and known for starting off with a conservative approach but is probably more flexible depending on the individual

This is what worries me.

I'd steer clear of any dr who had a conservative approach to vaginal estrogen.

There is no 'conservative approach' with Ovestin. It is incredibly weak.

The dose is 14 days, every day, then as much as needed thereafter to keep you comfortable.

Consultants who know their stuff are usually less conservative, as they know the level of risk.

I really don't understand this level of angst over Ovestin! Its actually quite frustrating to read. Just use as much as you want!

Thanks again for your advice. I'm not used to going against medical advice but then I'm also not used to having any medical intervention and so have assumed that they're the experts. I can see what you all mean though about Ovestin being very benign, albeit still a prescription drug in my neck of the woods, though I think some of you have said it's OTT? Anyway, I'm taking on board what people are saying and value your collective wisdom.

My consultant got back to me just to reiterate the original protocol, ie I should now be down to only twice a week application of Ovestin. She said be patient and things should improve further over time.

Following advice on here, however, I've been still applying Ovestin four times a week but I've never gone back to the improved state I was in after the two weeks loading dose on a nightly basis.

Right now I'm in a really bad state with the return of UTI symptoms of urgency/ pain along with local soreness and dryness. The UTI pain and constant sensation I need to urinate is as bad as it was at the beginning. I'm not sure if I've now got another infection or if this is just a side effect of using less Ovestin. I've emailed the consultant again asking for advice.

I'm wondering if I got desensitised to the prophylactic antibiotic I've been taking for the last 4 weeks, although tonight I switch to a different type anyway. Not sure if I should take more than the prophylactic dose of the antibiotic or whether to bung in more Ovestin or what.

I feel very demoralised as I thought by now I'd be back to normal and out cycling and exercising again and instead, I can barely do anything to distract myself from the pain and discomfort. Tomorrow, I've got to drive a 7+ hour round trip to pick up DS from university and am dreading this as there's never anywhere easy to stop on the way.

I just don't know if I've used too much Ovestin or too little or have an infection or what. It's now more than 4 months since all this started and I feel no further forward. Has this happened to anyone else the minute they reduced Ovestin use?

What are you using on the days in between the Ovestin? I have to use Replens on the days I don’t use the Ovestin (and I use the Ovestin 3 times a week on the advice of both my private and nhs specialist). If I don’t do that I end up very sore again. Replens comes in two forms - either in a tube with an applicator like Ovestin or in pre filled squeezy tubes you insert and squeeze. Try and get the one with the tube and the applicator and you can then use it externally as well just like Ovestin. When you first start using it you might get some white clumps coming out of you like toilet paper scrunched up (!!) sounds very odd but it’s actually just the dead skin cells shedding and if you keep going with it it stops. It has really helped me. You can have it prescribed or buy it online. It is hormone free. You will still need the Ovestin as well.

I had very similar issues to you - and I know I’ve commented on this thread earlier but I can’t find my post so can’t remember what I’ve said now - but essentially I’ve had the same issues since I was 14 and have been on antibiotics ever since then but once I reached 40s they seemed to stop working. I had a cystoscopy last month and they took some biopsies and found I have inflammation- so essentially no infection but intercystinal cystitis. So they have put me on amitriptyline and solifenacin. These have really helped me along with the Ovestin and HRT and Replens. You need to keep pushing for tests etc.

@Xrays many thanks for your helpful reply. I did actually try Replens very early on when this started, as recommended by my GP but it seemed to make everything worse. Since then, I've used a tiny amount of Sylk for local dryness but I sort of feel I need something more oily than watery.

My consultant got back to me and has said it can't possibly be the lack of Ovestin that has made my UTI type symptoms worse nor the dryness. She said I should buy some D-Mannose which I will when I get the chance. She also said I'd need to get another urine test done at the GP so this has meant I'm going to have pay another huge amount of money and the first available private GP appointment isn't until Wednesday anyway.

I got back to the consultant again and said I was worried that I'd have an untreated infection going on for the next 5 days as the tiny dose of antibiotic presumably won't shift a full blown infection. So she's said if I really want to, I can take the treatment dose of the next antibiotic for 3 days only and then revert to the prophylactic dose. I've just read the side effects of this next one though (Nitrofurantoin) and it mentions about dizziness and don't drive if this happens. So as I'm driving for 7 hours tomorrow, I don't think I'd better take the treatment dose just yet.

A while back, my GP prescribed something similar to solifenacin but as it seems to prevent urination and I wouldn't want to stop peeing out an infection, I didn't try it. Are there any specific reasons why inflammation - if that's what it is - will suddenly flare up? Might it be related to me having a nasty cold at the moment?

I just hate being on any drug at all to be honest and the thought of lifelong antibiotics even sounds horrendous. Poor you being on them since age 14.

I'm just getting my head around Ovestin but the consultant is really clear that I don't need any extra of this, yet it was the only thing that helped, when I was on the daily dose at first.

You have a few options, but to be honest, do you not think it might be better to talk to your dr face to face, rather than the emails between you? Should you book another appointment perhaps?

These things are often much better in person when you can dig a bit deeper into what she suggests. is the way she's working now- emails between consultations- the way she prefers to work?

If I were you, I'd ask why she is averse to remaining on a daily dose for longer when it was helping.

You say she keeps referring to the 'protocol' but as a consultant she ought to be able to explain why that dose exists and why she doesn't approve of exceeding it, rather than simply saying 'you can't exceed it'. That's the kind of non-explanation you'd expect from an inexperienced dr.

You'll have seen from the posts here that many women use it far more - under dr's guidance- than twice a week, so your consultant is a bit unusual. It is still your option to take control and do what you feel is best.

Antibiotics shouldn't be used unless you have an infection. They are liable to cause thrush which can cause more soreness/itching. Women on long term ABs are often advised to use probiotics.

Dr Newson, in her leaflet on VA, says it can take up to 3 months for an improvement.

She also says some women get on better with Vagifem compared to Ovestin and it can take a while to find the right one- BUT she does say persevere for 3 months before changing.

My consultant got back to me and has said it can't possibly be the lack of Ovestin that has made my UTI type symptoms worse nor the dryness.

I'm sorry but this and the other comments you have quoted make me have little faith in her.

In the early days of managing VA, symptoms can come and go. You've only been using Ovestin for a very short time.

I really think you ought to consider changing to another dr.

Sorry!

Sorry- just one last suggestion. You say you had been 'applying' Ovestin 4 x a week.

Are you using the applicator and inserting the cream, or just smearing it on externally?

It does need inserting, because the estrogen moves through the vaginal walls into the bladder walls and helps thicken them.

This makes me sad. When you were getting an adequate dose of oestrogen your longstanding and distressing symptoms began to improve, and now for no adequate reason, you are being told not to use an effective dose.

It has taken time for your tissues to become damaged and irritated, and it will take time (and sufficient oestrogen) for them to repair themselves to the point that you can seek the lowest effective dose. That is not the priority just now - saving your comfort and bladder function are surely the priority.

I am picking up an element of self sabotage in your post 😊 I say that kindly. It seems like you’re not giving anything long enough to work and are so worried about side effects that some things you’re not even prepared to try. Unfortunately most things have side effects, but you have to weigh up the benefits vs risks and the fact that you had something awful enough to warrant needing some treatment in the first place. I think you have to let go of this idea of not wanting to take drugs. We are lucky to live in a part of the world where we have access to medicines to make our lives better yes of course no one wants to take things unnecessarily but it’s worth remembering that many of these things will give you a better quality of life. (I take 22 different medications a day…!- if I didn’t I simply wouldn’t function).

I agree with @JinglingSpringbells . You need a new specialist. The specialists over cautious- and quite frankly wrong in many ways - advice coupled with your own worries is making things worse for you. Ovestin is such a low dose I don’t really understand the hesitancy about using it more.

I haven’t actually noticed any side effects from the solifenacin- but then the issues I was having were pretty awful - horrendous pain like a constant uti, weeing myself when coughing to the point I’d suddenly flood (and it’s nothing to do with my pelvic floor, the urologist checked that and it’s very good), etc etc. I don’t know why there might be inflammation, if there is in your case, sometimes there are no causes for these things. Bodies can just be crap! 😔 Mine is! 😆

Be wary of the D Mannose because although lots and lots of people really think it’s a wonder stuff equally a lot of people with chronic bladder issues find it not so great - I can’t remember quite what I read about it online but it can cause issues re kidneys etc. I tried it for a while in desperation but it made me feel sick and unwell. Likewise I couldn’t get on with the antibiotic you’ve mentioned (N one) either but we’re all different and that’s why we just have to give things a go.

One thing to consider also @mutterphore is your diet and what you drink.

When the bladder is atrophied, and the walls are thin, which is what happens when there is loss of estrogen, it can react to acidic foods and drink, especially caffeine, fruit juices, alcohol and carbonated drinks.

The same for foods- anything acidic. Evidently tomatoes are one of the worst foods for this, as well as the obvious ones like citrus fruits. You could try drinking only very bland things like weak decaff tea, or just water, for a while and a very simple bland diet, with nothing too hot or spicy.

There are some lists of foods that can irritate inflamed bladders, online. Maybe worth a look? It just might be a reason you are having a set back if something has triggered the pain again. If you have no infection and just irritation, ABs won't help.

Once again many thanks for your collective wisdom. This is very helpful.

@JinglingSpringbells just first to address the diet and drink issue: I almost only drink water, no alcohol, fizzy drinks, fruit juice - except occasionally- and up until all this started, drank two cups of coffee a day - my daily treat. I stopped the coffee, which was really sad as it was one of my only treats but reintroduced one to two very weak coffees with no problem.....until I reduced the Ovestin.

In the last couple of weeks, since I've had a nasty cold virus, I did slightly increase the amount of caffeine in my coffees to pep me up and keep me going through the working day and I also drank some diluted fresh orange juice for my cold symptoms. It's very possible therefore that this has exacerbated things.

Since having some major stomach issues about 8 years ago, I only eat very bland foods - no tomatoes, no citrus fruits and I've never likes anything remotely spicy. Not drank alcohol for at least 25 years as I've never liked it and the only other thing I drink - to help with stomach issues is peppermint tea, which I hate but was told it was good for me.

I miss coffee the most as it was my main treat in life but if not having any or reducing it to something weak and watery helps, then I'll have to keep off it.

@JinglingSpringbells now to the issue of the consultant. Her next free appointment booked for me is in May. That's why I'm emailing her via her PA for now. I agree a face to face appointment would have been better. The only one I've had so far was at break neck speed over 30 minutes covering everything and not examining me at all. Anything could be going on 'down there' and I'd not know!

I think she's doing the 'try this for 3 months and then we'll see' thing and so doesn't want to change anything. I'm already using Ovestin more frequently than she's told me to - ie about 4 times a week seems a good compromise for now between the twice a week only she's said and the option of every day.

I'd really like to know her thinking around not using more Ovestin and will try to discuss this with the GP I see on Wednesday about a possible re-infection, if we get time.

Before the consultant prescribed prophylactic antibiotics, I'd already heard that this was sometimes prescribed for recurrent UTIs. I didn't like the idea of an untreated infection festering away inside and spreading, so although I've rarely taken antibiotics in my life, have been willing to give it a go. I don't want to be on antibiotics forever but if they really are helping then I'll continue.

I was told a few years ago (when having lots of post viral digestive issues) by a gastro consultant that probiotics were a complete load of rubbish and that there's no evidence they work at all. So I've not tried these along with the antibiotics.

It'd be awkward to change consultants as the GP recommended her and she's supposed to be the top local one for uro/gynae stuff but I won't rule it out.

Yes, I'm using the applicator to insert the Ovestin and using a bit smeared on to help it go in. However, for the first week, for at least 4 days, I couldn't get it in at all, so suspect that first week 'loading dose' just went into the entrance of my vagina.

@TheYearOfSmallThings I agree that my top priority is just to return to something like normal and @JinglingSpringbells too, I realise that it'll take time for Ovestin to work. It feels such a long and despairing process at present as all I want to do is get back cycling again, not to mention drink coffee and go wild swimming - all things that exacerbate my VA and UTIs. I've put on half a stone in weight and feel unfit and very old suddenly!