Mirena, menopause and uti/urination

[Phase2]

Hi all had a mirena at the start of the year, horrendous insertion, so painful. Since then I seem to be having issues with peeing- currently needing to wee about four times an hour with constant low back ache. Had an awful uti over the summer which took ages to go, and then no antibodies in tests so couldn't have antibiotics any more (had two courses).
I'm so tempted to get it removed, it's for hrt purposes.

Can I urge anyone who has had a bad experience with Mirena to report via the MHRA yellow card scheme. This is really the only way your voice may be heard.

Thanks Bertha. I have to wait now for a month but today honestly has been so awful I don't know I how to face waking up tomorrow. Yesterday was great, almost back to normal and today I'm sore, needing a wee all day, back ache and feel bloated and so depressed. This thread is kind of like a diary and maybe like the other one linked it might help someone else.

I'm so sorry you're feeling like this @Phase2 . I went to a private GP to have mine whipped out (took 2 mins). Expensive but worth it. Xxx

I think I'm going to look into that. I've contacted the sexual health clinic as well. Just worried that ill get told it was done wrong and gaslit that having it removed outside the NHS causing problems

So no change. Still struggling it just came on suddenly and has settled into a permanent full feeling in my bladder, soreness and backache. No infection in a second urine test but I'm beginning to think they maybe aren't testing everything. Second one had a small number of white cells and epithelial cells whereas first had none. GP says not significant, maybe repeat .
I don't know what to do I feel like I'm going mad.
Getting mirena removed privately, blood tests booked but not for another three weeks and a GP appointment for after that.
I have looked at VA but it seems unlikely to just suddenly appear from what was originally a uti.

Oh I'm sorry @Phase2 . I do wonder whether you have the same as what I had (aerobic vaginitis). It's an awful feeling to have the constant discomfort. Virtual hugs Xxxxxx

Well I'm starting to find things to pay to test. What I don't understand is the sudden onset really.

@Phase2 how are you getting on? I’ve just come across your thread and it all sounds very familiar.
I started to have a constant feeling of needing to pee over a year ago. At the time I was waiting for a mirena to solve insane perimenopausal bleeding (heavy, clots, bleeding nearly every day). That caused pelvic pain which has never really settled, but the bladder aching and constant need to pee is just getting worse and worse. No uti was ever found, Gynae thought it hormonal, but I was already on plenty of vaginal estrogen and have since added systemic estrogen but no change. I saw a urologist privately who was very dismissive and sent me away to download the Squeezy app. Having had pelvic floor physio in the past, I know this is not the problem. Wondering about removing mirena, although I cannot go back to the bleeding I had, and the bladder symptoms started before it anyway (though have got worse since). It’s so horrendous and takes such a toll. I have anxiety anyway, and this last year it has been so much worse as a result of the constant pain & discomfort.
What you said about waking up in pain and dreading/worrying about this is exactly the case for me too. And then I start to wonder if I feel the pain when I wake up, or if I am so focussed on it that my first thought is “do I feel pain?” and then “yes, there is it” thereby almost making it inevitable because I am thinking so much about it.
I hope you are on the way to some answers. Please do update if you get some. Best of luck.

Hi - I am so sorry @ScottishMouse feeling normal again is just such a basic wish.
I had it removed privately (painless and quick) and have been prescribed vaginal oestrogen at 10mg to try.
That was yesterday so no change yet.
I'm not sure what to do next. I have identified that thyroid issues and PH balance are potentially (minor references not established) linked to bladder issues, so am having thyroid double checked.
I am having blood tests generally and am going to pay for a private urine screening as I'm just not convinced by the dip stick things at the Gp - this is more my piece of mind.
I will update in a week once I've had a few days of being mirena free.

Glad to hear you managed to get it out @Phase2. Fingers crossed that it eases your problems. I am going to ask to be tested for uti again when I see the gp in a couple of weeks. I’m not convinced by the dipsticks either. But i’m also not convinced this is a uti in my case. I previously had feeling of constantly needing a pee, but no pain, about 5 year ago, and local estrogen completely sorted it. Maybe it will be the magic bullet for you. I have no idea why mine popped up out of nowhere again last year though as I never stopped the estrogen. The urologist I saw was adamant it is overactive bladder, but everything I read about that suggests I would actually be peeing loads (I’m not, it’s just a constant sensation but a normal amount of trips to the loo) and I wouldn’t have any pain. So 🤷‍♀️
Here’s hoping you will update with something positive soon (though heads up…local estrogen took a few months to work for me when I had this previously).

suggests I would actually be peeing loads (I’m not, it’s just a constant sensation but a normal amount of trips to the loo) and I wouldn’t have any pain.

^^same here. It's not frequent trips, it's a constant pressure as if not fully empty plus backache.

Yup. I have a bit of backache too @Phase2, but it’s more pelvic pain for me.

Hi @Phase2 and @ScottishMouse I'd really recommend you get both a vaginal and urine test done by a company called Digital Microbiology. You could have a UTI that has been missed by conventional testing or you may have aerobic vaginitis which is what I had (though it felt like a UTI). You need to get both done to get the full picture.

@BerthaAntoinetteMason I am so glad you posted as I was trying to remember the name of the company

Thanks @BerthaAntoinetteMason Unfortunately, this is not something I could afford at the moment. What was the treatment for aerobic vaginitis and did you get that through your gp?

Hi @ScottishMouse - yes I know it is a huge price. And for your question no, the GP was sod all help. I think your best bet might be to go to a sexual health clinic as they can do microscopy and find out if the type of bug you have vaginally is what it should be (lactobacillus) or another kind that might be causing you problems. If they do find something amiss and it is not thrush or bacterial vaginitis, show them this paper which might help. However, it is a disgrace that this condition is not more widely recognized and you may have a fight on your hands.

https://www.sciencedirect.com/science/article/pii/S0923250817300864?via%3Dihub

Note that in this paper there is a section on treatment and it recommends either dequalinium chloride (fluomizin) or clindamycin. Metronidazole will not help if it is aerobic vaginitis. I used fluomizin I got from an online pharmacy by claiming I had bacterial vaginitis.

Please do bear in mind though that I am not medically qualified so take anything I say with a pinch of salt! I just can't bear to think there are people out there who might have what I have and be suffering in the same way.

XXX

That link is really interesting but I think it rules it out for me. I'm going to save and do the urine test for the other place I think. I'm currently back to sore, feeling like my bladder is full and backache. I'm convinced there is some element of uti, possibly within my bladder lining.

@Phase2 I think getting tested is a good idea but I'd urge you to do the vaginal swab as well as the urine test. I genuinely thought I had a UTI as well and went down a embedded infection rabbit hole.

Yes that's a point. I guess it's cheaper to do the uti and it's one thing at a time. I'm so stressed by it. Sitting on a long car journey I can't avoid right now and so sore and as if my bladder is full.

@Phase2 so sorry you're feeling like that - it's so miserable.

On the subject of testing, the thing is it is just not possible to get a clean urine sample as it will inevitably pick up vaginal fluid on the way past. This is why I thought I had a UTI for so long as the tests and dipsticks were picking up bugs and white blood cells actually coming from my vagina. This led me to take ineffective antibiotics for far too long.

Xxxx

So a tentatively positive update today!

Day three of vaginal oestrogen and the pressure to pee has lessened enough for me to be able to go out (eg supermarket) and not panic - not for hours but enough to do a shop. It's still there but not as painful.

Next steps - keep on with thyroid meds and oestrogen, blood tests booked in, and going to do private urine etc tests. I've found a website for women's bladder issues which lists providers including the one linked above.

So I am very grateful to all posters including the early one who mentioned VA as that prompted me to mention it when they took the mirena out.

Great news @Phase2 . I hope the improvement continues.

Ok that was short lived. Am going to order the private tests this week now it's payday. Back to being sore, need to wee, backache.

@Phase2 that's a shame. Hang in there though! Xxxx

Hi OP, try homeopathy, Cantharis might really help you