Embarrassing female health problem

[HildaWasALondoner]

I have name changed for this, as there is one aspect that I can't even tell my DH! Before I start and to give you a clue, I am not a piss troll.

I am pre-menopausal, and on some very light HRT to manage symptoms such as hot flushes, brain fog, irritability etc.

My Mirena coil is overdue for replacement, by about 4 months. I'm having some additional symptoms now like breast tenderness, mild pelvic pain, and pain during/after intercourse.

I have some bladder weakness which the GP felt was probably menopause related (softening of the pelvic floor muscles) - I wear a pad during the day to catch leaks, but I don't use one at night. The old fanj has to breathe once in a while, but I'm mainly self conscious and I don't really want my DH to wonder why I'd be wearing a pad at night. He's a massive pisstaker, pardon the pun, and I'd never hear the end of it. Plus, you know, sexy-time spontaneity. The embarrassing bit is that I must be leaking tiny amounts overnight, so in the morning...well, I'm damp and smell like a camel barn. And even if I DO wear a pad, the morning problem is the same.

DH is baffled as to why I avoid any closeness etc first thing in the morning or keep the covers clamped over me as he's getting up - I told him that I prefer to stay covered as I'm self conscious about my body, but really it's because I'm panicking that he'll get a waft of ammonia and fall unconscious before I can dash to the shower and remove the offending underpantage. If I wake in the night for the loo I sometimes change, but he has been known to wake up and say, "Why are you taking your pants off??"

To add to it I have an long term waterworks problem - for some 20 years I've been getting repeated "infections" (painful bladder and cloudy offensive wee), but 90% of the time there is no infection, just a high white cell count, and routine investigations many years ago yielded nothing. I had a few years respite, but recently this issue has returned - I am soldiering on with bladder pain and leaking foul pee. Gosh I'm so attractive right now.

If you've got this far, I have approached the GP again, however;

1. They cannot remove and refit my mirena because they are not doing such appts at the moment, plus one of the few GPs trained to do so has retired. When they start scheduling appts there is a long backlog.
2. I cannot have antibiotics for my malodorous bladder as there is no infection, and they are not moved to investigate further.
3. The bladder weakness is perceived as "just one of those things", even though I have never given birth so technically my pelvic floor should be pretty good.

I have private insurance so I could get all of this looked at privately - but I'd need a referral. What type of referral do I ask for though? Can a gynaecologist deal with all of it, including the bladder thing? Lord knows a private doctor might get to the bottom of it if an insurance company was paying.

Opinions and advice welcome, if you're not all asleep...sorry for TMI. It's the first thing I've ever felt too mortified to reveal to my DH, and he's seen and heard far worse from me...

Had a look at Professor Malone-Lee and read the Guardian article - sounds great but his website is very brief. Presumably you pay for the consultations, tests and urinalysis and then the treatment?

Roll on deodorant Sadie, that's an interesting idea...never thought to put anything like that anywhere near that area, my urethra is quaking at the very thought! You can get stuff designed for it though can't you...

Hi OP, peri-menopause brought me a v sweaty and therefore smelly hearthrug, particularly first thing after a couple of night sweats. I found washing with soap not showergel helped, also Salt of The Earth deodorant from Holland and Barratt for daytime, slightly more minge friendly than others.
Also BV became more of a problem, again that makes things ferret hutchy, if the ferret's favourite food was smoked haddock.
Just a thought.

The tests and urine analysis are included in the consultation fee. You then pay for any private prescriptions (unless you can persuade your GP to prescribe them for you- some will). He's also on Twitter- he often answers specific questions re chronic UTI and I've found some of that info to be v helpful

I think Prof Malone Lee is semi retired now but he has a team working to his protocols including his son.
There’s a helpful FB group called Chronic UTI support that you could join.

Yes, Prof M-L is semi-retired but doing some Zoom consults (due to covid) and has a team of at least three working to his protocols. He also oversees any appts with the others where they feel his opinion is required

DameCelia haaaahaha, love your post - thanks! Minge-friendly deodorant, fancy. Yes, I have wondered if night sweats plays a part.

Thanks AHF and Anna Maria - v helpful. Maybe I will drop the clinic a line and see what comes of it. In other news, I had a text this morning from the surgery confirming that I HAVE got an infection! Gah. Trimethoprim for me then, ugh.

They've also written me a referral to the uro-gynaecologist covered by my insurer (but not the consultation, I'd have to pay for that - only the testing and treatment is covered). As AHF said, I might be better off going to the Harley Street clinic and paying the same amount for a consultation and urinalysis there, at least they know what they're about and have some empathy for chronic UTIs.

Just for a laugh, check out the name of my Dr in the text. How apt.

Congratulations on the diagnosis! Hope the antibiotics help. Love the Drs name

Proper good shout on the soap tip DameCelia - I decided years ago never to allow soap near my minge parts again, after an alarming experience with a perfumed soap in a hotel left me with immediate pain in the pee pipe and itchy nethers. But I had forgotten that I happened upon a mild unperfumed soap in a different hotel (I work away a lot, when there is not a pandemic), which left me feeling so squeaky clean that I brought one home with me. I dug it out earlier, it leaves ones fanj most refreshed.

Have ordered other items appropriate for a fresh smelling garden, along with unfragranced Dove, and have started the antibiotics. Will drop an email to the Harley Street clinic tomorrow and see what's what.

Thank you all for the sage advice and the laughs. Will keep matters updated, in the interests of anyone else suffering the same problem.

Glad things are looking better downstairs @HildaWasALondoner, just a reminder though that Dove is not soap, it leaves the same film behind that shower gel does, it's that film that stops deodorant and antiperspirant working and also can leave skin smelling a bit 'lived in' shortly after washing.

Oh balls

What sort of soap should I look for that won't leave that film @DameCelia? Just having look at some pure unscented soaps but suddenly I'm not sure! I got the sensitive micellar version of Dove but to be fair it does say "beauty bar" so I guess it's still part moisturiser.

I wouldn't put any kind of soap round my vulva and bum. I only use special ph balanced mild washes for the area, like Vagisan.

I mean Vagisil!

I think any soap that isn't a 'Cleansing bar' tbh @HildaWasALondoner

@HildaWasALondoner
If you don't feel it's clearing up, ask for nitrofuranroin and for 7 days.
I was always given trimethoprim and like you nothing much showed in dip tests but when cultured at the lab it was ecoli and so less effective using trimethoprim.
I also was the same as you. Drank tonnes of water but it made things worse and more sensitive.
I still joke with people these days that I know I'm dehydrated if my bladder starts to niggle and that can be before I feel thirsty!
I do have urethral stenosis and had to self catheterise for a year (age 25 😭) but this has been enough to maintain the opening and touch wood I've gone from almost constant infections to one every 12-18 months. Good luck.
Also if it's any consolation I still get random days of the smell too. I've never figured out if it's wee, discharge or BV. I wash with a flannel and gentle soap and use BV natural gels and that helps. There's no rhyme or reason to when it happens but if I wear tights or tight trousers it's always worse x

Cheers Dame.

And thanks Jack - glad to hear you've had some success in getting it under control!

Sadly I am allergic to nitrafurantoin. I took it for three months, and a couple of weeks into the prophylactic course I had an inexplicable episode of what felt like a chest infection - I felt very unwell, was short of breath and was coughing up white froth. Went to GP who sent me to hospital with suspected PE - there was an awful lot of concern, blood tests and blood thinners and frightening my DH to death, until a CT scan found there were no clots, and they sent me home saying it must be a lung infection. I finished the course of nitrafurantoin, with terrible pain in my upper back and shortness of breath the whole time, which the GP said was the aftermath of pleurisy.

A few months later, I was given nitrafurantoin again for another infection, felt unwell and short of breath and coughed up white froth - went in to see GP who was checking back over my notes and stared at me in horror as realisation dawned that it tied in perfectly with the antibiotics. Why three hospital consultants didn't put 2 and 2 together we'll never know.

So unfortunately I can't touch nitrafurantoin OR any variety of penicillin. It doesn't leave them much, I know.

The offensive odour has now cleared, after 24 hrs of trimethoprim, but I still have pain around my bladder at the moment. I gave the kegels a break yesterday, in case they are aggravating things.

Have you thought about topical oestrogen cream to keep tissue in the vagina/urethra plumped up and fully functioning. Im perimenopausal and was getting increasing problems with bouts of cystitis and irritation until i used estriol cream regularly.

Dont put up with this OP.
Personally after years of random health issues and getting nowhere and pinged around to different depts, I'd go private on this.
Would your DH really make fun of this? That's shit if so.
I dont leak but I do need to wee nearly all the time, it's awful.
You have my sympathy. Hope you get sorted soon.

Well Wbeezer, the GP did prescribe some oestrogen and progesterone for the menopause symptoms, and I assumed that she was talking about the kind of oestrogen which was a pessary - I mentioned it and there was a silence on the phone before she said, no Mrs Londoner, you rub it into your skin. Oh. Thank goodness I asked, I might have tried to push alcohol gel up me chuff.

Perhaps with this issue they might suggest the cream as well.

IdblowJonSnow (great name, so would I), yes I do now have a private referral. Unfortunately I'm going to have to pay for the consultation though, I've used up my quota this year on my stupid foot.

Didnt realise you were on HRT, was v tired when reading the thread.

I am vaguely alarmed today at the level of pelvic pain I have, considering the antibiotics seem to be doing their job.

It's not too bad, I'm not talking sweating in agony, but I've been aware of a constant, low grade ache since I woke up. It's not cramping like period pain, it's constant with occasional increases in intensity for a few seconds, and a bit lower than uterus pain. It's not wind because it isn't moving, and it doesn't feel any worse if I poke it, although about 30 secs after a good press on it worsens it for a few minutes. It's worse when laying down.

Oh bloody hell. I don't have a temperature, I did feel very unwell yesterday but that was a migraine which went away with the right drugs. I'm just going about my day really, but if it doesn't go off I suppose I'll have to call the doctor again on Monday.

Wonder why it's hurting even with antibiotics?

@HildaWasALondoner you might still have pain for a few days even if the acute infection clears because it takes the inflammation a little while to improve

Is your GP a male, op? This feels like a classic case of a women's health issue being brushed 'just put up with it' by a man.

I used to have a colleague who has similar issues to you, and constant urinary infections and the smell was very noticeable. It's a very particular smell, not like normal wee and if your GP hasn't experienced it then they probably aren't grasping how much it can affect you. Definitely push for a referral to urologist.

Sorry just read your updates x