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...

It could be worth just doing a course of BV balance Activ gel in case your pH has gone skewy which could cause leaking and the smell.

I think the stuff is harmless so there’s no reason not to give it a go.

When I used it I had improvement within 48 hours.

There are physios who specialise in this, and I'm sure there are apps for pelvic floor extercises. Start with that and insist on a referral. Women's health is often ignored, I bet if your husband smelled of pee the GP wouldn't ignore it.

Haven't read the thread but can you call up a private gynae yourself and just pay for a one off appt to remove the Mirena?

You don't want it in there too long.

Absolutely right to insist on referrals/ investigation. I am a fellow leaker, and despite some half hearted efforts still have dribbly bits.
Would a packet of wet wipes swiftly deployed whilst he feeds the puppy reduce the paranoia?

I hope you get help for this. I really think you should share it with DH. My God, I've shared all sorts of gynaecological issues with my DH. I have 3 types of prolapse since childbirth which cause issues. My DH knows all the details. He's never once taken the piss because he's, you know, an adult. Why would he laugh at something that's causing me distress? Just tell your husband and say "Look don't take the piss. I know what you're like but this is upsetting me and I've kept it to myself for ages because I didn't want you laughing about it."

Try the nhs squeezy app, you can set up a schedule to be reminded several times a day to do exercises. And get some giggle knickers -despite the terrible name they are brilliant. Designed specifically for urine leakage not periods. I have these and modi bodi and the difference is huge. Modi bodi ones reek when you leak, the giggle ones don't.
www.giggleknickers.co.uk/
I've been through the process of surgery (for prolapse) then pelvic floor physio and before lockdown my physio was going to refer me back to the gp for further treatment because my pelvic floor is strong but I still leak (less, but it still happens).
There are loads of things to try. Losing weight is one of the most effective if you are overweight.

OP if you find manual kegel exercises hard (or unpleasant like I do) then I really recommend the kegel8 electric stimulator. It does the exercises for you and is clinically proven to be more effective than manual exercises. It's not cheap but mine's still going strong after over ten years and for me has really been worth the cost. I just pop it in and do something else like surfing Mumsnet

OMG just completed the first full set of kegel exercises. That was deeply unpleasant, I have a low pain now and just feel pressure like I need to pee!

Won't rush out for the Ben Wa balls just yet then...

If the exercises were easy Hilda you wouldn't need to do them...

I have same issue OP. Need to do something about it.

Please do ask your GP to refer you privately to a gynaecologist. I did this about 12 years ago for suspected endometriosis. It was amazing to see a specialist. They can see what's wrong so quickly (because all they look at are those body parts) and are in a position generally to do something about it quickly too. I have had all the surgery covered on my insurance and they just charged me separately for the Mirena (not had the bill for that yet but consultant said it would be under £200).

Google Prof James Malone-Lee. He gave me my life back following 12 years of chronic UTI. Cant recommend highly enough.

Agreed Margaret. Just shows how poor the muscles are I suppose!

Thanks also to Cosmo and Woolly for the recommendations. And everyone else for commenting! I'm rubbish at scrolling back and name checking but I am reading and digesting all your replies, and empathising with those who have a similar issue.

Even if I could resolve some of the bladder weakness issue with the right exercises and shedding a bit of weight (I am quite big, not morbidly so but certainly a size 18), the infection-not-infection needs sorting I think. Past investigations have shown I'm not retaining urine, the bladder lining is normal, no culture's were grown and everything is as it should be except for the colossal white cell count. Scans of kidneys were normal, apart from the one time I went in with a suspected stone and I had one inflamed, enlarged kidney. Happy that there was no stone "to speak of" (bit mysterious?) they gave me trimethoprim and co-codamol and sent me home.

Everything since then has been treated with drinking more, trying to empty my bladder at least every three hours, and the occasional course of trimethoprim. But I mostly just muddle on with leaky smelly wee and an achy bladder.

I've had other US scans since, for gallbladder, pelvis and liver, so if I have an elephantine kidney I'm sure someone would have noticed. Wouldn't they?!

Oops crossed with those last 2 response - thanks Phiney and AHF

GP called today and said they'd do one more check for infection, and write me the referral (once I've confirmed with my insurer where I can go - they get really weird about Spires hospitals for some reason, but that's where the one uro-gynaecologist is)...

That’s great news OP, glad you’ve had a positive response. It will be well worth it!

It's probably just about getting in front of the right specialist and then all will become clear. My endo was eventually diagnosed when the gastro consultant the NHS finally sent me to said 'don't quite know what's going on here but it's gynae'. Good luck!

I thought that if they found an enlarged swollen kidney they investigated it further, rather than just give antibiotics?
www.nhs.uk/conditions/hydronephrosis/diagnosis/

Anyway glad you are getting further investigations done now.

Some types of medication stop incontinence such as Solifenacin. It's worth asking your gp.

Glad to hear you’re making progress with this. GPs seem to be very poor with this type of issue.

Your husband doesn’t sound great. Unfortunately as both of you get older there will probably be more issues like this and it will be very lonely not being able to talk to him.

Your husband sounds very nosey, cross examining you about changing your pants.

Cheek!

Your husband quite frankly sounds like a twat. That’s your real problem. Then go to the GP and have a chat about your issues. I can’t imagine not being able to discuss a health issue with my DH because he might make relentless jokes about it. I wear a pad in bed sometimes because I’ve had 3 kids and my pelvic floor is still recovering. If he made it into a joke I would be furious.

‘Stinky minge’?!
I might need to upgrade from twat to a better insult. Honestly OP, there’s being a ‘hilarious goof’ as you said previously, and using meanness and insults as an idiot’s alternative to humour. He’s damaging your self esteem.

Sorry I haven't read the whole thread so this may have been suggested.

I am a nurse and have done a fair bit of training with a continence specialist nurse in order to support the females in the service I worked in.

One thing she drives home is that bladder weakness is never just one of those things after babies, age etc and nobody should just have to wear a pad as a solution unless all other avenues have been explored as there are usually other options.

In my area you can self refer to nurse led continence clinic. Is that an option for you? - after assessment they make onward referrals if needed, but deal with so many more issues than I ever imagined. It was eye opening to learn how under used the service is and how many women start using pads and never seeking solutions.

Those ridiculous 'ooops moments' adverts are awful for normalising bladder weakness and leading women to think leaking is normal and part of life and just to be managed with a pad (sorry, I'l get off my soap box about that one).

Can I second the reference to Prof Malone - Lee. I don't think he takes referrals anymore but if you can get yourself seen by someone who knows his methods it can be transformative. I had a long course of decent antibiotics to cure a deep seated infection that didn't show up in samples.