Incontinence - when you have tried everything, what options are left?

[Jaggypinecone]

This has been bothering me for 15 bloody years now. I am now in my 50s. I am fit and healthy, very slim, never smoked, hardly drink alcohol, caffeine intake down to two cups a day at most.

Been to incontinence clinic, firstly it was urge incontinence where I'd feel the need when I got to front door, stood up to do anything. Drank lots of water to retrain bladder, pelvic floor exercises in abundance. It has never made a difference.

I cannot go out without protection. Now it's stress and urge incontinence. Back to incontinence clinic, been following pelvic floor exercise regime to the letter for last two months. I was also prescribed Contiflow. Again still no fucking difference. Sometimes I can go out and I'm fine. e.g. went on a run on Friday wearing Contiflow and got back dry. Today went on exact same run wearing it and I was soaking by the time I got back.

This is really getting me down. Nothing seems to work. What is wrong with me and what options do I have left?

Just on for another rant - I'm now really constipated. Obviously this doesn't help the pressure on my bladder but I feel yucky and fatigued and nauseous and bloated and burpy. My lower back hurts, sometimes my pelvic area. I'm starting to feel really concerned. I can't help but feel that something isn't right. I always have had this notion and I'm sure everything is linked. I feel like I've been passed around various clinics like an experiment with no solution ever being found. Can I demand a hysterectomy? A full one taking out my ovaries too - I won't ever need any part of them again so logic (and some weird instinct) tells me that removing the lot will improve matters.

Has your physio assessed you for a prolapse?

If that involves a finger up your foof then yes but last time was 2018. That was at the gynaecologist clinic because I was there with horrible menopausal symptoms. She then referred me to the pelvic floor physio but I got lost in the system and it was only when I phoned up over a year later stating, erm I know the waiting lists are long but ..... then they realised that the referral letter had never reached it's destination. More waiting. Pelvic physio finally saw me in December last year but she didn't examine me.

My physio spent the first session going through my history & then second was comprehensive physical exam. I don’t know if it’s an option to pay privately? £75 for initial assessment in London to give you some idea of cost.

You cannot demand a full hysterectomy and this may in fact make incontinence worse.

Have you had an internal scan?
I had grapefruit sized cysts and endo,all of this was causing my bladder to be pushed down.
Might be worth getting this checked, as a pp said fibroids could also cause this.

No I've never had an internal scan. Or any scan actually

I spent about 2 years on the Innovo, first the first generation wraparounds then the shorts when they came out. The shorts are very delicate. I had to have four pairs replaced and in the end they refunded me for the shorts, but not the controller. I wouldn't rule out that it can work, I just think it's a new product that they are still working on. I never got past 4 weeks without the shorts or the controller breaking. I did see an improvement, but then they would break and it would all be lost. Couldn't recommended it. I have bout the Kegel8 now, have the time to do it because of staying at home during Covid 19. Next stop urologist if it doesn't work. Have been to women's health physios also.

I have (had) very stress incontinence - did all the exercises, NHS input. First had a tape which was great until it wasn't (about three years later). More physio and exercises - was referred back to hospital where I was offered the choice of another tape operation or plastic bulking injections (day case about five years ago). I chose the latter and for me it's been brilliant.

Plastic bulking extensions????? Jeez sounds more like a house extension. Could you please explain more @Auntpodder? I've never heard of this [off to google]

I had the emsella chair treatment and it was brilliant! I couldn’t get it through NHS, not sure if that’s the same everywhere but my GP was useless and just kept telling me that there was nothing he could do and to do pelvic floor exercises. I had leaking even after my first but after my second (episiotomy and forceps) it was much worse, I got a bad chest infection over Xmas and coughing daily made it so bad. By January I was really down with it and didn’t want to leave the house, I looked and found the emsella treatment online - I went to the Dr Leah clinic for it in London- she is the doctor that won the apprentice with sir Alan sugar. I sat on the chair for 30 minutes a time and it really tightened everything. Not needing pads at all now, except may be if I was to do star jumps or something like that. It wasn’t cheap (£1600) but it was getting me down so much, for me it was 100% worth it.

Has a Physio actually done an exam while you were doing your pelvic floor exercises? When my (private) physio did this, she helped to show me how to do them properly as I couldn’t feel what I was doing so wasn’t sure what was right and what was wrong

Once lockdown is done and dusted I'll echo some other posters, and ask for some other thoughts.

I have endometriosis and it does present bladder issues, swollen pelvis, makes you feel "off" messes with hormones and lots of things you have mentioned.

Even down to your description of a tap being wrong, and treatments not working and the intermittent spells of one day ok the next day not.

Endometriosis can attach to the bladder, in fact it can go anywhere in your body, HRT can aggregate symptoms, so you could have a small amount that's attached, or even inside your bladder, or as someone mentioned a Fibroid pressing on you.

Scans, MRIs don't show endometriosis so it would be a laparoscopic look? But when you are piecing together symptoms look at the whole pelvic region not just the bladder.

Let us know how you are

Thankyou Whynotchange. It was particularly bad earlier this week. My boobs were also swollen and I was constipated so am thinking hormones have much to do with it. But no I've never been examined to see if I'm doing them correctly. And I will come back and say what happens once I ever get seen again.