Hello, first post so be gentle :)
I'm actually not a mum - I'm a student/young carer - but have had this forum recommended to me many times as a place to get advice. I'm currently very much struggling and thought it's worth a try just asking for some advice.
Long back story - I have dyspraxia, have been diagnosed with chronic vulval exczema, vulval cysts, labia hypertrophy, vaginisums, vulval pain, urine retention (acute and chronic), as well as IBS and anxiety/depression. Am taking 5mg escitalopram currently..
Since I was a baby I've had health problems and have spent countless nights in hospital. Have had reccurent urinary tract problems since I was a toddler. This has gotten steadily worse, going from being unable to use strange toilets to being unable to use ANY toilet at all. I no longer feel the need to pee and have to literally force myself to go every two hours otherwise I go into retention.
Had a normal cystoscopy w/urethral dilitation in October, as well as labiaplasty, forty plus normal urine tests etc, normal bloods for kidneys, normal abdominal ultrasounds, examination of back end of vaginal walls incase of a prolapse with a SIMS speculum. All normal.
Was rushed to A&E on Tuesday with acute retention - hadn't peed in 22 hours. Catheterised, passed 1ltr within about 5 minutes, and kept in until 4pm on Thursday - catheter taken out on Wednesday evening after which I managed to pee sort of normally but not totally - I can go, I go enough to colour the loo water in the morning, but during the day I am only going tiny bits (about 40ml) every two/three hours.
Going for a number 2 every hour or so, but again only small amounts - had to use a glycerin suppository yesterday to get things going.
Have now seen two consultant urologists, plus up to eight different doctors in hospital in the last week, about twelve GPs in the last four years plus two gynaecologists. They are thinking it is a side effect of IBS or some kind of muscular problem, maybe to do with dyspraxia. I have been told as well it could be my medication so have been advised to start withdrawing from it (escitalopram) so am now taking 5mg as opposed to 10mg.
I'm no longer sure what to do, I am drinking about 2 litres a day and it's just making no difference. I am only peeing about 500ml a day if that.
Have bought some cystitis relief but I don't have any burning pain or abnormal frequency, just a bit of a sore tummy. If I am quite honest I no longer feel the need to pee - I have to force myself to go every 2/3 hours and have to push down to go.
Nurses told me to take a book/magazine into the loo with me but that makes no difference - at the worst I have sat for forty minutes with nothing happening..
What do I do next? GP surgery can't see me for weeks and don't know what to do, hospital are dithering over doing another dilitation under anaesthetic. Noone has ever diagnosed me with anything - I have basically had to do it myself through google, have come up with underactive bladder and found a drug that apparently will help - is it worth phoning my doctor and asking if I can at least try the drug? I don't want another anaesthetic if I can help it!
Anybody else had the same, anyone got any advice on what to do? Am sick of living my life worrying about peeing!
A good example is you know after you've orgasmed, it's nigh on impossible to pee? I have that ALL the time..
I just don't know what to do. I'm not living a normal life anymore and barely leave the house or do anything.. I'm a student as well and am nearly failing uni thanks to missing so much classes, what should I do next? Any advice at all would be very much appreciated xxx