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Urge to pee still not resolved

(56 Posts)
royalair Fri 22-May-15 19:29:02

Ladies just posting to see if any other ladies with this (there's been a few lately on here) have made any progress. I feel all the time like I need to pee. Been to gynae & urologist and rules out things like ovary problems, overactive bladder, uti etc. No one seems to have any idea what to do next? I have good and bad days but I think that's mainly down to how well I can try to
Ignore it rather than genuine improvement. I have vulval eczema but both gynae & urologist don't seem to think there's a link. Anyway just wondering if any other recent posters or anyone else could shed some light or am
I destined to feel like this forever sad

Ihatecobwebs Fri 22-May-15 19:43:54

Urethral syndrome? has some details, plus Google gives other links.

I've had it for five years, and control it with amitriptyline hydrochloride, but it can still flair up, and has limited sone activities.

royalair Fri 22-May-15 19:50:46

Is this same as urethritis? Urologist said I didn't have urethritis as urethra would look red/inflamed. How did you get diagnosed if you don't mind me asking. Thank you

Ihatecobwebs Fri 22-May-15 20:03:38

Not the same. It feels a bit like cystitis, but no infection present. Seems to be a catchall when the problem isn't anything else. Doctor said to try the tablets, and see if it helped, which it does. Seems to blunt the nerves, so stops that irritated feeling, the one that makes you feel like you need to "go", but you didn't really.- but I can't go running anymore, as that movement aggravates my system.

Started on 50mg, then went down to 20mg per day. Was advised not to over drink, but to keep hydrated, as "strong" urine can upset the nerves.

royalair Fri 22-May-15 20:10:51

I tried amitriptyline for 5 weeks- got up
To 40mg and it made no difference. I sometimes wonder did I need to be on it longer to work or is 5 weeks long enough? Thanks

trinity0097 Sun 24-May-15 20:20:08

Are you thirsty? Have they ruled out diabetes?

fairbalance Sun 24-May-15 22:28:11

How old are you? I am thinking perimenopause, Vaginal atrophy. Oestrogen cream may help.

royalair Mon 25-May-15 18:24:10

Not thirsty so don't think its diabetes. I am 41 so will mention to gynae next week although she sort of dismissed it when I mentioned it the first time as a possibility

fairbalance Mon 25-May-15 18:40:08

Perimenopause could well be a possibilty. It was a symptoms I use to get oestrogen Gynest cream solved it. I would push to try some. Its very, very low dose.

royalair Mon 25-May-15 19:23:08

Fair balance would you mind expanding more on your synptom? I feel like a tickly sensation almost that's like a nudge to pee but I know I don't really need to, don't know if that makes sense. Did you have any other peri menopausal symptoms. And how did they diagnose it? Thank u

fairbalance Mon 25-May-15 19:27:18

Like an itch constantly wanting to wee (when I did not need too) plus I was getting some vaginal dryness which made me itch too.

fairbalance Mon 25-May-15 19:31:19

Just read your description yes you could describe it that way too. Periods slightly erractic but regular and I felt warm (not a hot flush) but as though my temperature was rising. My Mother had an early menopause so I was given HRT Femston 2m but that was not enough so my new GP gave me bioidentical HRT Oestrogel and Utrogestan plus Gynest Cream and I feel fab. My symptoms started around the same age you.

prominent5 Mon 25-May-15 19:44:33

I had the exact same symptoms and drove me made for 2 years. Finally I saw a urologist who actually listened and after some tests it was found I had a very slight narrowing of the urethra (urethral stricture). I had a procedure called a urethral dilation and after 3 weeks all of my symptoms are gone even after having a baby. It was amazing!

royalair Mon 25-May-15 19:49:03

That sounds very similar. I have vulva eczema or so Dr says but she doesn't think it's linked to the peeing sensation. I'm thinking the eczema which is currently being treated is making them forget to check the obvious like Perimenopause symptoms. I will be questioning gynae with all this as my sanity is suffering with this weird sensation and raising my anxiety so I'm in a bit of a vicious circle now where I'm literally afraid to go to the loo in case it's too often confused. Thanks so much for the info. It's very helpful

royalair Mon 25-May-15 19:50:41

Prominent5 thanks. I saw a urologist but didn't find him any help. He basically said urethra looked fine (from a quick look just by eye) and had no real suggestions.

reup Mon 25-May-15 19:56:34

I had this. Had various tests for infections - nothing came up. Then gp decided it was vaginal dryness. It felt like cystitis to me - constant burning. I was prescribed some sort of hrt pessary. Estradiol/vagifem. Its lots better but I still have the occasional bad day. I was about 46 when this strarted.

royalair Mon 25-May-15 19:58:15

Thank you reup.

reup Mon 25-May-15 20:00:52

I may have had n old thread about it on hers a few years ago.

fairbalance Mon 25-May-15 20:07:18

OP blood test for perimenopause and menopause are notoriously unreliable it is best to diagnosis on symptoms. I agree it does drive you mad this symptom. Vagifem is the the other alternative to Gynest Cream. I prefer the cream.

wishihadawilly Mon 25-May-15 20:14:47

Hi royalair,

I'm sorry that you're suffering like this but I'm the same and have been now for years sad The constant feeling of wanting to pee is horrible and unless you're one of the unlucky few, people just don't seem to understand just how torturous it really is. I too have seen urologists, had urodynamic tests, cystoscope and even had my urethra dilated because I struggle to get pee out as well as feel as if I want to go ALL the time. The thing is I now know what it is and can't believe nobody thought of it before. I have pelvic organ prolapse which means that my bladder,bowel and uterus have all fallen out of place and are pressing against each other, causing these horrid symptoms. Have you ruled that out for you? I feel so silly that I had no clue about this condition and only wish I had known sooner so that I could have done something about it before now. Nobody in urology thought of examining me and it was only during my routine smear last year that I found out!
I will be having surgery later on this year and hope and pray that this horrid sensation will finally be put to rest.

royalair Mon 25-May-15 20:44:39

Thank u ladies
wishihadawilly (very appropriate !), so sorry to hear you have suffered like that. IS that all related to childbirth? I had sections and no mention of prolapse during any internal exams (had lots for troublesome pregnancies etc). Presume gynae would have picked up if there was any prolapse issue.
Best of luck with your surgery, I really hope it resolves for you smile

royalair Mon 25-May-15 20:46:18

Thanks fairbalance I read that alright about blood tests not being much help & symptoms more important. Hopefully I'll get it sorted soon

hiddenhome Mon 25-May-15 20:50:25

Interstitial cystitis?

I went though about two years of constantly needing to pee with a lot of associated discomfort.

Turns out that I probably have IC. I can't drink most types of liquids and just have to stick to non irritating and non acidic things such as water, milk and herbal teas. I can't eat certain acidic foods either.

fairbalance Mon 25-May-15 22:08:05

@Royalair I am tending to think lack of/declining oestrogen in your age as you are about the same age as when my symptoms started.

MugsLife Wed 27-May-15 21:24:17

Hi again Royalair.

After 2 months of it, mine problem has gone away in the last few days. I'm not sure why - it started getting better during my period and I've felt pretty normal for about three days now.

I had a vaginal swab a week last Monday, which came back negative, so I went to see a doctor who said "I don't really know what to suggest". So I suggested a scan to check for ovarian cysts (I discovered the urge to wee can be a symptom of that). She agreed and requested one, so I will get one, although it could be ages before I get it as it's waiting for a hospital appointment. Not sure if I'll need it know, as hopefully it won't come back!!

Some people in previous threads mentioned about dryness, and the doctor mentioned it too, so I got some vaginal moisturiser (who knew?) from Boots, although I didn't get round to using it as I noticed it getting better anyway.

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