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AIBU to just want to give up

(24 Posts)
Nerdygalwithabook Tue 12-Apr-16 22:53:44

Warning - May be TMI

So a bit of background. I got a kidney infection just over a year ago. Since then I kept getting kidney pain and blessed infections etc. I got referred for an ultrasound which had me referred to an Uroligist at the hospital where I found out I have Cysts in my bladder. I cannot drink fizzy drinks and this triggers it. Not drinking Enough triggers it. Stress triggers it. It's like having cystitis and a bladder infection and a temp all in one but multiplied for a few hours and then it fade. I also will suddenly be hit by pain and nearly pee myself at points.
Frikkin peeing doesn't go easy either. Apparently my bladder doesn't empty properly. I try to go and I can't go properly and it hurts so much and it hurts my kidneys and o sit there shaking and tearing the loo roll holder of me of the wall. I find it hard to talk about normally as it's embarrassing not being able to pee properly. I know it doesn't sound much but it affects life a lot! I'm waiting for a call to go to get another ultrasound and then be put under anaesthetic to have a camera look around my bladder to see what these cysts are. I hope they are nothing more than just regular harmless cysts them can easily remove and put me back to normal.
Sorry for long post but sometimes I just don't want to take it any more. It's so uncomfortable and o am scared I will have to wait ages. sad

Room101isWhereIUsedToLive Tue 12-Apr-16 23:06:18

Sounds absolutely dreadful. If the referral doesn't appear very soon, chase it definitely.

Nerdygalwithabook Tue 12-Apr-16 23:14:04

Thanks :/ I think I will. I previously rung 111 for advice and got told to go to a and e but I didn't want to waste their time means I'm waiting for the op. :/
I'm just sitting here ready to cry. It's so hard to explain but I'm so fed up with it sad

Room101isWhereIUsedToLive Tue 12-Apr-16 23:55:17

How long have you been waiting for the next appointment? More than ten working days and in your shoes I would be chasing them.

Bodear Tue 12-Apr-16 23:59:00

Hey OP. I don't have any practical advice but I have previously suffered chronic pain from a condition that is now pretty much fixed. I just wanted to say that I understand what you're going through and how regular pain, in and of itself, can be miserable. It can stop you doing the simplest of things that have a massive effect on life.
Hang on in there. It will get better and this will become a bad memory. I don't know how to get the flowers picture but <flowers>

timemaychangeme Wed 13-Apr-16 00:33:51

Oh i can SO sympathise with your post. I have hydronephrosis which makes urine flow back into the kidney. Also have a narrowed ureter which makes kidney drain slowly. Not enough water = infection. Too much water = pain. Leaning against a hard surface = pain. Periods = flare up. Stress = flare up. At times I felt utterly despairing of it ever being relieved.

My GP referred me back to urologist after a particularly bad run of one infection after another and I was put on 6 months of antibiotics. I had no infections at all the whole time and it was bliss. As soon as I came off them, it started up again so I'm now back on them for a year. Again, no problems since i started them again.

Please chase up your appointment for ultrasound and cystoscopy. When they have a clear picture of what is going on in your bladder and a plan for treating it, you will hopefully feel that you are going forward. It's this limbo period of being in pain/unwell and nothing happening that is so tough. It doesn't sound 'not much' at all. It sounds debilitating and utterly miserable. And if chasing doesn't seem to be getting you anywhere and you have been told to go to A&E if the pain is acute, then you will not be wasting anyone's time. You are having trouble/pain peeing and potentially it could be causing scaring in your kidneys, so I wouldn't feel guilty about going if it's that bad. Keep on chasing and once you are getting the investigations you need, you will hopefully feel more positive.

Fizzielove Wed 13-Apr-16 01:31:05

I had an emergency stent places in urethra and the pain alone from than was AGONY! It was only meant to be in for 6 weeks until they did surgery to remove a huge kidney stone, it was left for almost 4 months. I cannot imagine the pain you must get. If it's bad definitely go to a & e you are not wasting their time!

Redderred Wed 13-Apr-16 05:51:00

I completely understand how you feel sad I had exactly what you described for years and it was awful. I still get cystitis occasionally, but it's not as bad as it was.
I didn't ask my gp about it to have further investigations because I was embarrassed (teenager) i only ever got antibiotics.
Instead I found that avoiding triggers massively helps, all the usual advice given. I cut out all alcohol, caffeine and citrus drinks; basically I don't drink anything other than water nowadays. Also never holding it, that always brings it on, and going before and after sex, and washing myself after using the toilet every time.
You need to get the appropriate medical treatment. Don't be afraid to go A&E, I was treated quickly when I went to an urgent care unit doubled over in pain from it (couldn't wait 2 days to see GP).

VegasIsBest Wed 13-Apr-16 05:54:48

Sounds absolutely misersable. Is it worth going to A&E to see if there is any temporary treatment they can give you? Hope you feel much better soon.

Nerdygalwithabook Wed 13-Apr-16 07:20:07

Thank you all for your kind words flowers
I don't know if there's any temp treatments. I made the mistake of looking it up and apparently I can be controlled with frequent surgery but never cured sad
I'm so aorry you guys have gone through this or similar things as well. I will go to a and e next time the flare is unbearable! Thank you for making me feel I wouldn't be like one of those people who break a false nail and go -_-

timemaychangeme Wed 13-Apr-16 20:00:05

Nerdy on at least 3 occasions I have been told at GP or OOH appointments, to go to A&E if I didn't feel better the next day or if symptoms became worse. In my experience, anything to do with kidney pain is taken seriously, so get yourself down there if you feel as bad again. I hope you soon the tests you need.

Nerdygalwithabook Wed 13-Apr-16 21:29:15

Thanks smile
I went doctors today and got antibiotics and if they don't ease symptoms then i have to go back

timemaychangeme Wed 13-Apr-16 22:06:27

Hope antibiotics do the trick. Keep drinking lots of water. And go straight back if you still have any symptoms when you've finished them. Maybe they could dipstick a urine specimen a few days after you finish to see if it's clear. Sometimes I need a longer course than usual to knock the infection out, especially if it's a bit of a deep-seated one. Which they can be when there are cysts as you can end up with little 'pockets' where infection can be hard for antibiotics to reach.

penguinplease Wed 13-Apr-16 22:10:24

Oh I feel your pain, I had this. I had a stent put in but the pain was worse, I begged them to remove it.
In the end I had a nephrostomy tube inserted into my kidney which solved the pain. It was awful having a tube and bag but so worthwhile and I had an op 4 months after which solved it all. Is there any pain relief option similar that they can offer you??

Nerdygalwithabook Wed 13-Apr-16 22:15:15

I have to wait till after the cystoscopy to find out what can be done :/. They are only giving me anti biotics to see if they clear the symptoms until then sad.
Tbh I don't think the cysts where there from birth so I'm a bit concerned

Nerdygalwithabook Wed 13-Apr-16 22:15:43

Also Penguin I really don't want a tube and bag sad

penguinplease Wed 13-Apr-16 22:35:26

No I didn't either.. But it resolved the pain and no one knew except me and my dp at the time. It made life bearable until the op. It is horrible but for short term it was ok. I promise!

Nerdygalwithabook Wed 13-Apr-16 22:49:57

So you don't have it any more? It was just for a couple of weeks?
I thought you meant permanently sad

RedHead02 Wed 13-Apr-16 22:52:01

No advice but I hope you can get it sorted quickly 🌷

Nerdygalwithabook Wed 13-Apr-16 22:54:38

Thank you redhead flowers

penguinplease Wed 13-Apr-16 23:47:28

No! I had it for 4 months, just to ease my agony until I had an op to sort it. You'd never know I had it and at the time although it was the worst thing in the world it did enable me to get on without pain..

Nerdygalwithabook Thu 14-Apr-16 19:59:26

Oh ok was it a Catheter? (I think thats what its called)
What were your symptoms if you don't mind me asking and how did they ease after?

penguinplease Fri 15-Apr-16 09:58:11

No it was a nephrostomy tube that goes into the kidney through your back. I believe a catheter goes through your urethra?
My symptoms were agonising pain, almost constantly needing a wee but nothing there, when I did wee it was bloody and I felt like it was stinging all the time.
The pain in my kidneys was so bad I was regularly sick and was hospitalised for ages and on morphine and pethidine. The tube solved all the problems.
I had an op to fix it and have never had any further trouble.

Nerdygalwithabook Fri 15-Apr-16 14:10:54

Oh I'm so sorry you went through that !! I'm glad your better now!
I'm starting to doubt myself

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