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Looking for women alike. Recurring Cystitus? UTI? But no infection?

(17 Posts)
SunnyShine1234 Tue 25-Mar-14 10:47:40

Hi. I'm hoping to find some women having the same problem. I had a bad case of Cystitus end of Jan, it took two lots of antibiotics to clear it. Although no infection was actually found in my samples. It went for about 2/3 weeks and then started again nearly 3 weeks ago now. Although didn't feel quite like cystitus, as no burning when I wee, and just the actual feeling in my vulva that I needed to wee. I went the docs a few days after it getting no better. She referred me to see a urologist. It got increasingly worse with low pelvic pain and I went back to the docs. The doc gave me the antibiotics that cleared it last time. I felt like they had just began to work as I was taking the last few tablets, but then once finished the symptons got a little worse. I was also on my period and did wee brown, which the doctor said wasn't blood, so he thinks it is a vaginal problem. I am having a Cycstoscopy on Thursday but just looking for women who may have experienced something similar. Please can I stress that I do not want anyone diagnosing me with something awful, I am having therapy to stop me thinking everything I have is cancer. I am just looking for some positive outcomes. Thanks, I really appreciate you reading this.

woodrunner Tue 25-Mar-14 17:31:06

Only thing I can suggest is to ask if you take fish oil supplements. If you do, stop. They can cause excruciating cystitis-like symptoms. But the rest sounds like it might be an infection elsewhere. Hope you get a proper diagnosis soon.

1966gettingold Tue 25-Mar-14 21:05:38

I am having horrid problems in the vagina area in general, I am having a cystovideo???????gram can't remember the full name on Monday. Are you perimeno age group?

SunnyShine1234 Wed 26-Mar-14 11:25:37

Thanks for responding. I'm 40. So maybe a little early for menopause, but I don't know a lot about it. What problems are you having?

1966gettingold Wed 26-Mar-14 16:48:28

Perimenopause starts about forty and can last up to ten years before full blown menopause, go onto the menapause matters forum loads of advice and very knowledgable ladies. The first thing it starts to affect is the bladder.

perfectmummy Wed 26-Mar-14 20:54:04

can't believe I have just read your post! exactly the same story as me but mine started on boxing day! I am also waiting on a cycstoscopy but not able to have one until mid June. My symptoms seem to follow no pattern. I have tried to find triggers from food and drink or hormonal/stress and nothing makes sense. When I have an episode it seems to very strong symptoms for 2-3 days and then about 1 week to get over it completely. My doc thinks it is a pelvic infection as in the beginning I had severe bloating and low pelvic and back pain. Since then the aches and bloating have gone but I have been left with a very strong sense of needing to pee! I don't always have to go and infact going makes no difference to the sensation. I am so used ot feeling like I need to pee that now I have to push on my bladder to actually work out if I really need to go or just think I do!
I hope thongs improve. Do let me know how the cycstoscopy goes. I have a concern that it will irritate my bladder even more but the consultant thinks not!

VivaLeBeaver Wed 26-Mar-14 21:04:26

SunnyShine, I've had this for three years. Exactly as you've described. I've never had an infection according to lab tests. However when I pee on a stick there's leucocytes and antibiotics clear it up.

I've had every test under the sun and the urologists have been crap. I've been on a low dose of antibiotics for three years which keep the symptoms at bay. Currently having a massive flare up as I stopped the meds two weeks ago just to see how it was.

There's a Dr in London who's a specialist in this. He believes that women with these symptoms do have an infection, but one that isn't picked up on a routine culture. He's a proper nhs consultant professor person. I've asked for a referral to him.

Search on Facebook for a group called obbi for loads more info.

AnyaKnowIt Wed 26-Mar-14 21:10:56

I had this, I infection after infection. Had a kidney scan but apart from some mild scaring it was fine.

Strange thing is that since pregnancy I've had no problems, dd is 3 now.

SunnyShine1234 Thu 27-Mar-14 22:08:32

Hi. Thanks for all the replies. Perfectmummy... can I ask, did you have any brown in your wee? My cystoscopy wasn't the outcome I wanted. The bladder was all clear, but there was a very visible lump. He said it was my uterus and it shouldn't look like that, but some women have a bulky uterus. I, however, have diagnosed myself with a tumour and I am in absolute turmoil. It is good to hear of your similar stories.

Jesuisunepapillon Fri 28-Mar-14 12:10:10

Have a google of Interstitial Cystitis

OurMiracle1106 Fri 28-Mar-14 12:21:13

I get repeated feelings of urine infections and sometimes my urine smells very strongly. Most times I have nothing in my urine though occasionally something is found to be there. I've suffered with it since I was 16 and certain things irritate it. I find drinking lots two ibuprofen and a hot water bottle tends to relieve the symptoms or at least makes me more comfortable

Its horrid I kbow (((hugs)))

hiddenhome Fri 28-Mar-14 21:05:03

I used to have this and had several courses of antibiotics and natural remedies before realising that it was what I was drinking that was causing it. I was at my wits end.

Tea (including decaff tea) and filter coffee was my trigger. I also can't drink very acidic drinks like wine and fresh juice.

Try just drinking Evian water or milk for a few days and see if this helps.

perfectmummy Sun 30-Mar-14 17:00:47

hi, sorry taken so long. no my wee is always a normal colour. never any blood or cloudy only once smelt of what I had eaten for dinner (yuk)!
I forgot to say I have been given 3 months anti boitics. On week 3 and haven't noticed any difference. I might start a food/drink diary and see if I can find any triggers.
Hope all goes ok. Try not to worry. I had convinced myself I have a cyst that was going to burst and I would die. I was worried about going on hols. I think I have had it so long now I have managed not to be so anxious about it, although I hate the thought of having to deal with this in the long term if there isn't any true diagnosis.

Lonecatwithkitten Sun 30-Mar-14 17:22:35

I was also going to suggest interstitial cystitis.

SunnyShine1234 Wed 02-Apr-14 21:46:04

Well, I had my scan and all was clear, thank god, that has been the worst 2/3 weeks of my life ever, and I dragged my family down with me. They only said I had some inflammation on my right kidney. This helps explain my symptoms a little I suppose and the brown in my wee. I'm back to the docs in the morning to discuss it further as I still get the feeling of needing to wee and want some answers. What antibiotics are you taking Perfectmummy? How come they prescribed them when no infection and how many do you take?

ihavenonameonhere Thu 03-Apr-14 18:39:54

I would also look up nterstitial cystitis. I have suffered on and off for years as well as other problems down there.

Tea is also a trigger for me although coffee isnt too bad. I find lemon squash helps, dont know why but it does for me!

This is an amazing website https://www.ic-network.com/ - quite American but the videos etc are really helpful and I follow a lot of the advice given.

1966gettingold Sat 05-Apr-14 18:16:26

I am going private at the moment for various down below issues, one being feeling like I have a pee infection but all clear when it comes back from hospital.

The uro/gynae I am seeing has the pee tested in a different way, and I had a letter this am saying the first part of the test is showing various organisms, and she will await the second part later in the week to know how to proceed.

There are apparently deep seated bugs that can be in the bladder for along long time, that do not get picked up by the normal way of testing.

I know of two people that have had this form of test done, and they both had negative local hospital results, but this form of testing has shown up big infections, on a long course of antibs, one of the is peeing pus from the infection. The form of testing is "broth" testing and there are only two places that do this, the best is London.

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