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Cystitis in agony hand hold ** interstitial??**

(252 Posts)
Widget123 Fri 21-Dec-18 05:30:40

Hi, I’m just in here for a vent, hand hold and reassurance that I’m not the only one whose going or gone through this.

2 months ago I was walking my dd to school when I felt a cold feeling in my bladder, by the time I got to the school I had to ask to use their loo. That was the beginning and it’s just got worse since... it started becoming more pain and tender ‘down fhere’, I started needed the loo more and more and it burnt when I went to the loo. I went to the docs and my wee tested normal but they put me on a week of trimethoprim, it did nothing, then they tried amoxicillin, this did nothing, cultures still clear. 2 days ago suddenly the pain went from becoming bearable to totally flooring me, I went to docs today and she’s found blood in my urine. She’s now put me on the antibiotic nitrofurontoin, booked me in for and ultrasound and sent off another culture. I’ve tried everything imaginable... I’ve drunk cystitis sachets and water like it’s goinf out of fashion, I’ve elimnated things from diet, totally cut out any drink other than water, I’ve even cut out tomatoes as I’ve her they are bad. Yesterday I had nothing but water some chicken and pasta and tonight I’m still doubled over in pain. It feels like a full blown infection but nothing’s coming up, the doctor thinks it may have become badly inflamed and has also given me Naproxen to ease the pain and inflammation. It’s christmas in 4 days and I’m so tearful, I’m supposed to be hosting for 10 people but right now I just want to curl up in a ball and cry I’m so sick of this it just won’t end... does anyone else have this? Please let me know I’m not alone. The pain is just unbearable

OP’s posts: |
rabbitfoodadvocate Fri 21-Dec-18 05:41:00

Hey Hun.

I've just come out of the other side of interstitial hell. Tried everything I could, but being pregnant and on blood thinner complicated stuff.

I went to see a homeopath and I got some Optibac Vaginal Flora tablets. No joke, in one day I went from crying in agony on the toilet to feeling normal. Started with two a day for a couple of weeks, now I take one with breakfast and have had no flare ups at all.

Don't know if you drink fizzy drinks but cutting everything sparkling has helped me a ton too!

Hope this could help you as I was feeling unable to go on!

Grannyannex Fri 21-Dec-18 05:49:08


itsagranddayfordrying Fri 21-Dec-18 06:16:02

I had this for years , dr couldn't understand how I was in such pain as the culture often cane back clear or with a v mild infection . I went to a reflexologist who told me my bladder was slightly tilted so not emptying properly so I drink one spoon of Apple Cider vinegar in water every day and I'm totally better . It's worth a try , you must buy Braggs brand Apple Cider Vinegar because it has the mother in it , it's available in all health shops. Good luck. I also found ibuprofen best for pain relief when I had a flare up .

AlecOrAlonzo Fri 21-Dec-18 06:29:29

Have you tried Waterfall from Sweet Cures? It comes as either a powder or capsules. Order some today and they will post it straight away usually. I suffered for years with recurring infections. Awful, awful pain and just felt utterly miserable but this stuff is good. The other thing that helped years ago was a stretch. My bladder is tilted and the urethral stretch really helped.

Good luck, Op.

UptownFlunk Fri 21-Dec-18 06:48:33

I had something like this a few years ago, it was agony and it went on for MONTHS. There was no trace of infection but doctor could see the inflammation. She put me on a low dose of Amitriptyline to help with the pain and it did ease it a lot.

Amimissingsomethinghere Fri 21-Dec-18 06:58:32

I’ve posted about this too recently. I have been having problems like this for nearly two years but it started during pregnancy so there wasn’t much I could do treatment wise. I’m seeing a very good professor now who is super helpful. Where are you based?
Do the cultures ever come back with ‘mixed growth?’

Amimissingsomethinghere Fri 21-Dec-18 06:59:02

And don’t panic it will be okay. I’ve been/going through this and it will get better and you will sort yourself out xx

Amimissingsomethinghere Fri 21-Dec-18 06:59:53

Also don’t google IC, you’ll just stress yourself out. I’ve discovered people only ever post the really bad scary stuff

NicoAndTheNiners Fri 21-Dec-18 07:00:51

Ask to be referred to the LUTS clinic in Hornsey. You don't need to be in the area, people travel from all over the country for it. It's the national specialist in this area.

MigGril Fri 21-Dec-18 07:10:20

I've been having similar problems but turns out it a cyst on my ovary causing the problem. So I'm glad they have sent you for a scan as that is how they found out with me. Only difference is when I went to the doctors 2 day's ago with worse pain they sent me straight to the hospital. But I'd already had one scan result back. They have given me strong painkillers and said it should heal on it's own.

Widget123 Fri 21-Dec-18 07:56:07

Thank you all so much for your replies. I’m so sorry you’ve all been there too it’s just horrible. I’ve just ordered the d-mannose waterfall and optibac flora for women on amazon so thank you both. I’ll see how the scan goes... I am worried about it being a cyst as my mum actually had the same thing when she was in her 40s, did you have any other symptoms? I am strangely constipated with all this and I’m normally like clockwork which is confusing me, I’m on movicol for that but it’s not making a crazy difference I don’t know if it’s pressing on my bladder?
Thank you for your replies and I’ll keep popping the pills cutting out the gluten and necking the water until something gives x

OP’s posts: |
HamiltonCork Fri 21-Dec-18 07:59:29
Interesting article about how the urine test isn’t fit for purpose.

I stopped drinking tea, eating chocolate and tomatoes after suffering for years.

HamiltonCork Fri 21-Dec-18 08:00:14

Oh, constipation can absolutely irritate the bladder.

AnnaMariaDreams Fri 21-Dec-18 08:10:32

Lots of info here:
I see a consultant for this, I have had antibiotics for a few months and now take a drug called Hiprex to keep things at bay. In May I was suffering as you describe, I am now symptom free but have to be careful- never hold it when I need a wee and drink plenty of water.

Widget123 Fri 21-Dec-18 08:13:47

Anna how were your cultures coming back? Other than yesterday blood trace both of mine have come back totally clear. I just don’t understand how I can be in this much pain when nothings showing up. I need a wee before I’ve even got off the loo from the last one so definately not holding them in. I’m so tender down there I’m terrified of having to fill my bladder for the scan

OP’s posts: |
JustLetMeStapleTheVicar Fri 21-Dec-18 08:21:01

@HamiltonCork, that IS an interesting article. Thank you for sharing it - I suffer horribly with cystitis, have done for nearly 20 years, and the current urine test rarely picks anything up. During my last bout of cystitis, that test came back clear, but because my attacks are recurrent, the surgery sent the sample off to the lab and - lo and behold - I had quite a nasty infection.

It's so disheartening to be doubled over in agony, only to be told that there's nothing there. I was prescribed antibiotics for one bout which magically cleared up on its own, so I've kept the tablets just in case I have another really bad attack. My surgery are quite good, in that you can drop off a urine sample first thing in the morning, and you get a call back at lunchtime with a prescription.

AnnaMariaDreams Fri 21-Dec-18 08:34:01

NHS cultures showed “mixed growth” which they say is a contaminated sample, meaning all is ok. This is rubbish- mixed growth means just that!
I had a broth culture which grew out E. coli and E faecalis.
I took co Amoxiclav for 3 months, low dose nitrofuratonin for 3 months and as I say, am now on Hiprex alone (not an antibiotic).

WhoKnewBeefStew Fri 21-Dec-18 08:36:18

I used to have this and you have my sympathies. I started taking cranberry tablets daily (the Uber strong ones).

Widget123 Fri 21-Dec-18 08:38:05

Hamilton that article is devastating, I said to the doctor yesterday is there a chance these cultures are missing my infection? She said no they are very accurate. I don’t understand how they aren’t acknowledging this with evidence which is that clear.

I started nitrofurontoin last night, I’m freaking out slightly as I have pins and needles in my arms and legs and bright yellow wee but have just seen they are side effect. I’m just hoping that these perhaps will shift this, I haven’t slept again and am in agony this morning, I’ve just drunk two pints of water back to back, I have a 3 hour car drive to the in laws tonight for Xmas and I’m absolutely dreading it.

I keep reading about women who take antibiotics when nothings been picked up in the culture yet they’ve still got rid of the symptoms, this really needs to change.

Thank you all so much evrything has been so helpful and taken on board x

OP’s posts: |
WobblyLondoner Fri 21-Dec-18 08:39:00

Another here who has suffered with this for decades, and routinely feels I have an infection but the test comes back negative. The game changer for me has been d-mannose, the sweet cures product mentioned earlier. My doctor is very supportive too and I always have some spare antibiotics just in case.

If anyone with medical knowledge is reading this - in the article linked to earlier, the test that performed better was based on DNA testing. I don't understand how that helps - how does my DNA identify that I have a UTI? hmm

Best of luck with your treatment OP. I really agreed with the comment in the article about this issue not being taken seriously enough given the numbers of people (mainly women, hmmm) affected.

Miffymeow Fri 21-Dec-18 08:42:21

I get extremely bad urinary pain when my bowels are irritated, so spicy food, constipation etc. Chilli, prunes etc make it worse. I had pain for about 2 years and of all the crazy drugs they put me on and horrible side effects, the one thing that actually helped was buscopan!! and making sure I don't get constipated. Might be worth a go.

Turns out I have pelvic floor dysfunction due to muscle cramps.
I doubt yours will be that as it is much faster onset, but it might help someone in here.

Have they checked to make sure it isn't a fungal urine infection I take it? They are rarer than bacterial but they do exist.
Cysts on the ovaries could be another cause.
I think interstitial cystitis is more unlikely with such a fast onset, but it could be that you had a bad infection and its caused a LOT of inflammation of the urinary tract, definitely keep taking anti inflammatories like clockwork and drinking a lot of water to dilute the urine so that it does not cause further irritation to the tissues there. Anti inflammatories like ibuprofen or naproxen will need to be taken regularly as they act to block the signals to cause inflammation, rather than reducing current inflammation, so they need to be kept up in your system constantly, taking them randomly won't do anything.

I wish there was more to do, noone seems to understand how debilitating urinary pain can be, I felt like I was in hell.

Just remember, this isn't permanent, it will get better. Keep the pressure on the doctors and don't give in to social pressure at christmas, nothing is as important as your health, both physical and mental too. Christmas is just another day of the year in reality.

MigGril Fri 21-Dec-18 08:43:37

I had no idea a cyst could present as cystitis, I initially had a bad bout with the runs as well As the normal urgency and pain on urinating (I assumed a bad UTI as I've had them before). They gave me antibiotics and it seemed to get better ish, But when I went back my urine sample came back negative from the lab. Oddly enough drinking crabby juice still helps so it's defiantly irritating my bladder and my bowls have been fluctuating between sluggish and normal. But the pain has been constant until it suddenly got worse.

How have your periods been? Have they run any blood samples yet? I didn't intialy link it but realized after one doctor mentioned checking my hormone levels. That my period pain had change as well recently.

TeamEponine Fri 21-Dec-18 08:49:41

I have IC, so if it is that then I totally understand the agony it can be.

My main hints for dealing with a flare up...
- Avoid anything acidic. So no citrus, tomato, spicy, chocolate, coffee or wine (sorry!). No cystitis products. For future, look up prelief, which helps to reduce the acid in food you eat.
- Buy those heat pads for back pain and put one over your bladder. It will help to relax your tension.
- Don't wear jeans or anything else that puts lots of pressure around the groin area. Leggings or tights are your friend at this time!
- No sex (again, sorry!). This can be a major trigger for many people with IC, flaring about 24 hours after DTD. There are ways to DTD without triggering a flare, but during a flare it is best to avoid it.
- Drink lots of water.

Hope you feel much better soon! flowers

Amimissingsomethinghere Fri 21-Dec-18 12:13:24

Did you ask if they came back as mixed growth? She’s talking absolute bollocks about them being very accurate. I get my urine sent off monthly to the Doctors Laboratory in London where they grow the cultures for at least a week and do very specific testing. The professor I am seeing said that even they struggle to detect an infection always. Could always send your urine of to the Doctors Lab if you live in London, they run a courier service too. I’m sorry you’re going through this. XxX

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