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

[Widget123]

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

My cultures all came back clear too apart from the smallest trace of blood. Numerous tests, antibiotics to see if they cleared it and then the doctor literally just washed her hands of me and said it isn't life threatening so crack on! Bad enough at any time, but having this when pregnant has been unreal.

I started with d mannose but it did nothing for me. Those flora tablets though. I swear they are some kind of miracle. I took the lady in the homeopathic shop a bunch of flowers I was so grateful!

I will say that I risked a glass is sparkling water the other day...instant flare up. So if you can, say goodbye to anything fizzy!

My consultant who's one of the leading experts on UTIs says that routine nhs cultures miss around 80% of infections. There is research to back this up. Mine aren't picked up on culture, though interestingly I normally am positive on dip for leukocytes. However if my urine is checked under a microscope (which nhs doesn't routinely do) the bacteria from the infection are very visible.

Thank you all for this info it’s really interesting. So assuming I have an undetected infection which is what this sounds like it is, where do I go from here? I’m on my third type of antibiotic and I’m terrified this ones not going to work either. Do we just keep working through them until we find one that works?

I’ve got my mannose and flora tabs coming tmro I can’t wait to try them.

I just want to ask one more thing about a symptom which has been worrying me a bit, since having this my urine flow has changed, it’s slower now, even when there’s lots in my bladder I can’t just wiz if out it takes it’s time and sometimes even shoots off in weird directions (sorry tmi). It freaks me out becasue in my head I visualise some kind of blockage stopping a good flow ... has anyone else had this is it normal?

Hesitancy is a symptom I have had, which is what you’re describing. I also had urethral pain as my worst symptom.
It’s really staying on the antibiotics for longer- a week didn’t work for me. It took a good 3 weeks before I was symptom free and once I stopped them it came back. As I say I was on high strength co Amoxiclav for 3 months and low dose nitrofuratonin for 3 months.
Now i’m Just on Hiprex and that’s working to keep things at bay. I have 3 days of antibiotics if we dtd to stop a flare.

Thanks Anna, yours sounds so similar to mine. I’m glad it’s not just me regarding the hesitancy. My urethral pain is horrendous and definately the worst part of this for me, I’ve read there is often a small amount of relief after peeing but with me I dread it because I sting and hurt so much after. If If I hold a piece of tissue on it it’s so sore and tender. I’m half way through a very long drive to the in laws and I’m honestly in agony, I’ve asked my partner to stop 3 times already but I’m holding it now as we will never get there and I just want to cry... there’s not even anything left to come out. If these antibiotics don’t work I’m going to talk to my GP about going down the long term path you are on and the hiprex, I honestly can’t bear this anymore! Thank you so much for all of the reassurance and support. It means a lot.

After reading what a lot of you have said I’ve had a hunt and found this company who would check a sample of my urine under a microscope... what do you think??

www.medichecks.com/tests/urine-microscopy-and-culture-uti

If you can I would be asking for a referral to one of the consultants listed in the Chronic UTI page- eg Prof Malone Lee
The trouble with that medichecks thing is what will you do with the results? Who will prescribe?

Hiprex is available via eBay from Australia if you want to start that.
www.ebay.co.uk/itm/Hiprex-1g-Tablets-100-Hexamine-Hippurate-1g/253005267527?hash=item3ae84a0247:g:c7MAAOSwwzhZS3Ft
Other things that may help- Azo is a lifesaver for short term pain relief - you have to buy from the US.
<a class="break-all" href="https://m.ebay.com/itm/Azo-Standard-Tablet-Max-Strength-12ct/382578267439?ul_ref=rover.ebay.com/rover/1/711-53200-19255-0/1?icep_ff3=2&pub=5575403800&toolid=10001&campid=5338429407&customid=1&icep_item=382578267439&ipn=psmain&icep_vectorid=229466&kwid=902099&mtid=824&kw=lg&srcrot=711-53200-19255-0&rvr_id=1791686257038&rvr_ts=d4a17f021670a16d7a142f07ffd3628a&_mwBanner=1&_rdt=1&ul_noapp=true&pageci=006b8216-1de3-4a13-a25a-6f97d540478b&epid=1622797938" rel="nofollow" target="_blank">m.ebay.com/itm/Azo-Standard-Tablet-Max-Strength-12ct/382578267439?ul_ref=rover.ebay.com/rover/1/711-53200-19255-0/1?icep_ff3=2&pub=5575403800&toolid=10001&campid=5338429407&customid=1&icep_item=382578267439&ipn=psmain&icep_vectorid=229466&kwid=902099&mtid=824&kw=lg&srcrot=711-53200-19255-0&rvr_id=1791686257038&rvr_ts=d4a17f021670a16d7a142f07ffd3628a&_mwBanner=1&_rdt=1&ul_noapp=true&pageci=006b8216-1de3-4a13-a25a-6f97d540478b&epid=1622797938

Hi Widget
So sorry to hear how bad it is.
Regarding what happens to your flow, this happens to me when I have an infection too. I don't know why it does - I've always assumed that it is some form of inflammation and this results in that feeling of restriction? It's a wonderful thing when it stops. Really hope you get some relief soon.

You’re right Anna what would I do with it. I suppose I just want to know it’s an infection. I’ve just woken up with my bladder killing me then rushed to the loo and now my urethra is on fire so I’m hurting like hell on earth down there. Every morning I wake up and hope it’s gone and it’s not. My scans on the 31st I’ve got my GP follow up just after that with results and they’re going to refer me to a specialist then once they know what’s going on. I suppose it could be a long wait before I get to see someone with the waiting lists etc. I read up on Hiprex that it only prevents future infections not current ones? I’m on naproxen and nitrofurontoin now so I’ll finish those along with the flora tabs and d-mannose I’m hoping to start today then order these. I drank 11 pints of water yesterday, it’s not doing a damn thing. This is utterly shit.

Wobbly that makes sense about inflammation causing restriction particularly as my urethra is so sore, if I gently push on it from inside it’s sore all the way up so that would make sense.

I'm so so sorry you're going through this. I know your pain and it is absolutely awful. I'm impressed you drove to the in-laws I hope you can tell Them what is going on? It helped me to be able to tell people how I was and anyway you won't be able to hide things I guess.

This is a point where you need to throw the kitchen sink at it and to hell with "medical evidence".

1. Send DH to Holland and Barrett's for Homeopathic remedy Cantharsis.

1. Wear a skirt (if not already) with granny pants. Wash all clothes henceforth using baby washing powder

1. Wee in a warm not hot bath - no soap product of any kind ever again in the bath and water only on your bits in the shower. You can put salt in a bath and sit with your water to drink and the radio for an hour.

1. NO BOOZE AT ALL until

It's properly gone. And if you do drink again then long liquid drinks like larger or spritzers - never spirits

1. Keep a long of how much water you've had, when you pee, and on scale of 1 to 10 how bad it was. This is psychological to help you feel in control and monitor any improvements - which will come!!

1. With the gentlest touch imaginable bring yourself to orgasm as this can release some of the blood that has built up around your whole vulval region. If you don't come after about 30 seconds stop and try later. I know you won't feel like it but I was amazed once how it helped. Other than that, no sex no sex no sex

1. Drink barley water or water at least 8 pints over 12 hours

1. I ended up trying shiatsu and reflexology I think both helped a little longer term

1. The strongest pain killers you can get your hands on.

10. Relentlessly go back to your GP. This is not 'cystitis' and needs treating and investigating.

I'm so so sorry. It's the most miserable thing I have ever had in my life.

Thank you frolicks. How long did your go on for? I’m feeling so miserable today, I’ve spoken to the mum and she’s been understanding, I had a bit of a cry telling her which I’m embarrassed by as she hasn’t seen me like that before.

I’ve just got it in my head that something more sinister is going on for it to be going on this long and for it to be so relentless and so painful day after day with no let up.

If it’s an untreated infection why’s it not going to my kidneys? It’s been weeks now. ALL I am drinking is pint after pint of water and it’s not making any difference whatsoever, everyone’s celebrating Xmas and drinking champagne and I’ve dragged myself up to bed with my toddler. Is this supposed to to hurt this much!! Feeling flat and so pissed off. I don’t even know when I genuinely need a wee anymore so I just randomly go. It’s day 3 on the nitrofurontoin and no change so I’m guessing these aren’t going to do a damn thing either

There are a couple of FB support groups for this- try searching chronic UTi/ embedded infection.
It is miserable, I agree. Get some Azo ordered ASAP.

Sooo after doing quite a lot of reading I’ve just come across ‘Urethritis’. It’s more in keeping with my symptoms as my pain is very low down more in my urethra, it’s even sore when I press it. Now the antibiotics to clear this are totally different to the ones for a uti. I didn’t even know his existed but my bladder itself isn’t the big problem it’s lower down so I’m going to take a gamble and ask for doxycycline next week and see what happens.

www.healthline.com/health/urethritis

Yes that's what I had. I ended up having dilation of the urethra twice ouch not sure it did much good. Longer term it's just gone away - so really bad in my 20s not so bad in my 30s. Then basically I stopped having much sex and it all went away. Unless I get vv dehydrated:(
I wish I had a magic answer for you. It made me terribly depressed for a long time. But you may be luckier than me plus this was eons ago so medicine will have improved too. It WILL pass. I promise you it will.

I've had IC 27 years-it is hell at times. I feel for you. I've had cystoscopies and bladder infusions and lots of Rx medications but the only thing that consistently helps is amitriptyline at night-controls the urinary frequency and pain. I know certain foods and drinks trigger me. You have to be a detective about it though. My urologist once said my bladder bled so bad with saline dilation that it looked like raw meat. Good luck

Also can I just say, before you start panicking (like I did!) IC is actually extremely rare, according to my urogynae (who sees ALOT of patients with these types of symptoms and is the leader in this field).

As in, I saw him, panicking I had IC (after too much googling) and he was like no, IC looks like X you have more of X. Iyswim. XxX

In desperation I paid to see Professor James Malone-Lee who
Is quoted in the article linked by HamiltonCork. After years of horrendous symptoms but tests coming back clear my life was being wrecked. I had everything the NHS threw at it - prophylactic antibiotics, bladder installations, bladder stretch, cystoscopy (which found loads of cysts on bladder wall). All they could offer we’re instillations which did nothing. All the Professor did was take a history and look at a fresh sample of urine under a microscope. He measured leukocytes as 120 (as opppsed to +1 or clear on dipsticks I was getting). Huge amounts of epithelial cells and said there was ‘an army marching through the sample’. He said I’m his typical patient. On Oct I started double dose cefalexin and an antiseptic called Hiprex. I’m like a new woman. He said the courses of antibiotics are too short, testing inaccurate, instillations, stretches, dietary changes, d-mannose are unhelpful. He says urine needs to be very acidic not alkaline to kill of bacteria. I go back in Feb so he can test another sample and see how things are going. He is so down to earth, sensible and so far has given me my quality of life back. His rule is if someone thinks and feels they have a UTI, then they probably have. That interstitial cystitis is misdiagnosed over and over when it’s actually inflammation caused by uti. The diagnosis I got of cystitis cystica he said is not a condition on and off itself but just what a severely infected bladder looks like. I can’t recommend him enough If you feel you are getting nowhere. He has an NHS clinic at the Whittington hospital in London but I was so miserable I saw him at Harley st. Best spent £250 + train fare I’ve ever spent.

Can you maybe get to a walk in where you are today and ask for them?

Hello OP
I’ve used a tampon dipped in natural yogurt which gives some relief,
And for general gut health and getting your No 2,s to work regularly I take a small tablespoon of Inulin powder a few times a week in water at night. Health food shops for the powder or online i should guess.
Xx

It could be an inflammation instead of or in addition to an infection. I usually get this after a UTI and treatment. (Basically what Frozenteatowel said.
In any case, it's pretty standard here in the USA to prescribe Phenazopyridine for the pain along with the antibiotic. Ask your gp for it. It works pretty immediately to take away the pain and can be helpful for the lingering inflammation. Just be warned it dyes your urine dayglo orange/pink and the urine can stain anything it splashes on.

Phenazopyridine Is Azo and just had a look, you can get it on Amazon, if you have prime they reckon it will be here tomorrow.
It is amazing at getting you out of pain but yes the bright orange wee is startling.
It isn’t available otc here, do GPs prescribe it? They never have got me. We Brits are supposed to suffer.
My symptoms were all urethral too but my infection was E. coli/ E.faecalis and not mycoplasma/ ureaplasma as you are thinking.

You poor thing it's a terrible kind of pain. I don't know if it helps but I had this for a whole year and was in agony then it just suddenly went and never came back. That was 18 years ago.
i was initially diagnosed with interstitial cystitis but I'm not sure. Id recently started a new relationship and was having a lot of sex and I wonder if that had anything to do with it.