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

How much D-mannose should I be taking a day? At the moment I'm taking 2 x 1000mg capsules a day.

Widget I've never had IC but read your thread whilst suffering from sinusitis which stopped me from sleeping and had a thought that you can usually just buy antibiotics over the counter in some mainland European countries. Do you know anyone who lives or goes to Europe regularly who could check for you? Worth a try.

Good luck.

Hi Nat, I’m not sure I’m on the powder and just giving myself 3 teaspoons in water daily... you get a tiny scoop with it but I flung that and am probably taking way more than I should be. I’m also taking two triple strength cranberry tablets with this I got from amazon.

I feel like I’m going into a bit a depression the past couple of days, having my life back then this coming back full whack again so fast has really hit me. Laying in bed now feeling really tearful. I’m going to just eat bananas today, they are literally the only thing I know aren’t hurting me. Any type of liquid even water is making my bladder hurt so I’m going to cut down on fluids a bit as for me this just isn’t helping and I’m struggling to cope with the pain now. I do literally feel like my bladder bleeding and raw inside. I’ve lost interest in doing anything now and don’t want to make any plans because I can’t walk far. I’ve got a teddy bears picnic at my little girls school today and I’m dreading the toilet trips already.

Bloom burger that’s actually a really good idea, I don’t know anyone going there at the moment but I’m sure I will as the weather warms up. I’ll keep an eye out. I’ve been looking online and for anything legit you need a prescription. I’m too scared of getting anything further afield. Coming up to 5 months now... feeling like this is never going to end.

There’s a link on here for me to buy some Hiprex on EBay. Does anyone know if it could help me at this stage from their experiences or would I probably have to take a course of antibiotics before or alongside this before it has any effect? I’m not sure the process of it and when or for how long it needs to be taken. I was a little worried about it before because I read it turns your wee to formaldehyde and freaked a little about having that in my body but I’m guessing it just stays in your bladder. Any advice from anyone on this would be great

It says here it can be brought over the counter, does anyone know if this is right? Just to tie me over until I work out how I can see another consultant-

www.netdoctor.co.uk/medicines/infection/a6848/hiprex-methenamine/

I’m desperate so I just brought a 3 month course of doxycycline online... it seems to be the only antibiotic you can buy without a prescription in the uk provided you state it’s used for anti malaria instead 😬😬 I’ve read it can be effective in treating over 50% of utis... I’ll give it a go... those odds are better than some of the other ones I’ve been put on. I’ll keep updating x

Literally threw my children into their beds tonight... my eldest asked for cuddles but for the first time since I can remember I just put my hand up and said no... in bed now with a hot water bottle between my legs... it’s so hot it’s burning me to the point it’s all I can feel and that’s a good thing... feeling flat, low and in pain. Feel like it’s payibg me back for trying to get rid... is it supposed to hurt this much...? Think I’m going to have a little cry now just worried I’ll never stop

Anyone out there suffering from interstitial cystitis and currently having a flare up? It’s 1am and I’ve just taken a handful of painkillers knocked back by half a pint of bicarbonate of soda... my bladder is on fire. Would love to reach out to anyone else with this right and not feel quite so alone

I’m going to keep updating this for anyone who stumbles across it in the future and finds some help here... soooo my IC is still really bad. I’m trying to control it through diet but I’ve gone into a bit of a depression over the past couple of weeks and am doing some comfort eating which isn’t helping obviously. I got up 6 times last night to go to the loo, even the tiniest bit of urine in my bladder makes it sting like crazy.. it then makes my urethra sting once it’s come out and I need the loo again almost instantly.

Before this started I was going to the gym 3 times a week, taking supplements, making daily homemade smoothies and enjoying life. Now I can’t go to the gym because it puts too much pressure on my bladder and leaves me in agony after, I can’t take supplements or have smoothies (or anything other than water) or my bladder catches on fire. I’ve lost my muscle mass and feel tearful and tired all the time. I tried really hard to stay positive but I’ve gone to a bit of a dark place and am trying to get myself out of it, being in this much pain 24/7 is taking its toll, I’ve self tested my wee this morning and I’ve still got blood coming up.

My diet is all over the place, I’m not allowed the things I want, some things I’m too scared to try and things I can have I don’t know how to make interesting. Today I’ve decided to come off of gluten and sugar as a new trial or elimination. This morning I’ve had a glass of water, a banana and an egg. For lunch it’ll be some chicken and for dinner some bare fish and veggies.

My husband suggested I try this thing called ‘Huel’, his friends on it at work. The concept behind it in their about you section sounds amazing. They are plant based shakes containing all the nutrients we need to stay healthy. Apparently you can even live off them but right now I just want some of my health back. I’ve ordered their gluten free, sweetener free original powder... technically it shouldn’t have anything in it that can irritate my bladder but I’m still learning, it’s worth a try though right.

Doctors have me Naproxen to help with bladder inflammation which I’ve been knocking back, they’re starting to affect my tummy and I’m actually not sure if they were making my IC worse rather than better... so I’m sticking to paracetomal now.

Still waiting for my cystoscopy.

I’ve ordered some ‘AZO Defence’ from America, apparently it’s an antibacterial so may help cleanse my bladder a bit I don’t know.

I’m feeling more and more that this condition is almost 100% connected to my diet. I just need to find the foods that allow me to heal.

I’ll come back with some more info once these experiments are underway xx

Hi widget, this might sound random but have you tested for mycoplasma/Ureaplasma? It’s a bacteria that can live quite happily in the genital area until one day can cause issues it’s technically a Sti but nhs tests don’t look for it, I read online it can cause uti symptoms and pelvic pain might be worth looking into, I also have bladder urgency and a dragging sensation, microscopic blood and been given antibiotics that haven’t shifted it. I’m now thinking it might be that x

I thought of you OP when I had a stinging pee earlier (simply dehydrated) and I thought how I'd forgotten the real horror of cystitis. It's vile. You really are suffering and I am so sorry it's going on and on for you. Stay strong. All the best

Did you see this in today's Guardian?
A link in case you didn't.

https://www.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis?CMP=ShareiOSAppp_Other

@Widget123 was just coming on to post same link as buckingfrolicks .
Bloody hell - article explains it all !

Is this thread still alive?
Any update OP? I have similar symptoms and this thread has been so helpful I’m researching all the links posted. I’ve had problems since 2 March and just trying to wrap my head around all of this.

Does anyone know if prof malone-Lee still practices privately? Can’t find him online has he retired completely?

If you’re out there please reply I’m pretty scared and desperate right now. I have a 12 week old baby and struggling to cope

Not the OP but just wanted to say your not alone. Have you been to the dr?

@RosesM. Hi sorry to hear you have been suffering. There is a Facebook group called Interstitial Cystitis UK private support. They are very clued up about the Professor. I think he possibly might have retired or certainly from the NHS but I could be wrong. They will be able to help as I'm sure there is also a group just for his patients. I think his son may have taken over. It's a very good group where you can ask anything x

Thanks @nmg85 appreciate that

Yes I have been to GP and had multiple negative results for uni.

Also ended up in A&E twice (at first I thought it was urinary retention as I had only just had a baby and had that issue in labour)

I had bladder scans which showed my bladder was almost empty. Then had an abdominal ultrasound checking my uterus for retained products (again bc I had just had a baby) and checking kidneys, uretas and bladder - nothing abnormal.

Seen a women’s physio thinking it might be to do with my pelvic floor that hasn’t helped so far.

Referred to urology their disgnostic pathway involves treating with meds for overactive bladder first but I’m breastfeeding and baby won’t take the bottle which is making things really hard.

I am waiting for a CT with contrast.

I’m terrified it’s IC I’ve read so many horror stories I just want to be able to live a normal life and be a proper mum

Thanks @mummymayhem18 I will try searching that on fb

If it is IC there are lots of treatments you can try you just have to find the right dr in my opinion. I know it's hard but try not to stress as this often makes symptoms worse (does with me anyway). Have you ever had issues before? My IC can be flared with hormones etc as well

I really haven’t had any issues before just a couple of utis in my late teens early 20s which gave a positive dipstick result otherwise been absolutely fine (I’m 35 now) including throughout my pregnancy and for 5 weeks after then this suddenly started.

No one in my family has had bladder problems and I was otherwise totally healthy.

I don’t know if this is a bit unusual but at first I just noticed a bit of a drip sensation no urge or anything beforehand and not like stress incontince (sorry TMI I’m so embarrassed) it isn’t when I’m coughing/ sneezing etc it was just a very regular little leak like an occasionally dripping tap then after 2-3days of that this constant desperate need to urinate started. Is this unusual with IC does anyone know? I read it’s not usually associated with incontinence but otherwise symptoms keep bringing up things about IC

How long have you been suffering @nmg85 how long did it take for you to get your diagnosis?

I started getting symptoms in April 2012 and was diagnosed by June / July. Have been through 3 different consultants and now have an amazing one in Cambridge

Wow that’s a lot quicker than I was expecting I’ve seen lots of people have taken years to get a diagnosis. Was that based on cystoscopy results?

How are you now? are you able to manage it? I’m terrified I will lose my job because of it so anything positive you can tell me would be greatly appreciated

Yes I had 2 then and another a bit later on when went to another dr. I tried numerous different treatments but finally found something that works and have been in 'remission' to a point for about 2 years

@nmg85 thanks for the reply so happy to hear you’ve found something that works for you. Was it difficult to find a consultant who knew what they were dealing with? The urogynaes I’ve seen so far have been quite dismissive of my symptoms. If you don’t mind me asking did your cystoscopy show anything of note e.g. Hunners lesions or glomerulations?

@widget123 really hope things have improved for you also x