does anyone else have interstitial cystitis?

[LoveAndSqualor]

Wondering if anyone can help ... About two weeks ago, found I was needing to pee ALL the time. I went to the doctor's, thinking I had cystitis (though it felt different: no burning, just constant feeling of needing the loo), got antibiotics. They didn't help, so I went back on Monday, and he tested for a UTI, but all clear. He thought I might possibly have pelvic inflammatory disease (though highly unlikely, as no real chance of an STD) and stuck me on killer antibiotics for that. I've been taking them, but no better at all - constantly feeling like I need to pee, no relief when I do, general unomfortableness ... ugh. The other thing he mentioned was interstitial cystitis, and looking at the symptoms, it does seem a very close fit . I've also therefore cut out caffeine, alcohol, fruit juice and so on for a couple of days, but again no effect yet.

Does anyone else have it? How do you manage it? It's driving me NUTS at the moment and making me feel really miserable ...

@Ellapaella this is like me!! Have you considered a Bladder instill?

No, I haven't heard of that? Would you recommend?

@Ellapaella I’m not alone then in the doctors not taking symptoms seriously! I’m currently waiting for a call back from my doctor right now. She said before at the start of all this that it may be the start of endometriosis but although I have heavy periods for a couple of days they are not at all painful! My pain is the entirety of the month with the exception of being on my period! The bladder symptoms for me started at the end of July this year but I am also someone who has suffered since a young adult with frequent UTI’s.

@Aleksandra1990 interestingly I would notice a reduction in symptoms around the time of my period. But 2-3 days after they would come back again.

@Ellapaella that is really interesting because you always hear that people with endometriosis have debilitating periods! Do you get sharp lower abdominal pains? My GP had re-done the referral for me to have a private MRI.

@Aleksandra1990 no sharp pains - I don't even get symptoms all the time, more like 'flare ups' every now and then when I will have quite severe pelvic pain and cramping (but not sharp) which triggers the urinary symptoms. I also have associated bowel symptoms when it's bad.

@Ellapaella well we will see what my MRI brings up, I am so scared. My pain in defiantly sharp but doesn’t last long.

@Mrbumpoid I asked me doctor today why she is so sure it’s not cancer and she said they base it all on statistics like my age, the fact my bloods have shown nothing abnormal etc... I just have no idea what else this could be! My urinary symptoms have been better yesterday and today though.

@Ellapaella I will let you know once I've had it done!

@Aleksandra1990
It's good she explained that to you. Has it helped your anxiety at all? Did you say above that you have a private MRI coming up? Have you done any of the diet stuff?

@Mrbumpoid yes she’s done the referral today for the private MRI. It hasn’t helped my anxieties no because of the pain I’m feeling at the minute, I’ve now convinced myself I can feel lumps in my lower back and the pain has been in my lower back this week! I have ordered an online food shop today with all of your listed ingredients to try. How are you feeling at the moment?

@Aleksandra1990 it's a vicious cycle bc the pain will bring on the anxiety and the anxiety will worsen the pain 😫 Are you on meds for your anxiety? If not then look up St Jon's Wort. Not tried it myself but read a lot of people with these symptoms have tried it and it helped PLUS will help with your anxiety.

My symptoms have lessened perhaps bc I know I’m having the bladder instil so body has relaxed. Or it might be the meds - who know. However, this evening my 3 month old has become unwell and was being sick and bad stomach and crying a lot. It was stressing me out and I started needing a wee constantly with nothing coming out 😫

@Mrbumpoid no I am not on medication, I only stopped breast feeding recently but have tried a few drops of CBD oil.

Oh no I hope your baby is ok! It’s horrible when they are poorly like that! You feel so helpless! Isn’t it strange how your body felt like that almost like the stress of your baby being poorly caused you to feel like that! I felt fine in the urinary department all day yesterday then right before bed I forced myself to wee and then my urethra started feeling out of sorts again!

@Aleksandra1990
Mine always gets worse at night so see how you go today?

@Mrbumpoid how are things today? I hope your little one is better? I’ve got sharp pains in my back now in my kidney area and further down...

@Aleksandra1990 do you ever drink sparkling water? I had kidney pains on and off for about 18 months. Ultrasound showed nothing, sometimes I had to call 111 bc it was so bad and I could feel then passing - severe pain going from the back around the side and to the front. I’m thinking I passed them by the time an ultrasound came round. Anyway all tests came back negative. Then I was getting my lashes done one evening and my beautician asked if I drink sparkling water - which I did. So i stopped and so did the pain. Just shows that GPs know absolutely nothing outside of their manual 🙄 She is a bit better today which is good and we have managed to go out. My pain isn't really there but I am needing to the toilet a lot but I’m ignoring it!

I had this for around 5 years in my early to mid twenties. I went to the doctors probably every 2 months hoping for some tests or answers but it took around 3 years to be referred. Most of my do doctors apppintments they told me the pain was psychological and it was likely that I was imaging it....not what you want to hear when you are sat up most of the night being uncomfortable and going to the toilet every 20 minutes or so. I have a urine test carried out at each doctors visit and every single one came back clear. One doctor even wrote down a condition and told me to go away and research it and that was all he could offer... I found that my symptoms flared up for around 6 weeks on average at a time and during that time I would be totally miserable with lack or sleep and lack of answers as to how to manage it. I had a cystoscopy (not sure how to spell it!) which all came and back clear and I was discharged almost straight away from the consultant so was back to square one! I felt pregnant last year and now have a 4 month old baby and haven’t experienced any symptoms in around 16 months so I’m not sure whether it’s something that I ‘grew out of’ as such. I totally sympathise with anyone dealing with this and the lack of support you maybe be experiencing.

Please ignore the spelling mistakes I currently have a head cold and am feeling rather drowsy!

@Jellybum2019 I've read a lot about women falling pregnant or having their period and it going away. It must be hormonal too. Mine gets worse with stress. I refuse to be ignored or sent away and they started getting annoyed with me so had everything done fairly quickly. But they are absolutely rubbish. It is actually embarrassing how rubbish the GPs etc are unless you pay them. People commit suicide with this condition. GPs and docs are told not to spend money so they will try all the cheap options first and long it out to save money. Only one consultant out of numerous GPs, drs and consultants actually does his job bc he cares. The rest are either forced into it by their parents or do it for money.

Yes I also found stress to be a factor, but not always the reason for a flare up. I got stressed when I felt it coming on knowing that it would be here to stay for a good few weeks before I got any relief! The most frustrating thing I found was just not knowing what the root cause was to attempt to manage it, I wasn’t even looking for a cure, I just wanted some support on managing it and ways to find some relief even if only short term. Some nights I literally sat up right until the early hours because I was so uncomfortable I couldn’t sleep. When I went toilet before I even sat back down again I felt uncomfortable pretty much instantly again. I wish I had some advice to offer, I totally sympathise with anyone experiencing this. The amount of times I came out of the doctors crying in my car to my mum/partner in frustration that once again I had another appointment where a doctor didn’t take it remotely seriously. One advice I got was ‘next time you feel like you need to go wee, rather than go, wait an extra 5 minutes and then go’...

It’s so reassuring to read your comments and see that I’m not at all alone in how I’ve been feeling! @Mrbumpoid do I don’t drink sparkling water, I literally drink plain water, organic cranberry juice and camomile tea and that’s it.

Interestingly I was speaking with my husband last night and he said sometimes he gets this feeling where he constantly needs to wee and his urethra feels odd but it doesn’t like as long as me as my flare ups also last several weeks! My symptoms disappear when I’m on my period and it is the only time I feel normal! I had a recent blood test to check all my hormones and that all was completely normal. I don’t know if a lot of mine is stress related, I have had somewhat of a turbulent year... we got married in Dubai in April almost immediately after returning to the UK my mum was very ill and almost died... that’s an ongoing health issue with my mum that causes me a lot of stress... we are also just about to move house and that’s been a process! I seem to feel my best when I am distracted and around friends! But I also know my pain is very much real at the same time so I just don’t know what to think... 😔

@Aleksandra1990 this is exactly what I was going through this year. I also started to wonder if it was all in my head because there seemed to be no answer to why it was happening. Have you tried the D Mannose?

@Jellybum2019 yes it's horrible and I agree - just some management rather than a cure. I do think they know more about in now - over the past few years. But to get it sorted you need to go private bc otherwise you're waiting to "see how this 12 week course of antibiotics go". It's ridiculous. It's literally making people housebound

@Aleksandra1990 I've heard the cranberry juice is NOT good!! It's a big no no! I'd cut that out straightaway if there isn't an actual infection showing up?

Avoid drinking cranberry juice as this will make Interstitial Cystitis symptoms worse as the bladder is inflamed without a bacterial infection present.

Yes it is so difficult and I agree with everything you have said there about stress and feeling better when distracted. I will let you know how this bladder instill goes! Maybe it is something you could try

@Ellapaella I have the tablet form of D mannose, I took 3 a day for a week but didn’t notice any difference at all.

@Mrbumpoid how come the cranberry juice is a big no no? I know that the stuff they sell in supermarkets is awful because it’s full of sugar but I was strongly advised to drink organic cranberry juice every day but a herbalist it tastes ghastly and totally different to the cranberry juice you buy in the supermarket. I thought cranberries in general were good for the bladder?

Perhaps your one is okay then!

Have a read of this -
www.ic-network.com/should-ic-patients-drink-cranberry-juice-no/