Interstitial Cystitis or something else?

[LJH93]

Hi!
Background info (I'm 29 & F), I had my first ever UTI when I was 17, brought on by being intimate, blood in my urine etc the works, It never really went and same old same old, my urine wasn't showing infection and I was kind of left to get on with things. I managed it fairly well, drank lots of water, would always feel like that would ease the pain, wee'd after sex etc. Anyway, cut to present day, and it's important to note this is something I've managed since I was 17 as it never went away! I recently had a cervical screening, and had an influx in symptoms for a week but it passed. Through what I believe to be stress, has caused another flare, I'm nearing week 3.
My symptoms;

• An urge to wee which isn't relieved after going, Important to note I don't wee a lot, maybe 4-5 times a day and drink lots, wee's don't burn or hurt etc, it's just that urgency doesn't go.
• Lower tummy pressure.
• Slight discomfort of the vulva, the kind that makes you want to sit with a hot water bottle between your legs.
• I've always had almost immediate symptoms following drinking orange juice, tea and weirdly Ribena is a killer! But I do the obvious and avoid them.

I've just purchased some D-Mannose and today will be my first day fully taking it, and have the dr's tomorrow. Wondering what my plan of action should be, do I demand strong and long antibiotics incase an imbedded UTI has raised it's ugly head? Has anyone got through flares before?
I think I just need a proper diagnosis so I can manage it and be educated, So irritating that sex etc hasn't caused this and more so what I feel emotional stress, it's hard to prevent and manage big life events, I'd say it's unavoidable and it seems my bladder struggles the most!

Hi! I know this was a few months ago but how are you doing now? Your story rings so true to me. I have had the same symptoms for over two years and was diagnosed with IC in October following a cystoscopy. I have been having bladder instillations but sadly no relief as of yet. My symptoms do go up and down but I am never symptom free, they linger at a lower level all of the time. I’m totally at the end of my tether with it. I totally agree with the emotional stress thing - I think this is the biggest factor which affects me too. I wondered if you were feeling any better and what helped?

Hiya - I have sent you a direct message x

Just to add these symptoms can be an embedded uti as mentioned. But getting treatment is difficult I was seen by Prof Malone-Lees team as GPs and urologists are not up to date with the best way to treat this. IC basically just means painful bladder it is a description of symptoms rather than a diagnosis. Hiprex is also something that has been shown to be helpful in treating embedded utis

I have an IC diagnosis- giving up caffeine made a huge difference to me.

@ecg15 sorry to wade in. How far in to your bladder installations are you? I’m on week two and so far I feel like they have heightened my symptoms even more. Mentally I am so low from it, as it’s taken a few years to finally get a cystoscopy, diagnosis and now a bit more direct treatment than the diet changes and oral medications. Reading your post that you haven’t had much relief so far doesn’t give me much hope. I know they say you need to learn to manage it but needing the toilet urgently numerous times day and night is exhausting and embarrassing it’s left my self esteem in a very low place. I hope you start to notice some changes soon.

Hi @thinkingoutloud23. Sorry you are suffering. I have had my first six treatments of Ialuril instillations - I have to wait a month now and my urology nurse says if no improvement she will refer me back to Urologist. After the most recent one, I felt it really irritated my bladder and had the most terrible flare. I’m wondering whether it’s worth the risk of sticking with it and seeing if a few more can help, or just cutting my losses and being referred back to the urologist. What instillations are you on? I’m sorry I’m not giving you much hope - I was the same as you, finally diagnosed following cystoscopy which I had to spend over two years asking my GP to refer me for. I hoped the instillations would be the thing that worked for me. Feeling totally hopeless about the whole thing now.

My UTI problems started in my late teens, and Im 50 now. Ive had two hospitalisations with pyelonephritis (kidney infections) in my life, one resulting in sepsis (thanks NHS for dismissing me). If I could go back in time I would definitely insist on referral to a specialist and see if I couldn't find some proper help earlier. I suspect I have ecoli embedded in my bladder wall in a biofilm which is why it never fully goes away. I now have been on a repeat prescription for Nitrofurantoin for several years (after the last hospitalisation) and its the only thing that works for me. Although long term use comes with many dangers, so there is no easy answer. I take 1 after sex which keeps it mostly at bay, but if I do start getting discomfort I'll take 2 and that stops it. Need to keep hydrated as dehydration flares it as well. Be careful with D Mannose, for me it masked the UTI symptoms which is how I ended up with it in my kidney again. Havent tried Hipex, but I have some and will try as many people say that helps.

Also blackcurrant is known for its bladder harming properties which is why Ribena flares it. Orange juice is acidic which also causes bladder inflammation. But drinking baking soda in any liquid is alkaline which is soothing.

Hi, I’ve just come across your post. This is how I’m feeling now and I’m feeling so low can’t stop crying. Did it all settle down for you? if so please can you tell me what helped? X