Interstitial cystitis panic

[Charlylau2412]

Hi, I was wondering if anyone can help me, I really struggling emotionally and in a lot of pain with what I believe is interstitial cystitis. I have seen a specialist and I am on the waiting list for a cystoscopy which I don’t want to go through. I feel hopeless. All I read is negativity. on the medical sites it’s just all negative and like there is no end to this. I’m a mum of two sons, a singer, a girlfriend and I miss my old life. I’ve been in 24/7 agony now for 6 months. slight flares before this. Please can anyone offer any help, a hand hold or just some hope.
I would really appreciate it right now.
thank you

I was told it was likely I had interstitial cystitis. Prior to cystoscopy was advised to avoid acidic things like tomatoes, citrus, fizzy drinks and I think it helped a bit. As part of the cystoscopy I had a hydrodistention. That was like a miracle cure for me, symptoms disappeared immediately.

I have had a recurrence of symptoms a few times since (procedure was nearly 2 years ago) but took Azo Urinary Pain Relief tablets that I'd seen advised on here (bought mine from Amazon) for a couple of days and all cleared up.

Look in to Chronic UTI as Interstitial Cystitis usually is what they tell you it is when they don’t know what is wrong with you.

I am so thankful I investigated as I wasn’t prepared to go down the invasive procedure route and I am now symptom free.

@MissCeltic what did you do to become symptom free?

I'm so sorry OP - I'm afraid I can only really offer sympathy rather than advice. I am very prone to cystitis bouts although mercifully have been free for about a year. I now buy Nitrofurantoin online and keep stocks at home so that if I feel it starting I can take it immediately.

There is absolutely no pain worse than having cystitis whilst being told "it'll probably clear up on its own/ohh it's uncomfortable, isn't it" or similar. I have literally sobbed on the floor of my local walk-in, begging them to speed things up and give me the drugs (this was before I realised you could buy it online). I also once unleashed my rage on a pharmacist who'd told the prescribing nurse, on the phone, that he had the drug in stock, and then changed his mind when I got there to pick it up. Honestly I was shaking with anger...he checked again and found it...just couldn't be arsed to look properly/didn't think it was important!

It's absolutely incredible how long it's been seen as a nuisance (i.e. women's problem) rather than a recognised medical condition that can be extremely painful and debilitating.

Wishing you the very best of luck in making some progress.

I had repeated urine infections and what I thought was interstitial cystitis, I have only one fully functioning kidney so need tot be very careful.
The cystoscopy didnt show anything up, my GP is useless so I did my own research.
The first thing was to take D Mannoose which fights UTI’s naturally and to have acupuncture to stimulate the spleen.
I then looked at all the foods and drinks that irritate the bladder, for me it was caffeine, any fizzy drinks, strawberries, raw tomatoes, tangerines and pineapple.
The food and drink eradication was miraculous, I feel like a different woman.

Why don't you want to have a cystoscopy?

About 25 years ago I started getting urine in my blood and pain when urinating like my bladder was being squeezed. It would last a few days and I got the episodes every few months.

I had a cystoscopy and the episodes stopped for over 10 years. The consultant said just having the cystoscopy cured some people.

I then had another cystoscopy and haven't had another episode since.

I was told I had IC but it was an undiagnosed infection had to go to prof Malone-Lees team to get treatment but am now symptom free.

@Marlowandmerlot I've just looked them up and seen references to them doing better tests that aren't usually done by other doctors - what test are they referring to please?

They test a fresh urine sample and they loom under a microscope and count the number of pus cells and epithelial cells.

There is more info here cutic.co.uk/