Cystitis and the feeling of doom

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Got another bout of cystitis and I feel genuine, horrible doom. Doom that I will never feel well again and the antibiotics won't work and I'll get the sack for taking even more time off work and everyone will think I'm a massive baby with 0 pain threshold.

Please reassure me that I'm not the only one who can't cope with life when this happens? I've just laid in bed and cried for 2 days. Please send positive recovery stories (I know I will recover but my negative thought cycle is spiralling.)

I rarely get cystitis at my age, but a month or so ago, I woke up to that bloody awful feeling and thought shit, what am I going to do at this time of night, and nothing in the house to help ease it. I frantically looked up home cures and came across the recommendation of taking bicarb of soda - 1 teaspoon to 300ml of water and drink immediately, and it bloody worked. I was so relieved. It also recommended holding a hot water bottle as close as you can to the area, which helped soothe it and send me back to sleep. Cystitis is torture!

Seconded. This stuff has changed my life!

yet another vote for d mannose
and also improving fluid intake, Limiting booze and cutting sugar down in diet (I’m rubbish at all of these but they do make it better)
also used to take a small spoon of bicarbonate of soda in glass of water
had recurrent cystitis for 10-12 years to age of 34 ish. Under control now. Haven’t had for 3 years.

Yes! I've had problems with cystitis for most of my life, even as a child. It grew worse once I started having sex though and alcohol doesn't help. I've tried every home remedy possible over the years, and no doctor has ever taken me seriously beyond prescribing me antibiotics. Once I had my kidneys looked at to see if it was those, it wasn't. I've tried to get it looked at more closely, but no luck.

I cant recommend anything as foolproof, but when I get the first feeling of DOOM I can sometimes catch it by flooding my system with water. That's only if I'm lucky though.

It really is ignored since its a 'woman's thing'. Hope you feel better soon!

Sweet Cures. I take 4 tablets regularly during a flare but that rarely happens these days. It used to be after sex ALL the time.

Please please google Professor Malone Lee’s work and CUTI (chronic UTIs).

What everyone is saying about D Mannose etc. is correct and will help but ultimately, this is a little-known condition (as who cares about women’s issues) where the UTI bacteria is embedded in your bladder so you will keep flaring up. The only way to treat this is with long term, high dose antibiotics. I am currently on them, after having many, many UTIs in just a few months and realising something was wrong. Took me a long time to find out about his work and this condition unfortunately and I urge you to google this for yourself!

Just over a year ago I was in so much pain, almost weekly. Now I am 99% fine!

I never post on mumsnet but had to log in to my account to post about this as I feel so strongly about letting women know about this.

The guardian wrote an article about it and it is being featured more regularly in newspapers (like Reader’s Digest).

I got mine from a company called Sweet Cures. The tablets were massive though so not that easy to swallow. They also make them in a lemon powder form that you could mix with water.

A teaspoon of bicarb mixed in water worked much better than those expensive sachets. Tasted disgusting though. Like drinking seawater. I'd have to hold my nose and down it!

Are you on the pill? When I came off the pill I stopped getting cystitis (touch wood)

@m0ntybojangley someone posted the Guardian article up thread 👍
Its such a relief there’s a glimmer of change. I had them up to once a month. And don’t mention the useless hell that was cystoscopes and dilatation 😣
I’ve found the medic who I heard on the radio talking about a better way to diagnose and treat www.chronicutiinfo.com/treatment/conventional-medicine/uk-treatment/dr-anderson/

Cystitis is evil. I used to get it all the time. I hope you get better soon.

My gynecologist told me to always pee within 15 minutes after sex to avoid cystitis and it has really, really helped.

Yes Dr Anderson also treats them!

I really feel like I have found a new lease of life, I had no idea what kept happening and my ‘specialist’ was absolutely useless. Made me have a test to see how much urine I retained (forgot the name) and it was one of the most painful, traumatic experiences of my life. She then was about to give me a cystoscopy and diagnose me with IC…

After a lot of research, found out about CUTI and very glad that I did. It is so stressful though to be experiencing something doctors refuse to take seriously.

It's horrible.
I eventually got prescribed an antibiotic to take after sex and the cystitis stopped. Now mostly I don't bother taking it and still haven't had the cystitis back so I seem to have somehow broken the cycle.
I hope you're feeling better soon, I know the sense of doom well.

I'm in the thick of it too. Maybe we should have a support thread as there have been quite a few similar threads about this recently.

My reading up about it has led to me taking hyprex (keeps bladder acidic which bacteria don't like), vitamin c (same) various herbs, D Mannose (all roads lead there as it repairs the lining) and high doses of trimethoprim as the infection I have is susceptible to it. All roads also lead to the late Dr Malone Lee's team in Harley Street who has apparently given many women their lives back. There are lots of his lectures on YouTube.

But it's very hard to be in the think of it with that feeling. I know.

Oh and lots and lots of probiotics.

Dr Anderson isn't taking on new patients.

Have you had a blood test for diabetes? I had about eight months of constantly recurring UTIs last year - nothing since my blood sugars sorted.

I wouldn't bother with anything that's not a prescribed drug! You need better antibiotics. I had recurrent cystitis and ended up seeing a consultant. They checked my bladder didn't retain pee and gave me a course of stronger antibiotic plus a pack of antibiotics which I just take one pill of every time I have sex.

Sorry to hear so many of you are suffering with this so frequently. I have had several occurrences over the years, but the one I am suffering with now has caused me quite heavy bleeding (like a period) and I wondered if anyone has had similar? I am half way through my antibiotics but was only given a 3 day course this time which I’m sure is shorter than usual.

Dipstick tests show up red blood cells when I have a UTI but it isn't usually visible. My daughter once had one where her wee definitely had a pink tinge to it but nothing that looked like a period. I would give your GP or 111 a call to check just in case. Hope you feel better soon

Arent you all lovely thank you so much. I'll read the articles they look so interesting. So sorry that so many of us suffer so badly!

@Bobbobchampagne that doesn't sound right at all. I got a 7 day course of antibiotics so maybe you need to go back to the GP?

Ooh and I'm not on the pill and don't think I've been checked for diabetes recently although I am always thirsty?

Think I forgot to say I've got a dodgy thyroid too so I take thyroxine.

Sympathy from me too. It's rubbish and been a lifelong problem here too. I think d.mannose is wonderful and definitely worth a go. I get mine from Sweet cures. I'm in my late 40s now and going through the menopause. I am on vagifem pessaries which are also helping

I keep getting this and have urine in my wee sometimes. It's absolutely the most painful and uncomfortable feeling. Hope you are okay OP

Thanks so much everyone I really appreciate it. Felt a bit better last night but awful again today