to ask if you have some secret weapon against cystitis after sex?

[stingyburnyfuck]

i mean this nicely but please please don’t come here just to tell me to wee after sex or drink cranberry juice. We are way past that.

I am absolutely desperate. Feel like I’ve tried EVERYTHING. I’ve posted in the past under another name I think and received some good advice but I’m back again. Is there ANYTHING you do to fight cystitis that I haven’t tried?? Anything? Please!

I have suffered my entire adult life, 25 years since I started having sex, with recurrent cystitis after sex. It starts 3-5 days after the sex and nothing gets rid of it until I take a full course of antibiotics.

I’ve seen specialists and am currently under the care of the private Malone-Lee urology clinic in London. Their treatment is long term antibiotics. I’ve been under them three years and spent an absolute fortune that I cannot sustain. It was life changing to be able to have a normal sex life with DH without being in agony days later. But they recently took me off the ABs to see how it goes - we’ve had sex twice - both times I have got cystitis and ended up on a course of ABs anyway. So I just don’t think it’s the long term solution and I can’t stay on ABs forever, can I?!

I’ve tried:
*Thrush and BV treatment
*One antibiotic every time I have sex (worked 90% of the time but again is that a long term solution?)
*D-mannose and cranberry - do nothing
*Urethral stretch and had camera up there
*Always wash and wee directly before and after sex
*No perfumed products or soap near vulva
*Drink shit load of water daily and limited caffeine
*Probiotics

Dipstick and lab tests nearly always clear (I know theory of these being unreliable) and I’ve had every swab imaginable and they’re always clear too so I don’t think it’s thrush or an infection.

the only thing I haven’t really done is change my diet because it’s only ever sex that triggers it - if I go months without sex I don’t have a twinge, no matter what I eat/drink.

feel fucking miserable and like I either give up sex or suffer forever.

Further to my post above, I think I remember reading somewhere that a little bit of lemon juice in water alkalises ( if that's the word) your urine, even though lemon juice itself is acidic, and that this can help. I'm guessing it may be worth a try as probably not going to harm?

Could you have endometriosis? It's not always obvious but I used to get cystitis all the time and since I had excision surgery for my endo I haven't had it back. Apparently they call endo and cystitis the evil twins because they often co exist

Yes ask for a prescription for hyprex and take vitamin c 500 mg at the same time.One straight after with a vit c and one 12 hours later. Makes the urine into formaldyhyde and the critter bacteria cannot breed in it. After years of recurrent utis I now have this on hand and take it the moment I feel a uti come on and it works wonders.It is amazing stuff and better on the body that anbx.

Here is this info-my young on the ball urologist put me on it after years wasted trying antibiotics having cameras shoved up my urethra, just relentless infections, I think I took it for 3 months twice a day to get mine under control but now I just take them when I feel that off feeling like one is coming on and the next day all symptoms are gone- a real magic bullet for me taken with vit c to make the urine as acidic as possible www.chronicutiinfo.com/treatment/conventional-medicine/hiprex/

I was crippled by utis monthly for about a year, ended up with a cystoscopy, and filled with fluid so they could see my bladder properly, the utis stopped after that! I don't know whether it was the fluid that cleared my bladder , as my doc said sometimes the bacteria can hide away in the bladder and flare back up once antibiotics have finished, or whether it was just coincidence.
Don't have baths just showers, and only use water to clean down there, I had recurrent thrush too for a while and since stopping using soap down there I rarely get it.

Sorry just seen you have tried hiprex and it has not helped. I know how awful it is it is so soul crushing for me 3 months of antibiotocs and the hiprex sorted me out and I cried with relief when the hiprex started working as I realised that I had been having low level discomfort for 5-6 years. I have to say I do not get the full effect without the vitamin C so you could try that- take it every time with the hiprex.

For those that say they suffer with UTIs, is the urine being tested each time and coming back clear?

I have been suffering for 18 months with what I thought was a UTI but all dip tests come back negative. I've suffered with it every day for 18 months now.

I don’t get recurring cystitis after sex, but, many moons ago I had an awful recurring bout (new relationship so lots of sex!) I had to go to an out of hours doc as it became a kidney infection. He was a specialist who had been studying it. He spent ages with me, drew me a diagram, said some women have a shorter urethra and this tends to cause it, bacteria doesn’t have so far to go etc. he drew me a diagram of the bladder like a cup and bacteria like a ‘dust’ sitting at the bottom of the bladder. He explained that weeing doesn’t do much to clear it as the urine drains down but the bacteria doesn’t all move due to where it’s sat. He advised stopping suddenly mid flow when weeing a few times, actively squeezing the muscles up. He said, the muscle jolts the bacteria up and mixes it better in the urine so the wee is more likely to flush it all out….if that makes sense?? I’ve kind of always done it since. Now I have ALOT less sex nowadays, and it could be nothing, but I only got it one more time after that (we were away and I didn’t do the excercise much) and never again. Might be worth a try?

For symptomatic relief, these tablets are fantastic. They are a local anaesthetic which dissolves in your urine so actually numbs your urethra as you wee. They are the only thing which actually does this, and quite often one dose will be enough to break the pain cycle for me (although if severe you may need to take it a few times). It's available over the counter in the US so I usually stock up at Walgreens when I'm over there. But I've just seen you can buy them online in the UK. Be warned that they make your wee very bright yellow/orange, almost luminous! But I've never found it stains the loo or anything (or even the bath when I've had to wee in the bath due to the pain)
uk.iherb.com/pr/azo-urinary-pain-relief-maximum-strength-24-tablets/63591?gclid=68f08486ff771877f2a2e70346b208be&gclsrc=3p.ds&msclkid=68f08486ff771877f2a2e70346b208be&utm_source=bing&utm_medium=cpc&utm_campaign=Product%20Listing%20Ads%20%3E%20United%20Kingdom%20%3E%20Acquisition&utm_term=4581115210829798&utm_content=Supplements

Starcourt do you mind me asking if you take the antibiotic immediately before sex, or if you have to have sex planned and taken the antibiotic hours before, sorry, but I don’t know how else to phrase it? 🙈

Also, although rare I’m sure, is there a limit to how many antibiotics you can take, eg being away on a 3 week holiday, might be different to dark, rainy wintertime at home 😂

Azo is great but don’t take them before you go to the GP for a dipstick test as it will dye the dipstick orange. I have some dipsticks at home and made this mistake 😂

@Literaturemakeslifebetter
That's really interesting, thanks for the hiprex info. I love the formaldehyde bladder lol! Kryptonite for the little bastards.

Interstitial cystitis is a myth.
If you have symptoms you have an infection but dip tests and cultures are notoriously unreliable. If they are looking at your fresh urine under a microscope and nothing then it’s clear.
This thread made me laugh. OP has spent thousands on private treatment with the absolute authority on this field, the late great Prof Malone Lee. And posters have seriously told her to wee after sex 😂

It's like when people say about wiping front to back
I bottle wash, if I was any cleaner I would be a bottle of bleach

wow, this thread has obviously struck a chord with so many. What a bloody miserable condition it is! Lots of hugs to you all. Thanks for taking the time to comment.

I’m now halfway through a course of ABs (had them at home) after a week of drinking water like a fish (or whatever drinks a lot of water), trying all the home remedies etc to no avail. Surprise surprise I feel so much better physically but mentally pretty shit. This is clearly going to be my life forever.

Think I may have to go back to one antibiotic after sex for a while and see how that goes. Just hate always being on antibiotics!

someone on the previous page (so sorry I can’t see it now) said how hard their DH is finding the thought of it being linked to sex and trying to make sex as short lived as possible to avoid infection. I do relate to this. Ended up jumping DH this evening (sorry TMI) we figured I am already on the ABs and the thought of having sex when not on them is too terrifying. 😞

Some interesting stuff on here though thank you. @Literaturemakeslifebetter IM on four Hiprex a day. Would I take vit c every time? @Northernlassie1974 Thanks perhaps will give that a go.

i am wondering about seeing a pelvic floor physio as it appears that can be sometimes linked to cystitis problems? But again why would antibiotics clear it if it’s pelvic floor rather than infection? grr

@HalfasleepChrisintheMorning @PeloFondo i know. I just think so few people understand what this is like as a chronic condition so they are well meaning but honestly if I peed any faster after sex I would literally just wee as soon as DH pulled out! If I cleared myself more I’d have no skin left! Sorry for yuck images and I don’t mean it rudely but if you have come here to suggest weeing after sex I can assure you… I do. Religiously. The only time I have EVER not weed after sex was when I lost my virginity… and got cystitis for the first time 😞

so sorry if I haven’t replied to your post, can’t keep up, but I have read them all and noted tips down xxx

I've just started a third course of antibiotics today. Mine seems to start with my period which is helpful as I'm "is this a UTI or period cramps?"
I'm so bloated, and I have constant pressure in my stomach all the time

I don’t think repeated antibiotics is a good route.
I wonder if speaking to a gynaecologist/gp about vaginal ie topical oestrogen cream ?
I know it helps menopausal women who suffer from cystitis as a result in decreased hormones.
maybe this could help.

Secondly, make sure your partner is clean, actually washed before sex.
This is only practical if in a relationship obviously!

Sounds awful, all the best !

@stingyburnyfuck that sounds so rubbish. I am prone to UTI post sex but not even a tiny bit near what you describe.

I don’t have any suggestions other than make sure you take ibuprofen and paracetamol (if you can take both/either) it sounds so stupid but I didn’t ever really think to take analgesia for a UTI but now at the very hint of one starting I start regular pain relief and I don’t wait until the pain gets too bad. Doesn’t 100% help but I can manage much better.

Hope you feel better

@Jessesgirl13 i am so glad you’re doing better. You don’t sound dramatic. I know exactly what you mean about getting your life back. When you get a flare now do you take a course of antibiotics or do you manage it in another way?

Thanks for kind words and well wishes everyone 😘

Not sure if someone has mentioned this as I’ve only read your posts OP but I’ve read a lot about mast cell activation syndrome and histamine intolerance causing cystitis in people. I know you end up needing antibiotics but maybe there could be some initial triggering from mcas. Do you have any other symptoms of mcas or histamine intolerance? You could try mast cells stabilisers and antihistamine

@User963 thats a new one on me! Thank you for raising it. Will ask my GP - got quite a list thanks to this thread!

Yes take a vitamin c with every hiprex as it increases the acid environment, I do 500 mg vit c each time but maybe do 250 if you are doing 4 a day as I cannot remember the max vit c a day but I know that those hiprex are much more effective with the vit c and the urologist confimed that when I mentioned it.

Any of us experiencing these recurrent infections know how misery making they are, they really affect quality of life, I also took a abx every time and that also helped so keep doing that I would say. If this condition affected men there would be a lot more research into it.

I don’t think your gp will know much about MCAS. It’s only relatively recently been discovered.
vitamin c is a natural antihistamine

Yes I have an emergency supply of cephalexin that I take if I get a flare. Only really had to take it once this year though. I find that I get increased symptoms when on my period but if I just make sure I'm drinking enough etc it goes by the time its over.