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.

There's some really helpful advice ref DMannose here, OP. You have to be really quite meticulous when taking it. Apologies if you've already tried this but I was very surprised how meticulous you have to be for it to be effective!

www.sweetcures.co.uk/blogs/health-hub/how-much-d-mannose-should-you-take

Quercetin supplements in addition to D-mannose and cutting things out of my diet was the only thing that worked for me.

As for you sex was my only trigger but the diet creates inflammation in the bladder so you need to cut out anything that triggers that.

I was sceptical but the gynae team gave me a leaflet and I tried it and I’ve only had one UTI since (after I had been much less careful with diet). I went straight back on the supplements and cut out high histamine foods, sweeteners etc and haven’t had one again.

I was a frequent sufferer starting with honeymoon in a hot climate for years and years - not exclusively after sex but v often - got pregnant ten years later and never again. Cystitis out. Not saying you should get pregnant as a secret weapon, but just another anecdote that maybe there's something in the hormone cure - although possibly it was the literal stretching/rearrangement of the whole area when I gave birth but think more likely the hormones.

There is no delicate way to put this so:

is everything that goes near your vulva clean with no soap residue?

if no penetration (regardless of with what) takes place but you still have sexual activity do you get cystitis?

I sympathise hugely OP. I don't do anything that hasn't been covered already (v strict hygiene for both me and husband, D-Mannose, emergency ABs ALWAYS in stock at home, never ever having sex if I ever have the tiniest need to wee).

I used to get cystitis fairly regularly and I remember last year frantically looking up the NHS guidance (even though I knew there was rock all of any use on there. I was absolutely fucking furious to read the text on there - "usually more of a nuisance than a cause for serious concern". Honestly I nearly broke a window. Very interestingly, I've just looked up the same page and that phrasing has changed! I checked on the Wayback Machine - both versions attached.

You've probably thought of this but could you limit sex to morning only so you've got all day to drink and flush?

Also I swear if I start I feel a niggle and eat a clove of raw garlic it helps get on top of it.
My most recent infection that actually had positive leukocytes on the dipstick actually went by itself after a few days of eating vast amounts of raw garlic and a friend had a similar result after I suggested it.

I have to take a single antibiotic every time I have sex. This works very well and it seems to be a workable long term solution for me. I don't get a huge amount of action so one pack of Macrobid tablets lasts a while

So sorry, so many of you wonderful people I can’t keep track of usernames to tag all people in. Reading and appreciating every single reply!!

For those asking about pelvic floor stuff, I try to double void. Have always had a v active bladder and because I drink shedloads trying to stave off bloody cystitis I go all the time!

@mynameischloe fhanks for that. V interesting. Have to admit I haven’t been using it in such giant quantities! Maybe will try it…

I have three DC (TTC was a complete bloody nightmare with the cystitis) so that answers both the pregnancy idea and the morning sex idea 😂

@BaseDrops no cystitis with just fingers or clitoral action (sorry for TMI) - it’s the full Monty that does it, condoms or not

a few people have asked if I’m on hormonal BC. I am not. Have been in the past. Never saw a reduction in infection frequency no matter the birth control

I wee immediately after having sex. I don't know why but doing that seems to stop me getting it and if I don't do that I get cystitis

@Trisolaris what did you cut our?

@JackTorrance i would be so self conscious about the smell!! 🙊

So pleased to see this thread and know I'm not alone. I've been having issues for around 10 years, but much worse since I met DH. I get the odd episode that isn't triggered by sex, but sex is definitely my biggest trigger. I'll have a look at Uromune!

This was my aunt for years (step aunt ten year age gap, we're close).. Hers was only triggered by sex, but the only thing that stopped it was completely cutting out alcohol and caffeine didn't matter what else she'd tried medically or sex wise. After about 18 months she started having one cup of coffee a day, thinking she'd broken the cycle. Next time she had sex boom cystitis again.

Fellow Prof Malone patient here!

My cystitis isnt due to sex but an embedded infection.

Don't have much to add, but just wanted to echo previous posters that food could be a trigger too. I have no idea what my trigger is, but if I ever have to fast (even if its due to norovirus etc!) I don't get cystitis symptoms!

@stingyburnyfuck Not gonna lie, I honk when I take it! But it's the lesser of two evils really.

Hugs for you, it's awful. Since you say antibiotics are the only thing that work, is it possible that one or two tablets of a prophylactic antibiotic right after intercourse might work, rather than a full course starting 3 days later?

Also, since your urine cultures are often negative, I am wondering if what you actually have is Interstitial Cystitis ("IC"), or something along the same spectrum, but perhaps not visible by scope yet. I have something similar and my urologist called it something like irritable bladder syndrome (not an official diagnosis, but basically all my doctors agree it's on the Interstitial Cystitis spectrum, but not "bad" enough (yet) to be IC, that's why my urologist came up with this term). The fact that you say your urine cultures are often negative also makes me wonder if what you have is IC.

For me, when I get a flare, it can take weeks for it to subside.

IC management would include limiting wine, caffeine, acidic foods, and spicy foods. Eliminating these (mostly) from my diet has really helped me and if I do eat any of them, I can feel it. I know you don't want to give up your glass of wine but maybe you can try it and see if it helps at all.

In addition to what others have mentioned, I've found that it helps me to avoid ever becoming constipated as this makes it hard to fully empty my bladder. I also try to shower right away after exercising and avoid clothing that is tight around the area.

Like you, I worry that the only way to manage this eventually will include abstaining from all sex and I feel a bit anxious about that. You give up all food that tastes good and then you give up everything fun, and your life STILL revolves around making sure you go to the bathroom every hour.

I read your original post (haven't rtft) and the thing missing from your list is: pee after sex.
If you just lay back in bliss and pass out you will get cystitis.
You have to pre after sex

@Aworldofmyown
I'm sorry I can't suggest anything but your practice of antibiotics before xxxxx, but my colleague at work suffers from exactly the symptoms you have described, and has been told it is Interstitial Cystitis, unfortunately there is no cure, you just need to manage the condition, which sounds like a terrible nuisance. It sounds as if you are doing everything possible to help yourself, you probably know more than medical professionals.

second getting a bidet.
wee before during and after sex.
wash after sex
multi Gyn after sex + plus on the anus too.
AND - which I don’t think has been mentioned …. Ice pack to the Fanny after sex, like a eye mask ice pack. Really helps.

Thank you @aloris hugs back. And others who have suggested looking at my diet. Feel v childish and resentful at thought of giving up my coffee, chocolate and wine. But maybe worth doing for a month. Waaaaah

thibk prophylactic ABs after sex again may be my next plan. Malone-Lee clinic did suggest this if triggered by sex again. Sigh

@Jessesgirl13 a gentle bladder wave to you! How long have you been in treatment? Have you ever tried withdrawing ABs? The clinic is fabulous but I never seem to read any stories of people who are cured and no longer need treatment 😞

I had a urethral dilation under GA and then was prescribed an antibiotic to take daily. Worked a treat and I stopped the AB after a couple of years but still got the odd prescription as particularly long or vigorous sex could trigger a UTI so would take one then. Not really needed them for years now so no longer get them, but was a problem in my 20's.

I was the same-debilitating cystitis which always led to antibiotics no matter what I tried. It got to the point where even the antibiotics weren’t effective and the gp was at a loss.

I have been taking these for three years and haven’t had it since. The normal cranberry extract stuff did nothing but there is something in these that works for me. Might be worth a try: Deal of the day: Bio-Kult Pro-Cyan Advanced Multi-Action Bacterial Formulation Targeting Urinary Tract with Cranberry Extract and Vitamin A – Pack of 45 Capsules amzn.eu/d/5jC6fqO

Fanny ice pack a good idea! Someone else mentioned cold water rinse - I do that! Certainly puts me off round 2 hahaha

Oh also changing knickers when you exercise and washing pants on 60 or ironing them. No pj bottoms in bed also help.