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.

@spicedemerald thanks for rec, just purchased.

hmm seem to be a few of us on low dose or after sex ABs. The wisdom of malone-Lee is that high dose long term ABs kill embedded infection but I do t feel as though it’s worked now I’m no longer on treatment so maybe long term low dose is way to go? Everything scientific on AB resistance is so confusing

@stingyburnyfuck worth a try. In fact-I believe I heard about them on here. Fingers crossed for you.

Your desperate for a solution, try using olive oil as a lubricant, as it's a natural anti- inflammatory.

You're

I've just started these
Last month my period started and so did a UTI
This month, period started and another UTI
Still don't feel 100% and they had good reviews so I got them

I have the same problem as you. No proven UTI but UTI feeling after sex. I looked for a solution for years. Once i saw a private GP and she said maybe i just have a sensitive skin down there. With her revommendation that i started taking antihistamines before sex and they really helped. I get UTI feeling after i go to the pool as well. Now i have antihistamine before i go to the pool and i am just a little bit uncomfortable maybe for 48 hours after but nowhere near as bad as i would be if i didn't take antihistamine.

Sorry to hear you’re suffering so badly. I had a similar issue myself. Sometimes the urine culture would come back with a bacterial infection, sometimes nothing.

I cleared mine up by making sure both DH and I have a wash before sex every time, no exceptions. Whilst not glamorous, it’s a small price to pay vs the agony and inflammation of recurrent UTIs. A bit TMI but I noticed that DH was washing with just a bit of soap on his hands and not really washing his bottom/under carriage properly. I would advise you both get sponges/scrubbers and use these to clean your bottoms properly if you don’t already. This is what has made the biggest difference. I went from the daily antibiotics for months/an antibiotic after sex/monthly courses of antibiotics to now being 2 years clear. It’s important to note that I never really had them with other partners (the odd one) but with DH it was every single time and the new washing regime has been a game changer.

Good luck with everything. I really hope things improve for you!

Also, might be worth looking into interstitial cystitis? This could be what you’re experiencing based on your symptoms and the lack of bacteria in the urine cultures.

Vitabiotics ultra cranberry tablets, 1 a day. Haven't had cystitis for 4 years now.

I used to get it almost always after sex but the following things seem to have helped and I haven't had it for years:

Peeing and having a quick rinse down there after sex.
Drinking more water.
Eating minimal sugar in my diet (For some reason eating a cake or having a sugary drink somtimes triggers cystitis symptoms in me)
Using condoms.

Hi OP this is probably not news to you, as you did say that you don't use scented "products" but thought it might be useful for others on the thread as it doesn't often come up.

I used to get cystitis very regularly and it was torture. I read once online to use non bio, fragrance free washing liquid for clothes, especially underwear, tights, jeans etc. I have done this ever since (12/13 years) and not had cystitis since. I use the Surcare liquid.

Solidarity to anyone suffering, it is horrible and I hugely sympathise

For those of you who have antibiotics 'on standby' at home- how do you get these please? I have frequent UTIs but my GP won't prescribe just in case! Its always 2am on a Saturday morning and I have to wait til 8am Monday!

Google "buy Macrobid online" (or Nitrofurantoin). I've bought from Superdrug and from The Online Pharmacy in the past and they're delivered pretty quickly. Of course, bit quickly enough for when you actually have it, hence always having them in stock!

You have to answer the online questionnaire correctly though so pay attention to that bit.

My friend has a letter from her consultant that she literally carries with her in case she gets symptoms - it asks HCPs to immediately give her ABs instead of faffing around suggesting cranberry.

Thankfully I have a very sensible haematology consultant who had given me 7 days to keep at home
He's also written a letter telling them to stop giving me 3 days of antibiotics and I'm to have 7 days every time

My Gp is a ⭐️ , he understands

Thanks all!

Is your other half hygenic enough?. I suffered terrible with my ex husband and now only 1/2 times a year.

Sex causes it for me too. Nitrofurantoin worked for me when I was prescribed it, though I moved GP and they wouldn't. If antibiotics are working for you they may be the only option. Currently single, so it's not really an issue but OP I'm afraid to say that I had the worst time of it with one particular partner. I've found in other relationships it has been an issue but not to the extent it was with him. So it may be that your partner is a big part of the issue.

Honestly my OP is scrupulously clean, because of my UTIs, but it still happened. More so, on holiday when sex was more frequent.

Have you been tested for any sti's? Specifically ureaplasma? I had similar symptoms to cystitis but actually it was this instead. It's very easy to treat but only specific abs will work on it. Took me years to work it out!

@stingyburnyfuck and anyone else who it might help - I hope these images attach!

Like others I have a letter from a consultant saying that I needed to have them

Strictly speaking, Ureaplasma isn’t really an STI. It’s a bacteria normally found in the urinary tract and the vagina but in low numbers. An overgrowth can cause cystitis and it’s hard to detect because it doesn’t show up on ordinary urine cultures - you need a PCR test on the urine specifically for ureaplasma DNA.

Sometimes ureaplasma colonisation can lead to chronic cystitis.

I wouldn't say that it is childish at all to want to have tasty things in your diet! I would try not to think of it that way. It's completely reasonable and normal to want to have treats sometimes. It's just that when your system is as sensitive as ours, those treats might make you feel even worse.

It’s not on the list but not missing from her original post.