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.

This works for me

She may be mentioned but OP - can you ask your GP to refer you to Dr Victoria Pritchard? She’s an exceptional expert - in Guildford but worth the travel depending on where you are.

@stingyburnyfuck I've just remembered! Things got much better for me when I was no longer vitamin D deficient so that might be useful? It plays such a huge part in immune function. Iron does too, and many woman can be told their iron is "normal" only to find on closer investigation that their ferritin levels are pretty low.

I do agree with trying the topical oestrogen, it plays a huge role in healthy bacteria in the region. I know in your case this isn't peri meno linked but it could always have been an issue - worth a go anyway as it's a low dose.

The only think that worked for me was a cystocopy and urethra dilation under GA.
i was clear for 15 years (still had to be careful).
recently mine have started up again so I think I need another one

Wet wipes every single time you were

*wee

Garden of Life do a probiotic for bladders and that has made a difference to me. Same circumstances.

I had recurrent UTIs after sex and the thing that properly fixed it was coming off progesterone only pill after my partner had a vasectomy. There is a link between UTIs and hormonal changes during menopause but little discussion (research?) about the hormonal impact of the pill & causing UTIs.

D-Mannose changed my life. I would get it 4-6 times a year, I haven't had it in years since taking D-Mannose. I told my GP about it and she'd never heard of it, it seems like nobody knows about it.

Also, Cranberry doesn't work, I can never understand why people recommend it 🙄

I found the Holland & Barrett D Mannose Effervescent UTI Care tablets help, a bit pricy around £18 but they do have offers on. I also drink Lemon Barley water when I get an attack of cystitis, works better than Cranberry for me.

@Kolakalia Can I ask what strength that one cephalexin is?

@Kolakalia Are you completely sure your husband is putting.....himself in the right place? Not your urethra?!

Ask any doc anyway and they'll tell you it happens due to bacteria on the penis

Of course you can still get a UTI without sex, but cystitis AFTER sex is caused by bacteria on the penis.

Other ways of causing it are using unclean 'toys', underwear not being cleaned properly in the washer, not wiping your front or rear properly, getting into bath water that's not entirely clean etc etc

Also, Cranberry doesn't work, I can never understand why people recommend it

I mean it works brilliantly well if you want to make your already sore bladder feel much worse, I suppose.

@MadameMackenzie that's what I mean
I wash after the toilet, don't have baths, use laundry sanitiser, I'm literally spotless and the GP has told me not to wash as much before because I get BV
Yet constant UTIs

Yes. Like you I had done 6 months of antibiotics on top of many short courses of antibiotics. I then started reacting to the antibiotics. So I and to find an alternative.

Cranberry anything just makes mine worse.

I do D-Mannose and a herbal tincture of: echinacea, uva ursi, nettle, buchu, juniper, lavender, eucalyptus and pine needle. These are immune herbs + antibacterial.

The other thing I do is stop eating sugar and refined carbs as soon as I get symptoms as that seems to feed the bacteria.

This keeps them under control and I haven’t had to take antibiotics for a year.

Totally agree.

I have the same issue, I think its a bacterial biofilm embedded in my bladder wall. Sex seems to dislodge the bacteria and the symptoms start. After my most recent pyelonephritis which resulted in a week in hospital with sepsis I was prescribed long term nitrofurantoin. I now take that before and after sex and it does the trick. D mannose was dangerous for me as it helped my bladder but allowed the infection to travel to my kidneys which nearly killed me.

Could you try a pre/ probiotic? I think someone else has suggested that. Optibac do one for 'for women' which gets good reviews- sure there are others too.

Sounds like interstitial cystitis.

I agree that this could be interstitial cystitis rather than UTI. It is a poorly understood condition and I think I have it.
It causes me pain, urgency, some local bleeding. It's sometimes after sex but mostly triggered by dehydration. When I get a flare up my urine will be clear on dipstick ( I have my own) but will always look cloudy and has bits in it, like white casts. I think I shed my urethral lining or something. Also much worse post ovulation so I think hormones are at play.
If you don't have your own dipsticks I'd suggest buying so you can test yourself.
I had normal cystoscopy.

Cantharis homeopathic remedy

op i'm the exact same and the only thing that mostly works is the preventative antibiotic before sex.

Very timely thread as I've just had the UTI from hell & not had one in 40 years! Sorry if tmi but my wee was cloudy with big blobs like amoebas floating in it. Eeech! Tried the bicarb & water tip and it virtually went clear then returned so I drank loads and loads of water with the odd bicarb chaser & it finally went so avoided a GP appt & antibiotics. I had a really bad bout of diarrhea prior to getting it so think e coli was the culprit. Now washing butt after every single BM. My sympathy to all you ladies.

Does time of day work? Night-time is a complete no no for me, whereas occasional mornings seem not as bad atm - although I realise this relies a bit on the ‘weeing’ - sorry. Also (and this is so sad) finding ways of getting it done quickly, for him, rather than for me, and learning to find pleasure in other ways - although depressingly, being touched recently also brought on several days of permanent need for a non-existent wee.

Nothing destroys me like cystitis. I thought I was a bad sleeper before I started getting cystitis but now I have discovered how absolutely crippling it is to go for days on end with absolutely no sleep at all - what real sleep loss feels like.

Interestingly there is research that covid in some women is linked to greater incidence of cystitis and DH and I blamed this as the culprit for a while as I had covid at the start pre-vaccine in March 2020 and this is when it all really started kicking off for me, having been ok for many years and despite early menopause (45). I’m certainly in remission atm although.

DH really struggles with the idea that it is linked to sex, although I am sure it is. It is all very sad.