To want to have sex without getting cystitis almost *every* time? Please help!

[SimplyRedHead]

So, I've been up since 5, sat on the loo with horrendous cystitis symptoms.

This happens about 36 hours after having sex with my husband, 90% of the time.

I've had just about every test there is: dye injections, scans, long term anti biotics etc. but nothing works. I've been prone to cystitis childhood but now it only seems to flare up after sex.

Please help! I want to have sex with my husband but this is rather putting me off!!

Any tips/advice?

I used to have this problem. All through my 20s I had repeated UTIs that only cleared with antibiotics, despite urine tests coming back clear. I had a special type of X-ray investigation to check it wasn't a problem with my kidneys and they basically wrote it off.

In my early 30s I met my husband and it kicked off big time, just as you describe. UTIs/cystitis every time I had sex, would only clear with antibiotics. I'm a nurse and I researched it myself and went to the GP asking for "post coital nitrofurantoin" - as another poster said, antibiotics where I took one every time I had sex. This helped and I rarely had a bout while on these - maybe 2-3 years. After a while, I saw another GP who commented that my problems hadn't been investigated properly/for a while and would I like to be referred. The urologist did some tests (urinary stress testing which were all clear) and a cystoscopy (camera) to check there was nothing sinister going on. He concluded I had an irritable bladder where the lining was eroded after repeated infections (he didn't call it IC but I think perhaps it is). He explained that very low levels of infection (low enough not to show on the urine tests) would cause me symptoms. He offered to do a series of bladder installations (putting hyaluronic acid) into the bladder via a catheter) to help repair the lining.

I was put on a short waiting list for this but in the meantime, I became pregnant, so it was put on hold. The nurse said, you may not need it afterwards, it seems sometimes pregnancy changes things. And sure enough I had no UTIs at all during pregnancy, or afterwards. 18 months later I've still had no UTIs/cystitis symptoms and I haven't taken nitrofurantoin since before becoming pregnant.

At some point over the last few years, I asked my husband to wash carefully before sex. In fact he does it every night before coming to bed (yes, I know he's a gem!). I don't know exactly when we started it, so whether it was the answer or not, but I think it helps.

I hope you find the answer. I was truly miserable with it before I found the post coital antibiotics solution, which was when it all started to get better for me.

You could also try d-mannose. Its a simple sugar that may help stop bacteria sticking to the wall of the bladder.

Thanks so much everyone - and all derailments are welcome!

My Dr has given me nitrofurantoin - 3 days worth to treat the symptoms now and then 12 spare to use one after sex to prevent infection might take a few years to use them up.

I tried to talk to her about IBS and the link but she was so busy and running so late she didn't have time to talk properly. She's asked me to go back at another time to talk in more detail.

Thanks to the PP who suggested getting my husband checked - ill ask him to do that. I was hoping that using condoms would stop any germs but I guess the germs could come from his hands / mouth etc.

I'm going to continue with the research and keep pursuing the Dr for help. I'm especially interested in the link between allergies and repeat infections and also with having an 'irritable bladder'. There are lots of times when I feel like my bladder is itching or raw and my urethra hurts but I don't have cystitis.

Thanks again for all your suggestions.

I used to get it a lot too. My dr told me to try eating honey. You don't have to have the potent manuka stuff, just regular honey. He said 1 tablespoon a day would help.

Mine weren't intercourse related though, it was mainly if I'd been ill with a cold or something I seemed prone to cystitis afterwards.

I feel your pain totally you poor thing .

As someone previously said, triple strength cranberry tablets sorted me out; they also seem to be on promotion at Holland and Barret quite often so you can stock up. I also found that drinking probiotic yogurt for a couple of weeks helped too for some reason. Good luck! Xx

Another vote for cranberry capsules daily

It's interesting what you said about how your bladder and urethra feel. the bladder infection feels completely different to the usual cystitis type feelings. There is not much urgency - at least any urgency is related to stress incontinence, not just the feeling of needing to wee all the time. And there is never any pain when I go. Instead I get pain and irritation in my bladder and, in particular, my urethra feels very irritated and sore. When I have the infection and need to go for a wee, I feel it in my urethra, which, apparently, you are not supposed to!

I had cystitis for years and years as a teenager/young person/twenties. I had scans, and dye but nothing was found. Then I went to the GU clinic who found deep infection in bladder, and they cured it. Have never had cystitis since.

I would suggest you go.

I had cystitis all the time in late teens/early 20s - somebody (cant remember who) recommended i change my pill (was on cilest)- ive never had a UTI since. Just a thought.

I had this and after constant bouts of cystitis I took one amoxicillin after sex for about a year. Then I realised I was forgetting occasionally and for some reason it fixed itself. Been fine the last five years, with same partner.

Flying can trigger it as well - anyone find that?

I've had it once or twice and really feel your pain.

Without fail I have a wee as closely to having sex and as soon afterwards as possible. I read that doing those thing prevented cystitis once, have clung to it religiously since.

What a great thread, I'm considering the dialation surgery but one thing that has worked (after a 2 year course of antibiotics) was taking D-Mannose capsules. According to my consultant it's much more effective than any other "non" drug. It has really helped.

Another thing I was told was to lean back after peeing as it apparently clears more urine out of your uretha by stretching it slightly.

I find it's worse without a condom than with. I get cystitis every time too. To the extent I stopped wanting to have sex. My doctor gave me anti biotics (cefalaxin) to take one straight after sex. Knocks whatever it is on the head and don't even get it once a year now. I think I'm on a different one now amoxycillin but works 95% of the time. Good luck. It sucks.

Stargazey how did they find the infection exactly? What did they give you to clear it?

I might try the d mannose. My consultant put me on a drug for years (elmiron) to help repair the bladder lining but I think it costs the NHS a bit and takes a while to have effect. I had to stop taking it when TTC.

There is nothing quite as bad as recurrent cystitis when TTC.

It's a shame so many of us have suffered so long with this. It can really affect your love life (and hard to go to work when constantly need to pee).

I have suffered for years too and mine is directly linked to having chronic bacterial vaginosis. As soon as this flares (ie my ph level changes) I get horrific symptoms. I have a cocktail of vaginql and oral antibiotics as well as tablets for over active bladder. I have tried everything known to man! In my case, not letting water close to the area, never using any soap etc, taking oral probiotics and going to the loo straight after are some of the things I do regularly.

Another vote for post-coital antibiotics (I have trimethoprim, works well for me) and D-mannose. The latter has been proven in the science literature to stop bacteria sticking to urothelium, and I couldn't find proof of the same effect for cranberry, so I've stuck to D-mannose and found it very helpful. I order it on Amazon. Weeing after sex also useful.

I really feel your pain, the whole thing has put me off sex. I don't have the kind of job where I can take time off unless I'm actually dead, so I live in fear of another UTI.

Thanks all - it's so good to talk about it. I'm a bit embarrassed in real life!

I'm going to make a GUM clinic appt too to see wha they say. I've take 3 ab now and am still in agony but it's getting slightly better.

UTIs really are horrendous. to everyone

Hey people. I suffered from IC after intercourse. It was so painful!!! doctor told me to pee before and after intercourse, that didn't work. Anyway, the NHS website recommended cranberry tablets. For me MAXIMUM strength cranberry tablets are a miracle worker!!! These are the ones i've been using
cranberry 12000mg + Vitamin C 80mg, so i recommend you get the same ones. They will take a while to kick in, I hope they help you like they helped me!!:-) x

I used to suffer too.
Stopped occurring after I stopped using condoms.
I would also recommend bearberry capsules as well as cranberry.
Also my doctor recommend ensuring that my bladder was completely empty each time I went to the toilet, this could mean changing position at the end of your wee to eek out every last drop.
And always, always have a wee after sex.

Op I used to have this when I was in my early twenties, after reading up on it and being so fed up I did the following for a few years, I now have about one a year.

Find a shower gel that works for you, I use dove.
Shower before and after sex, (no oral sorry!)
Poor cool water over your bits when weeing
Drink water, shit loads of it
Give up alcohol completely
Cotton underwear, no thongs
Sleep well
Eat well
Cut out soft fizzy drinks, high sugar ones etc
No orange juice
A carton of cranberry juice everyday, not the reduced sugar one either
Air dry bits after shower
no baths
No swimming

After a few years reintroduced things, the only thing I still do is cotton knickers no thongs unless night out and dress requires it. Oh and fizzy drinks are back but that's was about 5 years later.

If you go on holiday get your gp to give you a prescription, get it and take it with you if only for peace of mind, the added stress is also something I found made things worse for me.

hth

oh I forgot holland and barrett triple strength cranberry tabs, are a life saver.