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?

Ok look up interstitial cystitis.

The chances are this is what you have. I have it too. Read the sites about it. Please take their advice and it will help. Do not take cranberry tablets, they can make things worse.

Good luck x

It could be an autoimmune/immune system problem. Mine is/was. Do you also have anything like hypermobility (or just extra bendiness, if you haven't been diagnosed), IBS or other digestive problems, food allergies, other allergies, actual autoimmune diseases (eg Raynaud's, lupus, etc), any sort of prolapse? (If your user name means you are actually a red head, that can also be associated with this kind of thing.)

Before I got mine sorted out, I used to do a wee immediately after sex and wash (which I assume you are doing!) and then drink a sachet of cystitis relief stuff (either Cymalon or own brand). That can help make your urine less bacteria-friendly, which is particularly useful if you have sex last thing at night and will be going some time before your next wee.

Your partner also has to wash before sex. Some women are sensitive to spermicides, so if you are using these (either condoms or with the the diaphragm) you might want to have a re-think.

Wow - thanks so much everyone for the advice.

I am currently washing and weeing before and after sex and using latex free condoms (which used to help but doesn't seem to do anything now).

Like I said, I used to have horrendous episodes of cystitis every 3-4 weeks (mostly around my period or after sex). This seemed to improve during and after pregnancy. Now it seems to be back and I'm broken hearted!

When I saw a consultant in my 20s he asked me if it was sex related but I was embarrassed and said no.

I've managed to get an appt this morning with a brilliant lady Dr and will tell her everything in the hope of getting some help.

Thanks for all the links to books and websites - I will check them all out.

carda - yes I do have IBS - what's the link?

Thanks again everyone - yes it's bloody horrible! Do you think a trip to the sexual health clinic would help?

Cardamom I have the hypermobile form of EDS (including IBS, oral allergy syndrome, mild Raynauds) and I never knew interstitial cystitis was a linked symptom until I just looked it up after your post. No one has ever mentioned it before - thank you, that explains a lot!

ahh I get this. I too pee after sex. I also use femfresh wipes before sex "Let me go freshen up" springs to mind.

Drink lots of water during the day, it dilutes it.

I suffer terribly and almost on a monthly basis but since being pregnant I haven't suffered once. I think it's the lack of sex and lots of water

I used to get this. I had to do several things to eventually beat it.

wash before and after sex
pour cool water over while weeing (keep plastic jug near loo)
Cranberrry tablets- health food shop quality (I use Holland and barrett)
one carton of CJ a day
Use a shower wash that is gentle etc (I use dove)
Drink ALL the time.
No alchol, fizzy drinks, caffine. NONE!
Cotton knickers- no thongs.
No oral sex- to be received.
Eat well and look after yourself.
No swimming.

These are all things that helped me. There are some good books about on the subject. I really hope it improves soon for you.

These tips are all great as my sister has exactly the same problem.

She is 35 and is now scared of having sex as every time she gets painful cystitis, also she sometimes goes into urinary retention as a result and has been told she may have to self-catheterise.

She finds that other causes of the cystitis are: alcohol, and going for long periods without drinking fluids.

After a horrendous time with bladder infection that just would not shift, my gynae referred me to Dr Seneviratne, an immunologist/allergist who has a special interest in this area. He, and my uro-gynae, have said that the links between all these different conditions are not yet properly understood - at the moment all they can say for certain is that these sorts of conditions tend to be clustered together in patients where UTI is very very hard to shift. You might also find that you react to infection differently - always getting ill, always feeling run down.

At least in London, they are starting to form multi-disciplinary teams to begin looking at these issues in a more joined-up way. It's fairly early days, and pretty specialist, and unfortunately it is likely that the bog standard GP won't be aware of this and will continue to treat UTIs with antibiotics with or without probiotics, advice to maintain hygiene (that used to make me want to strangle people!!), etc. Unfortunately the blood tests are, again, very specialised (and numerous - I had 15 vials of blood taken), so it's not the sort of thing that a GP can run tests for and it is WAY more complicated that just looking at white blood count.

In may case I have allergies, IBS, hard to shift bladder infection, EDS III, multiple pelvic organ prolapse, Raynaud's. Dr S diagnosed that I had both an autoimmune problem in that my response to histamine was exaggerated, and a immune system problem in that my antibodies were off. The latter meant that I couldn't fight off infection that well, and the former meant that the bladder lining was getting all eczema-like (and this show up in my urine, which has had flakes of skin in it) which meant that the usual protective layer was not present so bacteria could 'burrow' right into the bladder wall.

In terms of treatment, I've needed a couple of vaccines to get my antibodies up and I'm on antihistamines and other anti-allergy drugs. I'm seeing him for a review this week, so we shall see what else he wants to do. So far, I am very optimistic. I;ve been off antibiotics for 2 months now, with no recurrence (usually it takes 2-3 weeks of being off antibiotics before the infection is raging again), I no longer feel randomly crap for no apparent reason, and whereas I'd normally be ill non-stop throughout the winter, this year I had one cold that lasted 3 days.

Clearly, everyone is different. Not all UTIs are immune-response related. And not all immune problems are like mine.

Oh and feeling faint when you stand up (postural hypotension) is linked too. (I get this - lots of fun!)

Alka selter does the job for me - although I've only had it once or twice, so can't offer any more than that I'm afraid.

In a glass with water, not anywhere else!

Yes, I suffer from postural hypotension too, plus an over-active histamine response (allergic rhinitis, localised itching, if I get the slightest scratch I develop raised weals), unexplained bruising and the classic JHS/EDS form of insomnia: wake up tired, tired all day, get "second wind" between 9-11pm, struggle to sleep. That's to do with increased adrenaline production at night, apparently.

Ah.

Yes, I forgot the whole scratching and bruising thing. Get that too. I didn't realise there was a sleep thing too. I have had this - the 'second wind' bit is very annoying.

Not trying to tout for business on his behalf, but Dr S is great. He's in London and Oxford. Or someone similar?

Definitely sounds like a path worth investigating - thanks cardamom.

(Sorry for slight hijack, OP!)

I used to get this with a partner who was ahem... bigger than average. It caused me misery and was only cured with us splitting up. Average sized dh = no problems. But that doesn't help you but you have my sympathies.

Yes go back to your dr and be honest and ask to see the urogynae maybe?

The interstitial cystitis diet can help relieve symptoms.

I too find the symptoms take about 36 hrs to come on and the anticipation is awful. Mine was definitely better around pregnancy.

Cardamomginger! This is very enlightening! I have IBS, histamine problems, prolapse, circulation/blood pressure problems. My urogynae could not get my symptoms to shift. How can I get a referral to this Dr you mentioned? Can my GP refer me or do I need to get a referral from my urogynae? It might be hard to get them to listen. Do you have any links to info about the whole condition and treatment.

I used to get it all the time.
Cranberry juice has to be ocean spray as that is the only one with a high enough percentage of actual juice in it.
Also, have a bath at least once a week and give everything a good soak. When you wee, sit upright so everything gets out.

I don't have any links. I'll have a scout round tonight and see what I can come up with.

I was referred to him by my urogynae, Vik Khullar, who has been treating me surgically for pelvic organ prolapse and other child birth injuries, as well as for this bladder infection. I don't see why you couldn't on the face of it get a referral from your GP - you just need a referral.

Dr Seneviratne's contact details are here:

www.nuffieldhealth.com/consultants/seneviratne-suranjith

I see him in London privately at the Lindo Wing. On the NHS he is at the Royal Free. I'm not sure where he is in Oxford. If you decide to contact him, his secretary is HARD to get hold of. Eventually she does get back to you - leave both messages and send an email.

As for the diet thing, personally I think this is because with women like us there are various foods that we have milder intolerances and allergies to. Not to the extent that makes us go all puffy, or red, or wheezy, but still enough to get some histamine going. So if you cut them out, there's less histamine in your system, so less of a reaction, so your urinary tract becomes less susceptible because the tissue remains intact.

Has anyone here had a bladder biopsy? Any MAST cells present in the sample? If so, this is a strong indication that there is an autoimmune thing going on.

Forgot to add, the multidisciplinary thing that they've got going on in London about all this involves Vik Khullar, Dr Seneviratne, Christopher Matthias, and Prof Rodney Grahame. I think they have a GI/bowel guy in the mix too, but I don't know who that is. Ditto rheumatology (may be Colin Tench, not sure).

Simplyredhead, sorry I hope we are not hijacking but this thread has some exciting info.

I was just reading about the hyper mobility and it listed bending thumb back to wrist which I easily do- I assumed most people could but is this not the case?

Also OP do you take prophylactic antibiotic? For a long while nitrofurantoin was effective for me. More successful than trying to treat afterward. Do your bouts of cystitis respond to antibiotic treatment.

Yeah - sorry simplyredhead

I know - there are all sorts of things I can do that I had always assumed everyone could do (my mother was hypermobile as well). Or if they couldn't it was because they weren't trying hard enough, or were weird! .

Sorry if this has already been suggested up-thread but - has anyone checked your DH to make sure he doesn't have a latent infection that he's continuously passing to you?

Also, is he washing before sex / making sure not to use soap that might irritate you?

Best of luck and hope it gets better soon.

^ yes my urogynae suggested my probs could be caused by a mycoplasma/urea plasma infection. (This is the road Angela Kilmartin goes down too). It can be passed from one partner to another and can be difficult to treat as requires specific antibiotics. Hard to diagnose as can be very difficult to get it to culture from urine sample.

Sexual health clinic may actually be able to help with that.