Recurrent cystitis for the last 11 years - I'm desperate!

[Sal77]

Hi,

I'm going to keep this as short as I can in the hope someone can read it and help me.

I'm 30 and have suffered from recurrent cystitis for the last 11 years (ever since I became sexually active). Sometimes it is so bad I end up at the walk in centre in tears, it is AGONY. At the moment it is more manageable because I've changed my diet drastically and cut out alcohol and sugar almost completely but I get it every time I have sex or if I get dehydrated.

History

12 years ago went on combined pill for acne.
11 years ago became sexually active, got cystitis very first time I had sex.
Was in relationship for 5 years, cystitis was always a problem. I'd get it bad usually at least once a month, often once a fortnight, always triggered by sex.
Saw urologist who said there was nothing he could do for me.
After that relationship I met someone else. I didn't want the cystitis to become a problem again so went to GP and INSISTED she do something (after years of being told 'women are just badly designed'). I was prescribed low dose antibiotics to take after sex (within 2 hours, with food).
The low dose antibiotics do work most of the time but I live in fear of becoming resistant to them. I also find they give me thrush if I'm not really strict about taking pro-biotics, and it is a massive PITA to have to eat after sex in order to take them.
Saw another consultant (was registrar actually), was told to carry on taking the antibiotics and that there was nothing they could do for me.
In my frustration after seeing second consultant I changed my diet, followed Harcombe Diet to get rid of candida overgrowth and sugar addition. Am feeling much better for it, however, I tried coming off the antibiotics whilst changing my diet (I abstained for a while), and whilst the cystitis is less painful than it was, it is still just as frequent.

I have tried
Changing my diet (mostly low GI now) and getting rid of my candida overgrowth problem;
Coming off the combined pill;
Washing before/after sex;
Drinking lots, all the frickin' time;
Cotton underwear;
I always wipe from front to back;
Condoms;
Peeing after sex;
Lemon barley (contains a lot of sugar anyways);
D-Mannose (I take these daily).

I have yet to try
Cranberry tablets (cranberry juice has a lot of sugar in it so I avoid that), though I have some in my kitchen cupboard ready to try;
Cutting out dairy (in case it is some kind of weird dairy intolerance).

Have any of you suffered the same thing? Did you get rid of it? I ask because I am desperate and running out of options. I really am so sick of it and I don't want to keep on the antibiotics forever because I will become resistant to them eventually.

I don't know of anyone else (family or friends) who has this problem. I am SO jealous of other people who have normal sex lives! I'm DESPERATE, can you offer any suggestions?

I should add, I've had two ultrasound scans of bladder/kidneys/womb and all OK, no abnormalities.

What makes me different that means I get it and others don't????

I had the same problem as you . Gynaecologist thought it might be a hormone problem. I decided to try the mirena coil and now have had no re occurrences for 2 years !!!!

I had the same as you.turned out my urethra was collapsing after sex - hence the cystitis - had urethral dilation and that soon sorted it .

Did they check you were emptying your bladder properly?

I was exactly the same but in my case I had a small operation where they stretched the tube carrying the urine as this was too small and wasn't emptying all the urine making the infection more likely to occur. Since then I have been mostly okay but you are missing a trick with the cran tablets as I think they work wonders.

I had this. And I had a similar experience of GPs and registrars. I ended up being referred to a consultant uro-gynae for something else. He has a special interest in persistent cystitis. It turned out I had a deep-seated bladder wall infection. Have you had a cystoscopy and bladder biopsy? baby's suggestion of a kink in the urethra, or other type of plumbing malfunction is also a good one.
I've been on a combination of antibiotics (not trimethoprim!), together with an antibacterial called Hiprex, for about 2 years and am just about infection free. (I also had pelvic organ prolapse issues - hence the gynae- which didn't help in terms of infection, so someone without these might be sorted a lot quicker than I was).

babyiwantabump: Yes, they did, all emptying okay. When I last saw my Registrar she was reluctant to do that as she said if it was bacterial (it seems to respond to antibiotics) then making the urethra wider will only allow bacteria up more readily. Not sure if she's right, though. I guess I'll just have to persevere with the medical profession. I might go private tbh, don't know what else to do!

Slavetothechild: I need to find another form of contraception now I'm off the pill and have had Mirena recommended. I am so nervous about having it fitted though, I've heard horror stories and I haven't had kids so am expecting it to be seriously painful :'(

Thanks for replying! Can I ask how long you had it and when it started (how old were you)?

I had this all through my late teens and twenties, and it's just restarted after a 6 year break for no reason I can see. A cousin bought me Angela Kilmartin's book which suggests that mycobacteria are responsible for these recurrent bouts, and that most antibiotics don't stop this sort of infection. They aren't generally tested for in the urine samples we give to the doctor (and need to be the start if the stream rather than the midstream samples we give). If mine comes back after this lot of antibiotics (third lot in a month) I'll start asking more about it.

I have the mirena and no children - it's uncomfortable having it fitted but not painful.

You have my sympathies, I had eleven years of getting it at least once a month - it's really life limiting. I hope you can get some answers - and please read the Angela Kilmartin book. It's a real eye opener.

Hi,

I have suffered from exactly what you describe for the last 10 years, ever since I became sexually active. I am 28 now and I still get cystitis every single time I have sex. I can honestly say it affects every aspect of my life and makes it very hard to maintain a sexual relationship.

I have been for all the same tests and tried all the same techniques/supplements as you, but nothing works. Most of the doctors I have seen also say that there is nothing more they can do as my bladder and urethra look normal. However the most recent specialist I have seen has suggested I try something called bladder instillation, where they fill your bladder with a solution that helps repair your bladder lining. This is usually only used for people with Interstitial Cystitis, but apparently it has been shown to be effective in people with recurrent bacterial cystitis. It might be worth a try? As well as possibly having an infection deep in my bladder lining, the lining itself has probably become damaged after so many infections and can't fight off new infections...

Also, have you ever visited the Cystitis and Overactive Bladder Foundation (COB) website? Just Google them. You will find so much useful information there on the forum boards and also it really helps you feel like you are not alone with this problem - there are so many other people out there with exactly the same thing.

Sorry for the length of my post, but I just wanted to let you know that you are not alone and that there are still options out there.

Hi OP,

So sorry to hear about your problems, I have suffered for most of my twenties too and it is such a nightmare I completely sympathise with you saying you envy people with a normal sex life, my partner is wonderful and patient but there have been times I haven't been able to face sex for fear and anxiety about getting ill afterwards.

I completely understand your fears about antibiotics, I eventually found Trimethroprim stopped working and was put on broader spectrum ones, until I just decided I couldn't keep using them all the time and now I only take them for really bad blood-in-wee emergencies! (About once a year.)

Touch wood, I have it mostly under control now by doing lots of the same things as you (washing before and after sex, unscented bath products, avoiding acidic foods, avoiding alcohol and caffeine sigh)

You seem to have tried everything but I have a couple more suggestions, just in case...

D Mannose has worked for me, but instead of taking it daily I have a dose an hour before sex and then immediately afterwards. Might be worth trying. The Sweet Cures site (google them or they have a facebook page) has good info about how to use it most effectively.

I also take Acidophilus (you can get it from Holland and Barrett) which apparently keeps the good/bad bacteria balanced in your gut.

Another thing to rule out, and I'm really sorry if this offends you, is Chlamydia, especially if the symptoms seem to never really go away. This wasn't so in my case but several doctors have mentioned it to me and I had a test to rule it out.

You don't mention if your infected wee has been sent off for culturing, to see which bug is causing this? If no bacteria is found at all (really common, and always happens to me) then you might have Interstitial Cystitis, which is more like an allergic reaction than an infection. There is a private doctor in Harley St called Dr Onwude, a gynaecologist, who once spoke to me for a hour on a Sunday (for free) while I cried down the phone. He specialises in Interstitial Cystitis and seemed brilliant- unfortunately I can't afford private but would be in London like a shot for an appointment if I could!

Also second Bertha's suggestion to check out the COB boards. You are not alone, so many women are suffering the same thing. Good luck, I really hope you find some answers x

PS sorry for epic post!!

I found out that what I was drinking was badly affecting me. Tea especially. I can only drink: herbal teas (including redbush), water and milk now. No alcohol or coffee. I can only have a very small amount of instant coffee in hot milk, no filter coffee whatsoever.

I hope you manage to get the problem resolved because it's so miserable and debilitating.

Thank you Screaming. I actually have and have read the Angela Kilmartin book. It was very informative, although I wasn't able to reduce the frequency of my attacks as a result of her advice. It was well worth reading though.

Bertha - the bladder instillation sounds interesting. After so many infections my bladder must surely be wrecked. I have been on the COB boards, I should probably go back and ask for advice. I got a bit scared reading them last time, I get freaked out reading how bad mine could get I think. There are certainly people much worse off than me, especially now I've cut out sugar.

Frustrated - thanks for the advice! It hadn't occurred to me to take D-Mannose in that way, I will give that a go before I go back on the antibiotics full time just in case it does work. I've just bought a recipe book on the alkaline diet, and also one that has sugar-free, diary-free and gluten-free recipes. I am actually taking pro-biotics at the moment along with multivitamins, I forgot to mention.

I'm not offended about the Chlamydia :) I am almost certain I've been tested for that (when I had a smear) and both boyfriends were tested for it too (I've only ever slept with them). Even so if it gets mentioned I'll happily do another test.

My wee used to always come back with E-coli. Nowadays, because I usually start treating myself before I can bring myself to do a wee sample it comes back negative, which frustrates me and my Doctor. I'm certain that's because I've screwed up the results with antibiotics. Certainly Angela Kilmartin seems to think so too.

hiddenhome - I only drink water, which sounds dull, but you get used to it! :)

Thank you all for your sympathy!!

A couple of other things occurred to me:

I was relying on condoms for contraception and was advised to stay away from the ones spermicide - some women have a reaction to this tat predisposes them to infection.

I was also advised to drink a glass of cystitis sachet stuff after sex, especially if this was at night. That way the urine that collects and stays in your bladder overnight should be nicely whatever-it-is-it-needs-to-be to discourage bacteria growth.

Both of these helped, although it didn't solve the problem.

Really feel for you. It's utterly miserable .

Hi Sal,

I had recurrent cystitis every time after sex for about 3yrs in my early 20s. No help from doctors at all - never anything found in urine samples. Thing that helped most was, both preventativly and to limit symptoms, 100% pure cranberry extract from Holland and Barratt. It was like a cordial to dilute with water. I drank it every day. It was expensive - £10 per bottle but so worth it. Cranberry tablets did nothing for me. Find it on the net if h&b don't sell it any more.

Other things that helped, and I haven't had it at all for over 5yrs, were: showering not bathing and not using soap down there, having sex only once or twice a week and NEVER more than once in a sitting (!), washing with water only immediately post sex, not having sex after drinking heavily, and generally looking after myself.

The advice about repairing damaged bladder lining is v interesting and sounds like it could have been my problem. Maybe by preventing an attack with the cranberry extract, I staved off an attack long enough for it to heal.

Good luck

Hi all- same issues and pregnant too.

I’m actually a doctor by trade but still can’t find a cure for myself. The instillation I believe is a for
Of hyaluronic acid that coats the bladder wall to make it less irritated - I have thought of getting it before - my flares are so debilitating!!!

Has anyone been on long term hiprex?

/elmiron?? I’m desperate to find a long term solution- all my concerns are the same as yours - resistances etc :(