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So its not cystisis or thrush - any ideas? My Dr has none

(43 Posts)
reup Sun 25-Aug-13 14:12:35

I had a cystitis which went with anti antibiotics but came back a few days later. I got tested again and there was no infection. I have a burning/pressurised sensation but no longer need to go for a wee all the time. Also there is a slight discharge that is non too fragrant. The pain is everyday but not all the time.

I got a swab taken but am not sure what that she tested for, something beginning with m and a STD. I wanted her to test for strep group b as a non pregnant friend had similar symptoms and eventually her Dr said it was that which lots of women have but doesn't cause any symptoms and gave her a specific antibiotic and it went. I relayed this story to my GP but she wasn't really convinced.

I've tried taking bicarb of soda, drinking tons, cranberry, BV pessaries from Boots, live yoghurt.

I am not at all itchy though on 3rd lot of different antibiotics so it may appear soon!

Its making me feel really depressed as its been about 8 weeks now. Its also making sex not great too.

Any ideas?

reup Fri 30-Aug-13 14:45:49

I found another one at local hospital but on some sessions it's says male/female but only 5 female appointments which is odd. If an imagine turning up and being the 6th. Will see if I can get to a daytime one.

EldritchCleavage Fri 30-Aug-13 12:59:14

Bloody hell, how annoying. I do recommend going to an STD/GUM clinic, whenever you can get there. I found the one I went to much much less inclined to fob off than my GP, who declined to do any tests. Also, their specific experience meant possibilities could be ruled out much faster-they immediately know what it wasn't, if you see what I mean.

reup Fri 30-Aug-13 11:42:44

So saw different locum gp who would not refer me because I didn't have repeated infections. Wanted to do another urine test. She said swab ruled out anything bacterial. Thought it was perimenopausal. Gave me some sort of canestan/steroid combo despite me repeatedly saying I had no external itching or pain.

So I was on verge of tears when I left and can't even cheer myself up with as coffee! 2 days coffee free and have awful headache!

Am looking up std clinics but they are all daytime. Will go back to go next week if the one I have seen more than once is there. Otherwise there is no point.

MoreThanWords Mon 26-Aug-13 23:32:04

Metronidazole is only on prescription. And a definite no alcohol medicine.

reup Mon 26-Aug-13 21:49:29

Yes it was balance active. Will look out for other one.

I had better try one thing at a time otherwise I'll never know what helps!

Thanks again everyone

MoreThanWords Mon 26-Aug-13 21:29:34

Re Bv treatment - it has to be metronidazole. Did you try the balance active pessaries? When I have it, it gives more of a dull ache but generally makes me feel like crap. And the odour ...confused

Hope you get it diagnosed and cleared up soon.

EldritchCleavage Mon 26-Aug-13 21:13:12

I certainly don't suggest the diet should ever be anything other than short term, until symptoms ease.

missbopeep Mon 26-Aug-13 20:29:16

The low oxalate diet is a bit hmm- some people think it helps vulvodynia but others aren't sure. I'd not worry too much about it yet but stick to bland drink and foods.

reup Mon 26-Aug-13 20:15:29

Will give it a go. Had a look at that low oxalate diet and there's very few vegetables that are OK which will be very hard as I'm dieting and eat tons of veg.

hiddenhome Mon 26-Aug-13 18:31:40

Coffee is very bad. I can only drink milky coffee now. I found that my main trigger was actually tea, but I can't tolerate fruit juice, filter coffee or alcohol now. I only drink milk, water, redbush tea and high juice squash, well diluted. I can't tolerate fizzy stuff either.

Try just drinking milk and water for a few days and see how you get on. I was living on antibiotics before I sorted out the types of stuff I was drinking and now I'm fine.

missbopeep Mon 26-Aug-13 18:18:33

STOP the coffee now - it's terrible for sore bladders. Drink just water for 2 weeks and ideally bottled mineral water- or boil tap water first to get rid of the chlorine.

reup Mon 26-Aug-13 18:14:19

Thanks. That's given me lots to look up. I do have quite an acidic diet and drink a lot of coffee and water. Have got type 2 diabetes which is well controlled so I avoid anything sugary and don't drink much alcohol anymore. I probably drink more coffee than most and as much as I love water only drinking that is a bit depressing but better than pain!

hiddenhome Mon 26-Aug-13 17:18:47

What fluids do you drink?

missbopeep Mon 26-Aug-13 16:25:49

If you have Interstitial Cystitis- now called Painful Bladder Syndrome by some people- you need to manage it with diet and what you drink. Someone else has posted some good advice- but basically, cut out all acidic fruit juices, tea, coffee, alcohol, spicy foods, tomatoes and ketchup, acidic fruits ( in fact all fruits for a while.), vinegar and 'sharp' dressings for salads etc.

It's a pain but it might help it from really getting hold and becoming a lot worse.

Many drs know nothing about IC and tbh there is no cure- it's something that has to be managed with drugs that can help but not cure it completely.

I agree you need more specialised advice. Either the GUM clinic or ask at your GP who has a special interest in gynae issues and go and see them. We accidently ended up seeing a GP with a special interest in dermatology with dd2's psoriasis and the contrast with the one I saw with dd1 was incredible.

EldritchCleavage Mon 26-Aug-13 15:47:08

Yes! Found it: low oxalate diet.

Also saw this on the Vulval Pain Society website, which is interesting (and tallies with my experience of reacting to anti-thrush medication):

"What causes it?

It is likely that a number of factors cause vestibulodynia, but often no identifiable cause can be found. Some women have a sudden onset of symptoms following a specific event: a commonly recognised event is a severe attack of thrush followed by anti-thrush treatment. Once the attack of thrush settles following treatment, soreness and burning may persist as vestibulodynia."

EldritchCleavage Mon 26-Aug-13 15:42:04

I did see vulvodynia whilst googlinv and some symptoms match but the area isnt really sensitive to touch

You can have VVS with generalised pain-I did. One thing that helped ws excluding certain things from my diet, as a metabolite from them irritates the skin when passed in the urine (peanuts, spinach and cucumber were included as I recall). Excluding those foods helped enormously and I am pain and infection-free. I wish I could remember the details of it-I'll google and post it if I find it.

NB-my GP had no idea. I was finally helped after a consultant appointment at an STD clinic.

mignonette Mon 26-Aug-13 15:39:16

My sister has this -Interstitial Cystitis and is under the care of a Urologist. Insist upon a referral OP. And no to Cranberry- it is the worse thing you can take if it is IC.

caringmummy2013 Mon 26-Aug-13 15:31:55

Ask if you can be referred to a continence nurse they can scan bladders and kidneys if having persistent problems with cystitis like symptoms and usually good at sign posting to services for other investigations

DrinaDancesInParis Mon 26-Aug-13 11:42:56

Stop drinking cranberry juice! If it is cystitis (or even if it isn't), it will irritate the bladder further as it is both sugary and acidic.

Don't despair if it turns out you do have IC. It is manageable, but you need to arm yourself with info as most GPs are clueless about it. I recommend you give these people a call. They are experts and so so sympathetic and helpful.

Also check out the COBs boards for info and advice.

Good luck flowers

reup Mon 26-Aug-13 09:51:18

Thanks for all those ideas. Am def not itchy and there's no rash. It's internal the pain.

Will go back to drs at end of week and be more assertive or possibly cry. One or other should do the trick. Will look into latex free too. I don't get more pain with condoms though but it's worth a shot.

Thanks for all yr help

MusicalEndorphins Mon 26-Aug-13 08:18:13

Perhaps it is a kidney stone stuck somewhere?
I happened to be reading about this earlier as I was just diagnosed with a kidney stone. Get well soon.

MyFabulousBoys Mon 26-Aug-13 07:50:21

Second the suggestion for using latex free condoms.

MyFabulousBoys Mon 26-Aug-13 07:49:42

Have you thought of going to a dedicated STD clinic? I had terrible repeated thrush about 20 years ago. It was before the anti-fungal pill was widely used. My gp was fucking hopeless and gave me pessary after pessary and told me to use yoghurt and suffer. I went to the local hospital STD clinic and not only did they take me seriously but they gave me the pill and got to the bottom of the problem. Turns out I was allergic anything perfumed. They are the specialists in that area.

You could also insist on a referral to a urologist. You SHOULD NOT be told to put up with it.

You have my sympathy. It is miserable and depressing you are being dismissed. thanks

flow4 Mon 26-Aug-13 07:40:32

Btw, latex-free condoms are much more expensive, but you can get some free from the family planning/std clinic.

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