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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?

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.

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.

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."

northernlurker Mon 26-Aug-13 15:56:04

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.

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.

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

What fluids do you drink?

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!

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.

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.

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.

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.

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.

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.

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 23:32:04

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

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.

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 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.

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