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Pleeby

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Posts: 5
Reply with quote  #1 
Hi all,
I’m new here. I’m 31 and I’ve been with my partner for almost 3 years. I suffer from recurrent UTIs and have been taking Nitrofurantoin for two and a half years - which does work but as you can imagine, the side effects are undesirable, constant thrush and it doesn’t help with my IBS.
It’s gotten to the point where I’m reluctant to have sex because of the side effects.
I had a bladder ultrasound and CT scan recently which came back clear, however I do have some congenital malformations with my kidneys. I saw a kidney specialist who said the kidney issues aren’t likely to be causing the UTIs so I’m now on a waiting list to see a urologist to have a camera inserted into the bladder.
In the mean time I’m wondering if anyone has any other advice, other than peeing before and after sex etc that the GP rhymes off every visit. I’m taking cranberry tablets and a fermented turmeric drink to try and promote good bacteria in the stomach.

Appreciate any advice!!

Kirsty
ModeratorKate

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Posts: 1,783
Reply with quote  #2 
Hello Kirsty
Welcome to our Forum am sure you will find much to assist you, so do please keep posting.

We are a UK based Charity and you are more than welcome to Join BHUK as  member you will receive so much more advice and information.

There are many reasons why different things affect us, as we are all different it does making a diaganosis sooooooo difficult, as what suits one person can be a nightmare for others, but do read through the different Categories,.

Here are a few things that may be worth considering.
First is a reply by Moderator Susan much earlier to a poster. and second a link within forum

Now for  the IBS.  You say that your bladder flared again after being diagnosed with IBS.  Try to track back and see if your bladder problems were linked to times when you had IBS or tummy problems.  IBS is an inflammatory condition of the gut often caused by an overgrowth over bad bacteria in the gut caused either by stress, diet, repeated infections treated by antibiotics or a weakened immune system.  If you don't want to continue on courses of antibiotics then you may need to look at your gut health as the bacteria can often leak through the lining of the stomach causing issues throughout the body and setting up infections.  Is there a local health food shop near you who could put you in touch with a nutritionist as I suspect you may need to work on improving your gut health through diet and some supplements above all good probiotics to try to ease and remove your IBS symptoms and improve your immune system in general.  Try looking at blogs such as Deliciously Ella who suffered in her early 20s from repeated bladder infections as well as other illnesses and through her own research has massively improved her health.  You may need stool testing as well to check for parasites, heliocobater bacteria in the gut and food sensitivities such as gluten.  Also I'm uncertain as to whether your IBS manifests itself in constipation or diarrhoea but if the latter then cleanliness down below is vital as bacteria from the anus can easily work their way to the vagina and urethra setting up a round of infections.  Angela Kilmartin's bottle washing technique in her book will help with keep things clean after bowel movements, sex etc.

http://cobf.websitetoolbox.com/post/diagnosis-help-main-cause-sex-but-not-with-every-partner-8456413?pid=1295315944&highlight=sex

http://cobf.websitetoolbox.com/post/thrush-treatments-8091130?trail=15#1


Also I wonder if you have contacted the following as they are nearer to you.( Taken from our website that also has loads of info)

ICSG Australia
PO Box 144
Richmond VIC 3121
AUSTRALIA
Dr Katya Buc Stooke – Chairman

Interstitial Cystitis Support Group (This group may be inactive)
Mercy Hospital for Women
Clarendon Street East Melbourne,
3002 Victoria
Australia
Contact: Christine Murray

Kind regards
Kate




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Moderatorsusan

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Posts: 1,048
Reply with quote  #3 

Really sorry to read you are continuously getting UTIs which are worsening your IBS.  Just some pointers to try to help

1.  Has your urine ever been 
analysed and any bacteria found in it, has the GP given you your results?  I'm assuming you have been given 3-5 day courses of antibiotics each time which may have cleared away some of the infection but left you with symptoms.  I suspect you have a low grade fastidious infection that has simply never cleared because the antibiotics prescribed are either resistant to your bacteria or not a high enough dose. 

 2.  To help yourself in the meantime, get some D Mannose powder (google it) and take 8 teaspoons a day in water when flaring or a management dose of 3-4 teaspoons.  It clings to bacteria such as E. coli and flushes it from the bladder.  Try not to pee after drinking it for an hour and take a glass each time you pee.  Also try Oil of Oregano oil tablets and Grapefruit seed extract.  Two OOO tablets twice daily and the same for the GSE.  Take away from antibiotics. 

3.  Despite what you have read, Do NOT drink cranberry juice.  It is full of sugar which will feed bacteria and is way too acidic.  Drink lots of water, especially as you are constipated, you need to get the bowel and bladder working and flushed to keep your urine from pooling and bugs causing infections. 

4.  Look at your diet and lifestyle.  As you have IBS an inflamed gut can often cause lots of bladder issues as it puts pressure on the bladder and can cause leaky gut where toxins leak from the gut into the body overall and cause infections and inflammation elsewhere.   Cut out wheat, caffeine, sugar, spicy food and tomatoes and citrus foods for the time being to see if this helps.  Drink plain ph neutral water, nothing carbonated as carbonic acid is a bladder irritant.  It sounds dull but you need to calm the inflammation in your gut and bladder. Ideally speak to your local health food shop and get some advice there. 

5. For the time being and to help your immune system I would take a good probiotic such as VSL 3, 
Culturelle or Symprove to restore the 
gut bacteria you need and work on your immune system through diet, lots of soups, stews and nourishing foods.  

6. Don't forget to look at all aspects of your health as to why you are getting these recurrent infections.  Are they sex related - what is your method of birth control.  The progesterone only coil and low oestrogen types of pill can cause issues because the bladder and vagina need oestrogen to maintain a healthy ph to prevent bacterial overgrowth.  Think back to when these started - could a change in BC have triggered them? Diaphragms and caps are also known to cause UTI issues  Is he too big - that can irritate the bladder and also think about vaginal lubrication such as Yes or Sylk - may help if dryness is an issue.  Both are entirely natural so non irritating.

7. Shower don't bath and no foam bath products in the bath or anything perfumed down below including perfumed toilet paper. Don't douche your vagina as this affects the natural 
ph balance.  Cotton Sanitary towels only as the bleached lining of normal sanitary towels and pads causes urethral irritation and no tampons.  Bugs live on tampon strings and can work down from your anus to your urethra. Always wipe front to back when on the loo (this is one thing we probably all know but hey its worth repeating).  And practice the bottle washing technique each time you have a bowel movement.  A good book to get hold of is the Angela Kilmartin book about cystitis. Lots of lifestyle tips for managing this and her famous bottle washing technique.
 

8.  In Oz you can buy Hiprex over the counter - this is a bladder antibacterial.  Its not an antibiotic but it essentially prevents bacteria from clinging to the bladder wall and thus forming new pods of infection.  Works best in an acidic environment so take away from things such as Ural which are urine alkalizers.  You can take one tablet a day or half a table to start with and work up to one tablet.  A number of urologists are now using this medication to help people with recurrent infections.

9.  Finally there is an excellent group in Oz - chronicutiAustralia who have a superb website and support forum.  Lots of info on there to help you.

Please don't feel isolated with this - hopefully some of the above will help along with the Oz support group.

 

 

Pleeby

Registered:
Posts: 5
Reply with quote  #4 
Thank you so much for your quick reply ladies. I really appreciate it.
I have recently changed to a doctor with a particular interest in women’s health, and what a difference it has made. I feel likelly listening to me!
She did a full work up, urine, bloods, vagina swabs, ultrasound of the bladder and CT scan of the kidneys.
She also recommended Hiprex and cranberry extract tablets which I have been taking twice daily - that got me through 7 weeks
without any antibiotics and no infections (which is the longest I’ve gone by far in the last 3 years!!) but then I got two in the last two weeks which I treated with Nitrofurantoin.
I have seen a gastroenterologist about my IBS and have been following the Low FODMAP diet for the past year which has made a huge impact! I am no longer constipated. I drink 3 litres of tap water a day and I usually have one coffee in the morning and one cup of tea in the evening. I have tried taking Kefir to increase the good bacteria in my gut, as recommended by my doctor, but it caused me to be very constipated and flared up my IBS.
I currently have the non hormonal IUD as my form of contraception. My partner is big, which I think is why I suffer a lot with him where I only occasionally had this issue with past partners. However, I’m not planning on giving him up! I do use silicon based lubricant and I am definitely more prone to infection without the lubricant.

I really appreciate all of your input and I will take all of your advice on board. I will also check out the Australian forum you suggested.

Thanks again!
Kirsty
doloroso

Verified BHUK Member
Registered:
Posts: 89
Reply with quote  #5 
Hi Pleeby!
I am so so very sorry to read of your plight!!! You have come to the right place for info! The moderators are fantastic and are encyclopedias.
I am in my late 60s and have experienced awful recurrent UTIs over the years. My last woeful tale lasted 4 yrs. I must say I have been off a long term course of antibiotics since end October 2017!! (4yrs of Abs)! NOT THE ONE YOU HAVE BEEN TAKING. Did not work for me.
I had a WONDERFUL urologist who happened to be my late Dad's Urologist so I was EUPHORIC when I was referred to him. E.Coli is my problem. That's me done and dusted.

I have invested in a portable bidet which fits onto the loo. (In Italy they are the norm).  I use a ph kind lady wash. I also use Yes lub although we are not really sexually active any more!!! Don't want to give you too much info! During my 4 years of ABs I have been taking daily a probiotic. I still continue to do so.

IBS. Now this is an old fashioned remedy. Bay leaves! Boil a couple of bay leaves which you have washed and split slightly in a little pan. Let the water cool down. Drink this fluid. No sugar. No honey. No artificial sweeteners. This you can do daily even along with your normal meds. This bay leaf water will also help with any constipation, any indigestion and calms stomachs. I used it when our sons were babies. Living Italy, my late darling Mum in Law would boil this for me when  the babies had colic and hey presto, the babies would find some relief from their colic. We still use this method for ourselves if we have a tummy problem. Our most recent arrival our little grandson had colic/constipation probs so I told my daughter in law to do the above and by the evening baby had done a lovely poo!!!  I do wish you well my love. It WILL get better - especially now that you seem to have found a better professional to deal with your ongoing problem.

Keep posting and good luck.

Hugs
xxxxx




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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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