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GeorgiaH

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Posts: 14
Reply with quote  #1 
Happy new year all.

Just curious to those who have had a bladder dilation or stretches...

After having mine done I found relief in symptoms for 3 months, after that I tried my triggers again such caffeine and intercourse on a very very small scale and found my symptoms came rushing back.

As my GP and urologist still have no idea what is wrong after 7 years, with no conclusive results from any scans or urine samples, I am due an appointment next month after trailing another anti biotic for 6 months that has done absolutely nothing.

I can't see a 'cure' for this and I'm so sick of life with this debilitating issue that I am all for having another dilation, but i know this has its risks.

Does anyone else have regular stretches/dilations In order to keep their symptoms at bay? Is this a thing ??

I'm having a flare up again after having a couple of SIPS of tea ( tried to be polite at afternoon tea over the holidays with the in laws so literally only had a couple of sips !!) and some chocolates and I can't believe how much discomfort I have been over the past week. Taking mannose D, uva ursi and my antibiotics to stop irritation but bladder is so painful, belly swollen, frequently urination with hideous burn and very tight back.

Symptoms are beyond sensitive again and I can't take it anymore. It isn't just taking its toll on me but I feel that my very understanding fiancé , where sex has been non existent for the past 9 months as I always end up in a&e with a bad bladder/kidney infections is at his max also as I am a grumpy sod all of the time!

Last time I saw my urologist I asked what the exact bacteria was that I had and demanded a thorough urine test, that didn't go down well and his words were ' well you know more than me' as I brought in a book that I was reading at the time on uti's .

I really really do not want to be fobbed off again with more antibiotics as I have been on them pretty much constantly for 7 years.

Can anyone suggest anything I could maybe try next? I've looked into paying for a private urology appointment but as it is very expensive I would like to know if I would get a better outcome from anyone's experiences with going private? I'm only 23, and I feel that I can no longer go on with this ruining my life. Many thanks


I cannot see the light at the end of the tunnel and this horrible problem has cost me relationships, a job, ruined holidays and the past year has left me utterly miserable sorry for the major rant, cannot sleep as I'm in so much discomfort and you guys have always been fabulous x
Blueangel

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Posts: 84
Reply with quote  #2 
Hi GeorgiaH
I'm looking for answers myself so can't offer much information plus
I haven't had any bladder stretches but your symptoms seem like IC to me.

The burning pain after eating or drinking a trigger food or drink is a typical symptom.
I was recently diagnosed with IC after 10 years of suffering by having a challenge test.
It shows how much your bladder can hold with and without pain.

I hope you find some answers. I'm still searching for something to ease my pain.

Good luck.
ModeratorKate

Moderator
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Posts: 1,590
Reply with quote  #3 
Morning all
Here are a few tips that may offer some respite, from previous forum threads.

The COB Foundation(Now Bladder Health UK) can provide PBS/IC patients with a wealth of information, for example:
Members Magazine “Your Bladder Health,” published 3 times per year.
⦁ PBS/IC Handbook – an excellent booklet written to provide practical help and advice.
⦁ Telephone Advice Line – 0121 702 0820
Comprehensive Resources - fact sheets, DVDs, lending library, Can’t Wait Cards .
⦁ ......
 Moderator Susans Comments
⦁ take lots of deep breaths and drink lots of water A teaspoon of baking soda or bicarbonate of soda in a glass of water a couple of times a day can relieve pain by reducing the acidity of your urine. Its also cheaper than the OTC sachets. If you are on a low sodium diet then you may use the alternate that works for you. Azo Standard can help (this can be purchased online via Amazon if you are not in the USA). Its a bladder analgesic which is used in the US and available OTC there. Warning it turns your pee bright orange but will numb your bladder. An ice pack will numb and distract the nerves causing your pain and provide relief Please avoid heat pads between the legs as these provide bacteria with a perfect place to breed and will also encourage thrush. Take pain relief Go to bed or lie down if possible, pop a cushion or pillow under your knees to take the pressure off your pelvic area Wear unrestrictive clothing to avoid pressure on your lower abdomen or pelvic area. Eat a very bland IC style diet until the flare settles
⦁ Drink plenty of water to keep the bladder flushed
⦁ D Mannose powder taken up to 8 times a day can help with e coli or gram negative bacteria. Take a teaspoon in water and try not to urinate for an hour afterwards. Otherwise take it after you have been to the loo.
Avoid the following:
⦁ Baths (a dirty bath will harbour bugs)
⦁ Swimming pools (the chlorine can irritate your urethra and bladder and will again breed bugs)
⦁ Hot tubs/jacuzzis (they are a breeding ground for bugs)
⦁ Scented toilet paper
⦁ Douching (will upset the natural balance of your vaginal secretions and can lead to Bacterial Vaginosis)
⦁ G-strings
⦁ Tampons - use towels and ideally cotton ones rather than synthetic
⦁ Tight jeans
⦁ Scented washing powder/fabric softener
⦁ Coffee
⦁ Tea
⦁ Cranberry Juice/Fruit juices (extremely acidic and full of sugar which will feed your bugs)
⦁ Fizzy drinks (carbonic acid, a bladder irritant)
⦁ Chocolate
⦁ alcohol!
All these things can cause further irritation to your already inflamed bladder and some provide a great breeding ground for bacteria and a way for new bacteria to enter your bladder. Additionally, always wipe ‘front to back’ and use the Angela Kilmartin bottle washing technique each time you pass a bowel movement or have sex. (http://www.angelakilmartin.com/cystitis/http://www.angelakilmartin.com/cystitis/)
Hopefully some of this will help and you will feel better soon.
.......
Moderator Jens comments
You might want to look at researching a condition called vulvadynia. There is a 10% chance that women who have IC also have this condition.
I'm one of those unfortunate 10% suffers but I have seen a specialist who has been very helpful and I now have the following medication to reduce my symptoms
5% lidocaine (applied 10 minutes for sexual intercouse and every night)
A barrier spray that is applied each time I go to the toilet
A cream that I use when my symptoms (itchiness, dryness, vaginal pain) start to show any sign of increase.
I also take 5 to 10mg of diazepam at night and this helps with spasms and throbbing pain (it always seems to be worse the moment I go to bed!)
 
⦁ I tried a hormone cream but found the replense much more effective. I don't use it all the time just when the dryness becomes noticeable or bothersome.
...............
I hope some of this may help
Kate

 

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Moderatorsusan

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Posts: 880
Reply with quote  #4 
Thank you for sharing your story and you are right, there must be answers out there for you.

You write about having this for 10 years and you are now 23 so it sounds like it started around puberty. Have hormones ever been checked? For some ladies, very low oestrogen levels create the bladder problems they suffer from. Oestrogen is vital to the urinary and vaginal tracts as it keeps everything plumped and healthy and has natural antibacterial properties. You write about a fiance. What method of BC are you on. If its an progesterone only pill or the mirena coil, these all wipe out your oestrogen levels leading to infections, the relaxation of the smooth muscle wall of your bladder leading to those need to pee signals going nuts and a thinning of the bladder and urethral linings allowing bacteria to flourish and inflammation to take over. I'd honestly look at stopping whatever form of BC you are on and see if things improve after that.

You also talk about immediate reactions to trigger foods and drinks such as tea even after a couple of sips. Has your urologist ever prescribed anything like an antihistamine such as atarax, femotadine or fenofexadine for you? With the stress of your bladder you are producing loads of adrenaline which in turn create mast cells in the body. These mast cells are particularly fond of your bladder where the nerve endings are highest and can spark off bladder flares and pain. The mast cells create inflammatory conditions throughout the body and need to be calmed. The antihistamines help to do this and need to be taken daily as well as following a low histamine diet which will dampen down the inflammation in the body. Worth having a look at the link below for more information and also google the Low Histamine Chef for diet and menu ideas. Additionally mast cells are an all you can eat buffet from any bacteria in the bladder so by cutting off the food source any infection can be controlled.

https://lookaside.fbsbx.com/file/Histamine%20intolerance%20and%20its%20role%20in%20chronic%20bladder%20inflammation.pdf?token=AWyfrR7hTBZsO-gffkmZj0ZqWizC9reb7eaZ_gjVirRueKgtD7brgQPLJiVK7BFuAsbJ1559O4X1cxn0X1Qj48yE9TCh2sGWTRn5aW175WwLfkGWIqumcvP47v0JHxJpZntksSD1bHm9Pity_zk8VEvvurqHq0SritQb9LmCnT5V5A

I'd take this to your urologist and see what he feels but its certainly worth looking at and you could try the low histamine diet to see if it brings any relief along with the antihistamines.

Going privately to see a specialist is not necessarily the answer. You ideally need to find a specialist who is prepared to think outside of the box rather than ticking off an IC checklist which is usually urine sample for infection, ultrasound, uro dynamics in case of overactive bladder and finally a cystoscopy under which your bladder or urethra may be stretched and a biopsy taken off the bladder wall. After that you may be given a diagnosis of IC or PBS and medication to control symptoms.

You may be better off spending your money firstly on a private urine test to rule out definitively whether there is an infection. The COB office can give you details of one which is available for around £70 where the urine is cultured for longer. Going privately to see a urologist will mean I'm afraid that they use exactly the same test as the NHS so an 18 hour culture and thats it. The private test at least will mean its cultured for around 48 hours to allow further growth of anything found as well as White Blood Cells etc.

GIve the COB office a call and they can provide you with a bacterial infection pack which has details of 3 specialists treating people with infection who have been through the whole gamut of standard IC tests and yet have been found to have a chronic untreated infection. They can also give you the details of the private urine test and also the names of specialists for hormone issues should you wish to pursue this.
Erin

Registered:
Posts: 8
Reply with quote  #5 
Hi Georgia,

Happy new year. I just wanted to assure you you're not alone. My painful bladder symptoms began when I was 16 too and I'm 27 now, still trudging along.

I've recently been diagnosed as having an overactive bladder and a voiding dysfunction so my urologist has advised I try Botox injections to try and calm down the painful bladder spasms which seems to be the source of my pain/irritation. I'll let the group know if these prove effective or not.

I had a bladder stretch when I was 18 and it did nothing for me and my pain came back just as bad as ever. I was told it could be done again but there was no guarantee and nothing else they could do for me. It was devestating to be told this especially aged 18 when I was trying to deal with uni etc.

Flash forward to 2016, I was told by an NHS urology nurse that a lot of the medical profession now deem bladder stretches as outdated and as having little result among patients. While I cannot vouch for that as medical advice it certainly rings true with me personally and other people I have known who have had it done (sometimes several times). 

Have you had urodynamics testing at all? This is what I underwent and subsequently got a diagnosis for the first time in 10 years. Maybe you could ask your urologist about it? I tested negative for infections too so doctors were at a loss until I met my most recent consultant.

I have cut out caffeine (tea, coffee, fizzy juice), alcohol and yes intercourse is a trigger for me too, total nightmare isn't it! 

I understand what you mean when you say you're sick of life - I am too, it's so debilitating and exhausting just trying to cope with the pain and everyday life. I too lost my job because of it, it's tiring mentally. I've been seeing a psychologist for the past few months to try and help me deal with the emotional/mental strain of a condition like this and I feel like it is helping a little.

I put up with 10 years' worth of consultants, gynaecological and urological, telling me there was nothing wrong with me until I pushed to see my current specialist. If your consultant has that kind of attitude you could always ask for a second opinion or to be referred to someone else. It might be worth researching who has particular expertise in these types of conditions because I found that the run of the mill urologist didn't have a clue and had a less than sympathetic attitude!

It is so unfair that these symptoms affect any of us to the extent that they are ruining our life but I can really sympathise with you being so young at only 23 to be dealing with all of this is a lot I know.

I can't guarantee urodynamics testing will give you your diagnosis but unless you push the medical profession you might not get to the point where you do get your diagnosis and an effective treatment. I genuinely hope you get some relief from your symptoms and that life becomes more bearable for you. I always say to my family that I wouldn't inflict what we have to go through on my worst enemy!

If you ever want someone to talk to, I'm here as is everyone else I'm sure. Before I saw this forum, I felt completely alone and now I know there are so many of us going through something similar, I realise it's far more common than society would have us believe. It makes me want to fight to find a treatment that works and to keep going.

Best wishes,
Erin
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