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LouMartin

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Posts: 6
Reply with quote  #1 
Can anyone help? I am in desperate pain. Have been 80% of time over last 6 weeks. Have not been diagnosed with IC/PBS but feel I have it. What is the best quick way to pain reduction. How can I get my diet alkalised quickly?
ModeratorKate

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Reply with quote  #2 
Hello LouMartin
Welcome to our Forum, you will find much to support you, by reading through other Members Posts similar to yours and they have often many suggestion and help.
Also have a read through this contact which will nearer to you which appears to have many links.

ISOP – website only
Lennart Branthle
http:/home.swipnet.se/isop/ic.htm

We areall different and react differently, here are a few suggestions,
Many find Diet plays an improtant role in assisting our Bladders.

The standard nerve pain medications prescribed for the neuropathic pain of IC include Amitryptaline, Nortryptaline, Cymbalta or Fluoxetine. The advantages of these meds is that they can be prescribed at low dose rather than high dose and you can then work with your GP or Specialist tweaking the dose. More info below and yes they do work at reducing the effects of nerve pain for IC. Like most medications there can be side effects and obviously you must check with your specialist or GP if you are taking medications for other conditions in case of contra indications. These medications are usually taken at night as they do have a sedating effect. People do find they feel groggy in the morning so it's best to take them an hour or so before bed so you don't feel so groggy in the morning. The medications can take up to six weeks before any benefits are felt.
A pelvic pain clinic can also help with pain medication using opiod or morphine based medication.

To Alkalise see this from our website
http://bladderhealthuk.org/bladder-conditions/cystitis/bc-treatments/self-help

Here is extract from our website
http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-diet

Also Chrysalis gives good advice
http://cobf.websitetoolbox.com/post/life-is-good-again-after-having-ic-9324528?pid=1300317827&highlight=alkaline+diet


















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LouMartin

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Reply with quote  #3 
Thank you Kate

I am on mirabegron for urination frequency with no effect at all.  I would be okay with just frequency but that is not it, its the pain. 

I am on an SSRI anti depressant called Brintellix but might ask to change or add one of these to the list.  Fluoxetine did not work for me as the side effects were awful.

I know your slogan is "living positively with bladder illness" and I am sorry to be negative.  I don't think that the urologist I am going to see tomorrow for a cystoscopy understands how to diagnose PBS or if he does I am a long way from a diagnosis since there are so many hoops to go through as I understand it is difficult to diagnose.  Is this what you understand also? I am really scared because I already have enough pain and that will just add to it.  

I am at the end of my tether.  I hope things somehow get better. 

Louise Martin 

ModeratorKate

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Reply with quote  #4 
Hello Lousie
Bless you, unfortunately diagnosis is difficult, as we are all so different.

You could also e. mail/Tel. BHUK and become a Member, they will have much more advice to offer you.We have many overseas Members.

Here again is a reply from Moderator Susan to another Member but may help BEFORE you see urologist.

Apologies for the delay in responding to you and I hope the cystoscopy goes well.  If you pick this up before the procedure insist that you are covered with antibiotics post procedure for at least a week to cover the risk of infection from surgical instruments.  Also drink plenty of plain water post surgery and take bicarb to prevent any post procedure stinging.  To help over the next few days if your bladder does flare, do the following:

1. Every 20 minutes drink half a pint of water and repeat for this the next 3 hours

2.  Add a teaspoon of bicarbonate of soda or baking soda to a glass of water and drink that every hour or so to alkaline the urine.  The stinging you may experience is because your acid urine is inflaming the tissues of your infected bladder.  You need to take the sting out

3.  Icepack between the legs to numb the nerve endings.  Put some ice in a plastic bag and wrap it in a tea towel.  Put a hot water bottle on your tummy or on your back.

4. Take pain killers every 4 hours.

5.  Put your feet up or go to bed.  Do not attempt to go out.

6.  A really bland diet for the next few days.  No tea, coffee, alcohol, fizzy drinks, spicy foods, fruit juices, tomatoes or citrus foods.  All are acid and tea and coffee contain caffeine which is a bladder stimulant.  Just lots and lots of plain water.

7.  No sex, I know that sounds daft as you probably don't feel like it but leave alone for a couple of weeks to let your bladder inflammation settle and avoid the risk of reinfection.

8.  Shower don't bath and don't used any scented products down below.  Also cotton knickers only, no g strings.

9.  Wipe front to back always and don't wait to pee.  Go every 1.5 to 2 hours.

Some further points to help longer term:

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.  Back pain can often be symptomatic of an enteroccous infection as it loves your kidneys and higher urinary tract.  It doesn't have to sting to mean you have an infection.  Certain bacteria produce different symptoms and your urine samples are clearly showing infection by dipstick.  Sadly 50% of laboratory results are now incorrect as the testing system is so bad and hasn't been overhauled for over 50 years.

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.  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 and see if that helps.  Ideally speak to your local health food shop and get some advice there.  The COB Foundation have a nutritionist you can speak with to help with a gut programme and also suggestions for your bladder.

5.  Wipe front to back always.  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 (Boots make one or Natracare) 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.  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.

6.  If you are peri or menopausal, it cannot be emphasised enough how vital localised oesteogen is to the urogenital tract.  As the ages advance your bladder, urethra and vagina become dryer, more brittle and lose their natural plumpness and ability to cope with bacteria.  The urethra widens allowing more bugs in.  Talk with your GP about Vagifem pessaries or Ovestin cream.  Obviously a full medical history must be taken into account.  An excellent website to look at is Menopause Matters for further advice.  Lots of ladies develop UTIs in their 40s, 50s and 60s because of lack of oestrogen.  Your bladder and in particular your urethra have lots of oestrogen receptors in them as if you aren't getting the oestrogen they need, it makes them fare more prone to infections.  Your vaginal PH changes as well allowing bacteria to flourish which can make their way to your urethra and bladder setting up infections.  Your GP should be able to prescribe this for you.

Following seeing your urologist and getting the results of your procedure, I would ask him/her the following questions:

1. Ask him specifically what he feels is the key problem with you.  Is it a low grade lingering infection not cleared by low dose antibiotics, painful bladder syndrome, IC or recurrent infections caused by menopause?  I assume you have had scans to rule out any physical issues such as strictures, blockages etc in your kidneys, bladder or urethra as part of the lead up to the cystoscopy procedure?

2.  Ask him what treatment paths he wishes to follow.  Once he has outlined these depending on his diagnosis to 1 above, ask for his success rates.  For example if he suggests instillations, how successful have these been both short term and long term.  Ask for success numbers. Any good urologist should have these.  Explain that you need to know this before agreeing to any treatment plan so you can make an informed decision.  Does he have any leaflets about his treatments you can take away with you?

3.  If he suggests long term low dose antibiotics, please ask him about setting up possible antibiotic resistance particularly if the cultures are not specifically finding a bug even though there is evidence of an infection through the continuing blood in your urine.  Would he be prepared to prescribe a high dosage antibiotic for a period of time  such as Cephelexin?  The BHUK office can send you some papers written by a Professor of Medicine here in the UK about urine microscopy and the treatment of low grade undiagnosed infections.  His treatment methods are high dose antibiotics for a period of time but he is seeing excellent results and these are often patients who have had every treatment under the sun without success.

4.  Would he be willing to work with you using localised HRT to reduce your symptoms.  Has he had success with patients going down this route, particularly those going through the menopause or who are post menopausal.

Finally consider joining BHUK.  They send out a membership newsletter 3 times a year.  Have a very active forum and have an advice line you can call Monday to Friday and full information packs are available on all bladder related topics plus an excellent website.  Nobody wants to have bladder issues and their advice and help can often sort things out very quickly.

Keep us posted and I hope this advice helps

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LouMartin

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Reply with quote  #5 
Kate After my cystoscopy in Sweden I was not given antibiotics but I had had painful bladder and severe frequency urge for some time. I was given Betmiga which has thus far not helped (2 months). The diagnosis from him (he never did urine culture) was an overactive detrusor muscle. I should try and get rid of my anxiety, take the meds and come back in 6 months. Wow, what a great support that was to a desperate lady. Anyway I didn't see your post before I had the treatment and didn't ask him anything. He wouldn't have given me any help anyway. Totally unhelpful and not interested. Before I had seen him I ended up in A and E twice in 4 days in desperate pain. They claimed they found no infection both times (one had included a culture growth for 3 days, the other just did a dipstick which was worse than useless). They gave me antibiotics called Selexid for 5 days anyway I went back to a and e again 3 days after my cystoscopy as I was in terrible pain. They gave me 5 days furadantoin and did a culture. It came back with e coli. The drugs didn't clear it so they tried Amoxicillin 500mg but I had an allergic reaction to it on the first dose. So they changed it to ciprofloxacin 500mg. I did a new culture afterwards which still showed the infection. Then we came to England where I have registered with a gp. I went to see a private urologist  (just googled him.l, as I had enquired to you guys but email reply went into junk folder so I didn't see your recommendation ) who is clinical director at Southmead but has a private practise at the Spire. He suspects it may be a long term chronic infection but wanted to refer me for a cystoscopy with biopsy . I have to go NHS as can't afford otherwise. So he wrote to my go and asked for a referral. It can take average 66 days. He also put me on low dose 3 months ntrofuradantoin 50mg. In the meantime I went and saw my new to who did a urine test which came back clear but They only did a dipstick test! Argh! So now I have no idea if I have an infection or am just suffering with pain for the fun of it as I am also suffering with anxiety and have been for months. I don't seem to have a next step. I am going to my go next week and will ask for a follow up. As part of all this I also went to visit a gynae as I was in pain in areas of my vulva also. I had not gone on oestrogen since menopause. She put me on a low dose HRT and has done an MRI and CT scan of my pelvic area. Nothing obvious on inspection but too painful for her to see cervix so not good. I will return for a follow up next week. Oh and for the cherry on the cake so to speak, have had a haemarroid for 6 weeks! Any suggestions? I was thinking it would be amazing to try and get a referral to see the Prof who plainly knows what he is talking about about these issues that may or may not be a biofilm infection? Happy Bank Hols. Am off to the loo again!!! Louise

Mod edited out names per forum rules.
Lola2018

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Posts: 14
Reply with quote  #6 
Hi, this reply may be a little late but I have been suffering pain and mfrequency for the past eight weeks following a uti brought on, I suspect, by antibiotics I took for a sinusitis infection. I have tried the IC diet, no caffeine, alcohol or citrus with little effect. Taking a low does antibiotic every night, so far little effect. I am starting to wonder if this type of pain and frequency eventually burns itself out, that is what I am hoping but if you do get any 'brilliant' response please let me know.
heathwhit

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Reply with quote  #7 
Why would you think abs would give you an infection, i find certain ones inflame my urethal and vulval areas don't know if that is actually my bladder or not but makes me very wary of taking them.
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Lola2018

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Reply with quote  #8 
When I developed the UTI the doctor said it may have been because the antibiotics I had taken for my sinus infection had killed all the good bacteria and left me susceptible to contracting a UTI. I did not know this was the case but the UTI symptoms started five days into the antibiotic treatment.

I have now had symptoms for 11 weeks and the consultant I have seen mentioned IC. This has really alarmed me as I had two bouts of UtI symptoms last year which resolved in three to four weeks. This one is proving far more difficult to treat and I am fearful if won't ever disappear.
Vivienneb

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Reply with quote  #9 
Hi team

I've had IC for 6 years (since 32), and tried everything and read most things at the beginning

Kate - pain
1. Flare up - pain at 9-10. Paracetamol , codeine , diazapam (ask for rectol if you've eaten and it goes straight into the pelvic area ). Then zopiclone to sleep .

2. Tens machine (can be ordered for £5) on e-bay or any pregnancy site and Argos (they are £30). Put on lower back and above the pubic line . Or anything that vibrates (massager etc)

3. Hot water bottle on your back (not front) , you can try ice on the Bladdar

4. Rest - drink botteled mineral water . Evian or ph higher than 7.5 and low potassium. Volvic is good too.

5. Rest until pain goes . If you are not used to painkillers just be mindful as you'll only need a small amount.

6. Accupuncture- can stop pain immediately, reply if you want more info on this.

7. Preleif tablets (made esp for IC) , order from i.herb

Once pain /flare has reduced continue with paracetamol, whatever other stuff you have been given . You will be more sensitive to food

Also a lot IC patients are unaware about cleaning products and laundry detergent.

Ensure detergent is Eco friendly, no lemon , no bleach . The smell can set off a flare . Just remove it from the house and see if it makes a difference .

Hope that helps (it's the only combination that worked for me ) .

X
ModeratorKate

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Reply with quote  #10 
Hello Vivenneb
Welcome to the Forum and for taking time to offer support. Always helps anyone looking for answers.

On a personal note any smell of Bleach will set me off ,

Hope you are feeling better, do keep posting and also remember, we have a fantastic  Membership at BHUK, which has such interesting info in the quarterly magazine,as well, as, of course our advice line for help and support.

Kind regards
Kate




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Vivienneb

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Reply with quote  #11 
Thanks Kate,
Yes the laundry powered /bleach took me 3 years to work out? Every time I entered the laundry I'd get a flare up.

I've joined the group as I used to read the US version . In good news I nearly had full remission. That's are 3 sets of dmso, elmiron, Accupuncture twice a week, all the natural remedies and elimination diet then a lot of work to eat normal foods again , immunologist, psychiatrist, SSRI (avanza) put on 16kg! However seem to get rid of the IC .

Now however I've been back in the UK and stopped having the Accupuncture and responsive the Drs in relation to pain can eat about 5 foods, in pain prob 6 out of 7 days, struggling with weight . In the last 6 months my dr changed my meds and the IC has come back , the tiniest bit of pepper or even smell of lemon and I go into pain.

I'm looking for good suggestions for Drs and pain clinics (I'm central London) as we all know visiting a&e is stressful . In the middle of a flare up now which I can't get rid of .

I wanted to be able to show the GP the latest research from urology society and that the pain is real, as apparently I'm the only IC patient in her practise whose IC has such an impact on life quality. I've done enough crying in urologist offices and not going through it again. Not managing the pain quickly enough must have bought it back. So I'm starting from scratch, however with a lot less money and resources to do it with. I feel IC patients compared with from what I've heard the US get treated badly. Until one finds a good specialit or dr.

I now feel I need counselling again as well. I'm back on preleif , haven't taken my normal combo for flares , and need to find money to go to Accupuncture or through the pain clinic . Currently I can eat 5-10 foods. Even plain eggs cause flare ups.

My partner is very supportive however my previous engagement ended because of it , and I don't want to let that happen again.

So any suggestions for empathetic Drs, pain clinics or what to say at A&E would be useful.
ModeratorKate

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Reply with quote  #12 
Morning Vivienneb
"So any suggestions for empathetic Drs, pain clinics or what to say at A&E would be useful. "

Do please contact the Office BHUK. they will have all the information to assist you,

We do not allow names of professionals here on the Forum, but you can obviously contact each other by PM or E, mail with info.

The office is only small, and becomes very busy, so do leave your contact and someone WILL get back to you.

Kind regards
Kate




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Vivienneb

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Reply with quote  #13 
Thanks Kate, I will call
It took exactly 15 hours to get out of severe pain . Today is now a recovery day.

I'm interested in hearing any new or things that have worked for flare ups in the UK. No names just ideas. What people do on recovery days .

On the up-side this condition does go into remission and I started working again as a high level project manager , so if you are new keep your head up high and focus on what works for you. Some of the treatments are painful , however be clear what is and isn't working, keep a note of how long medications should start seeing an effect and know that it does and will pass. Hope that helps .

Look for people /health care professionals who support you . As feeling helpless is no fun , even now if I'm put down I have to remember my resourcefulness and self worth.

chrismm

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Reply with quote  #14 
Hi Vivenneb

May I say that I admire your positive attitude to this illness.  I always keep in mind that doing nothing will not make me any better.  I am lucky that Elmiron keeps me symptom free but I have a standby list of other treatments to try if the Elmiron stops being effective.  Like you I always see the importance of seeking out the professionals. When I first had this illness (25 years ago) my GP gave me the best advice.  He admitted that he knew nothing about it and told me to "get on the internet and find the experts".

With best wishes for a symptom free future.




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Vivienneb

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Reply with quote  #15 
Hi,

That's so wonderful that Elmiron works (I had no side effects) , I paid for it myself for a year , with all the other treatments dmso, natural treatments it was tricky to work Was working which when I started with the immunology clinic to keep a record and getting me to introduce a food a week (I was very strict). Thank you again I tried very hard, researched everything and became near symptom free . I had a a good treatment plan in place if not .

However I'm feeling absolutely helpless tonight. I've been in a 15 hour flare up, and then the pain came back. I called 111 and found my dr has said not to give any pain relief to me. I'm not only appalled , as her changing my medication that I found worked has put me back 4 years (as I was in 5 day flare ups while over seas . )The dr isn't back until Tuesday . I now have to go into urgent care tomorrow as I'm too sore tonight , and try and sort it out . I'm not even sure what I say .

I'm a 38 year professional (I have job interviews next week), and to even tell my partner was embarrassing. So I'm positive however it's so important to have supportive practitioners around you. Don't settle for being put down just because as I know I live such a healthy lifestyle I look 10 years younger than my friends . There has to be some benfits to an alkaline diet!

I've asked the nhs for a social worker . I'm so concerned about being in pain all weekend .
I hope tomorrow goes ok . When I'm out of pain I'll do more research.



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