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Posts: 5
Reply with quote  #1 
Hi, I started having burning pain and tenderness in my bladder before eliminating a 6mm kidney stone. The pain returned after a month and 5 months later it is only getting worse although there is no evidence of kidney stones. I am now 42 and I have struggled with frequency and urgency since my 20s (although no pain, burning or cloudy urine). I never tested positive for UTI.

Prof ML suspects a deep infection with obligate intracellular microbes and put me on Azithromycin. My urine is always diluted and two repeated tests showed no white blood cells or urothelial cells. I am unsure what to do given that I am not a typical case of recurrent cystitis. 

Is there anybody in my situation - symptoms of pain, frequency and urgency, but no UTIs identified ever - who was helped by antibiotic treatment with ML?

The other urogynaecologysts I saw suspect painful bladder syndrome/interstitial cystitis. The IC diet is helpful although I am still in pain and I flare from the oddest things (half a cup of roiboos, for ex). I take quercetin and I felt it helps and have been drinking tons of marshmallow tea. 


Posts: 1,071
Reply with quote  #2 
Its a difficult choice isn't it. Just because cultures test negative for bacteria doesn't mean they are not there. UTI testing is horribly flawed but given how dilute your urine is, in seeing Prof ML he may not have been able to detect white blood cells or Epithelial cells. Its important if you do decide to go back to see him not to overdrink for a few hours however painful it may be. A final decision may also be whether you want to try antibiotics for a period of time to see if any relief is found (and it can take months).

I can say that Prof ML does have a good success rate in terms of getting people symptom free and off meds. A lot can depend on length of infection time but many have been discharged from clinic. However I won't lie as there are others who aren't off treatment and if they stop, symptoms come flooding back within days. Sadly now he tends to see the more complicated cases who have seen every specialist going and had been advised that they have IC or PBS.

The bladder lining can become horribly inflamed and symptoms can take longer to resolve than say an actual infection especially if a kidney or bladder stone has irritated the bladder lining. If you have struggled with issues of frequency and urgency since your 20s i assume OAB has been ruled out. Do you suffer from any other co-morbidites such as IBS which can put pressure on the bladder due to the bowel spasm. The immune system plays an important part so the more you can do to build up general body health away from the bladder the immune system will improve. Gut health is important as 80% of our health comes from the gut so if there is an imbalance there due to illness or chronic stress, this can affect the body as a whole due to the inflammatory process.

Have hormones ever been investigated? Frequency and urgency can sometimes be a sign of a hormonal imbalance such as low oestrogen or dominant progesterone which relaxes the smooth muscle wall of the bladder sending those need to pee signals to the brain. Not sure whether you have been on birth control for a while but especially as you are now 42 its worth looking into the hormone side of things as peri menopause can kick in from around 35 onwards with symptoms gradually creeping up.

If things are so bad you could look at a sacral nerve implant. A moderator on here has had one for a period of time and it is helping her significantly. The BHUK office can give you more information if you contact them.

Sorry not really a definitive answer I'm afraid just more options to explore.

Posts: 5
Reply with quote  #3 
I do suffer from gut problems: quite possibly IBS-D and suspected with SIBO (breath test came negative, but that's not a golden standard). I've used PPIs for the last 6 years and I hear those further increase the possibility of bacterial infection as well as interfering with nutrient absorption (I am very low in iron, for ex). But every time I try to wean off of them, my stomach kills me. My IC is very responsive to the IC diet (I was already on an alkaline diet for my stomach acidity), but I would like to try the more serious diets (candida, sibo). I feel quercetin also helps although it took me weeks to find a simple quercetin powder product with nothing added (I flared from a version containing bromelain).

Does the COB office have any resources on diets? Brizman's PhD dissertation or the Better Bladder Book and other publications looking at the gut-bladder connection? As far as I understand, the connection is now recognized by mainstream medicine as well (not just by alternative approaches). 

I have never been on birth control pills, but my period and quite possibly hormones play a big role as I am bed-ridden with pain during my period. This is why I pushed for female urologysts or gynecologists. What kind of tests should I ask for to investigate my hormones? I see people at King's College and will soon have an appt with a gynecologist at the Royal Free.

They recommend a simultaneous laparoscopy and cystoscopy, but I will refuse the cystoscopy. I just can't take any more pain. When they pushed the catheter in for the Urodynamic test, I thought I was going to die so they had to give up. I would like to eliminate the possibility of endometriosis, but I'm not sure they can do the laparoscopy without catheterizing.

OAB has symptoms of frequency and urgency, but I am now in a considerable amount of pain (the burning kind is responsive to diet in the sense that even trace amounts of acidic or just weird foods/drinks - like roiboos tea or water under 7ph - will trigger burning) so I think that qualifies me for an IC diagnosis. In fact, some urologists speculate that OAB might be a first stage of the syndrome we call IC/Painful bladder syndrome. In treatment, they obviously use much of the same meds. Mirabegron, for ex, helped me somewhat but gave me chest pains and retention. I felt I couldn't pee at all.

On neuromodulation: I am using an interferential machine after reading some of Dr Brookoff's research on the topic. He's unfortunately not alive still, but he developed the IF Wave that most americans use. I got an interferential machine off of the internet here and try to use it according to his indications. I'll hopefully learn more when I get to physiotherapy for pelvic floor dysfunction. The machine (like a tens but more powefrul) helps numb the pain, but has not reduced urgency/frequency.

On deep infections: has anybody succeffully treated deep, possibly biofilm infections with natural antibiotics? I'd feel more comfortable with those given my sensitive stomach/IBS.

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