Author Topic: Help! Urinary tract issues, pyridium, interstitial cystitis or...?  (Read 652 times)

heidiaj

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Hello fellow Sjoggies! I haven't been on here in awhile, but could use some good feedback from those who really know!  Today I'm celebrating my 62nd birthday, and I've had diagnosed Sjogren's for almost 12 years (wasn't sure I'd make it to this age...some hairy moments along the way!).  Recently I had the second occasion of hemorrhaging from the bladder.  There was no infection...just spontaneous hemorrhaging and pain (pyridium helps with the pain).  When this happened the first time 6 years ago, I was hospitalized for 5 days and on morphine. I spoke to my primary care doc from the hospital and he mentioned interstitial cystitis.  The hospital urologist (old guy who probably treated a majority of men) insisted it was hermorrhagic cystistis. In this recent go round, I had a CT scan and a cystoscopy to rule out cancer.  The urologist who did the cystoscopy also insisted it was NOT interstitial cystitis (but gave no reason for the hemorrhaging with no infection).  Has anyone had any experience with this?  It would be a great birthday present if someone could shed some light on this for me!

Agranulocytosis in '07 led to Sjogren's diagnosis; SS-A = >8.0; SS-B = 3.7; ANA Positive; ANA Titer = 1:32; Pattern: Speckled; RF = 132 IU/ML; Hashimoto's, fibromyalgia; IBS; GERD; on Gabapentin, Levothyroxine, Vitamin D + others

irish

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #1 on: April 02, 2019, 07:03:44 PM »
Hi, I am 76 and haver a whole lot of bladder issues but never the bleeding. I have had a whole boatload of pain. I have had only 3 bladder infections in my life. I was diagnosed with Trigonitis about 50 years ago. The trigone is the little triangle of mucus tissue that contains a lot of nerves and if found at the base of the bladder. This is the tissue that has the feeling of irritation or pain(whatever) when one has to empty the bladder. My pain over the years would come and go and I ended up having 3 or 4 episodes of bladder instillation of silver nitrate and argeryol---however it is spelled. This usually occurred 4 days in a row and literally burns the irritated tissue off.

Now, I am now having incontinence and a lot of bladder pain again and have been diagnosed with Interstitial cystitis and I am not totally convinced of it yet. Now, I don't know what to tell you but maybe, get records from all these doctors and get a second opinion and give copies of these records to the new Urologist. Also, make sure to tell the docs that you have Sjogrens. The Trigonitis that I had also gave bad pain in the urethra and the fact is, that Sjogrens affects the secreting glands in organs. The urethra and bladder have severing tissues. This is very complicated I think. The good thing is that you have had cancer ruler out.

My observation of my bladder showed a bladder that was very flushed and red all over the inside. I am amazed I didn't bleed. Sorry I can't be more help but good luck. Irish


Carolina

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #2 on: April 03, 2019, 05:21:59 AM »
Dear heidaj,

I have had microscopic bleeding, found in urine tests, about 20 years ago.  Then I developed Interstitial Cystitis and chronic UTIs, about 8 years later.

The worst that I had was a lot of pain.  I would have a UTI, take the medications, finish the medications, have a rebound of pain which I thought was another UTI, but was NOT.  And then, I did have another UTI, about two weeks later.  This was an awful cycle that went on for about 4 y years. 

I did NOT have blood/bleeding however, like you are having.

I stopped the UTIs in about 2012 because I started taking D-Mannose daily.  D-Mannose is a simple sugar, taken in a capsule.  It works as well as the antibiotics, and has no side effects, and is cheap, over the counter.

https://kresserinstitute.com/treat-prevent-utis-without-drugs/

https://www.ncbi.nlm.nih.gov/pubmed/23633128

I wish you well.

Regards, Elaine



Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Skylar

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #3 on: April 03, 2019, 07:53:05 AM »
I was diagnosed with Interstitial Cystitis (IC) by cystoscope years ago. I was lucky in that I didn?t have any urinary infections, it just felt like I was having infections all the time with the pain, burning and running to the bathroom constantly. I often had red blood cells in my urine but no where near enough to say I was hemorrhaging. I had a horrible reaction to the medications that the doctor prescribed so I just suffered through it. I wish back then I knew about the D-Mannose.

I looked up Interstitial Cystitis in Wikipedia and was surprised to see Sj?gren?s mentioned. In fact I, like probably most people posting here have had all those diagnoses- IBS, fibro etc.
?Some people with IC/BPS have been diagnosed with other conditions such as irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, allergies, Sj?gren syndrome, which raises the possibility that interstitial cystitis may be caused by mechanisms that cause these other conditions.?


Dear heidaj,

I have had microscopic bleeding, found in urine tests, about 20 years ago.  Then I developed Interstitial Cystitis and chronic UTIs, about 8 years later.

The worst that I had was a lot of pain.  I would have a UTI, take the medications, finish the medications, have a rebound of pain which I thought was another UTI, but was NOT.  And then, I did have another UTI, about two weeks later.  This was an awful cycle that went on for about 4 y years. 

I did NOT have blood/bleeding however, like you are having.

I stopped the UTIs in about 2012 because I started taking D-Mannose daily.  D-Mannose is a simple sugar, taken in a capsule.  It works as well as the antibiotics, and has no side effects, and is cheap, over the counter.

https://kresserinstitute.com/treat-prevent-utis-without-drugs/

https://www.ncbi.nlm.nih.gov/pubmed/23633128

I wish you well.

Regards, Elaine
I?m glad you posted this Elaine. When I switched to a whole foods, plant based diet (Dr John McDougall) my IC went into remission. I always thought it was because I had stopped eating foods that were causing irritation and inflammation in my body (Foods like diary). Since I eat a lot of whole carbohydrates which the body breaks down into glucose for the brain and muscles, perhaps I have abundant glucose for my body to convert into a therapeutic dose of  D-Mannose?

I mention my IC is in remission because the few times I?ve cheated on my diet, the IC comes roaring back and I?m running to the bathroom constantly with pain and burning.

You might want to consider changing your diet or trying the D-Mannose to see if they help. Changing your diet will help with most of the problems related to autoimmune disease but sadly it can?t repair damaged organs. I do think it?s slowed the development of new autoimmune diseases in me. D-Mannose could help IC and perhaps help hemorrhagic cystitis if that?s what you have.

Tharrell

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #4 on: April 03, 2019, 09:37:19 AM »
I too am diagnosed with IC and so is my daughter. My daughter is a sorry storry. She had symptoms since she was six years old when she started vomiting daily. She went through all the test having to do with her digestive tract, because she always complained about her stomach. Little did anyone realize her pain was further down! She suffered needlessly until we moved. A friend who worked for a urologist asked my daughter, who was 16 by then, where her pain was and lo and behold it was her bladder. After 10 years of misery she was diagnosed with IC. By then the damage was so great that due to scar tissue she could only hold 1/2 cup of urine! We think she most likly first had a UTI as a six year old that the doctor did not discover, hence all the vomiting and it turned into IC. Her current doctor first tried pyridium, but she could not tolerate it. She also does a 6 week course of weekly instillations of medications into her bladder when it is acting up. So do I in fact. It really helps calm the bladder. She also takes a, what she calls a man pill. It’s a medication given to men with urinary problems, but also works for IC. She used to do botox injections every six month, but had to stop. It was making it almost impossible for her to urinate and had to start self cath to empty her bladder. I have a tripple whammy for IC. I have not only sjogren’s, but I also have dysautonomia and Morvan’s syndrome which can cause a neurogenic bladder problem. I just roll with it and treat it with uricalm and do the installations when needed.
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,IVIG, sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,ranitidine

Skylar

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #5 on: April 03, 2019, 10:04:10 AM »
Tharrel, OMG, your poor daughter. I feel so sorry for her being so young and suffering from a missed diagnosis so early on and to be permanently damaged for life with scarring.

One of my daughters had what appeared to be a UTI the day we were moving to a new city. Sent her to her doctor! She was 17 yo and clearly could explain the problem, no question about miscommunication. The doctors office said she didn?t have any UTI and was just stressed from the upcoming move.  We moved the next day and that night, in the middle of the night I hear her crying iwhich was so unusual. Turns out she did have a UTI and even worse it had moved into her Kidney. We rushed her to the hospital and found it was resistant to most antibiotics. She nearly died and was in the hospital for two weeks. I was so angry at that doctor for missing an obvious UTI and not treating her immediately.  My daughter was hiding her pain from us at the time knowing we were so busy with the move. I have felt guilty this for many years.

heidiaj

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #6 on: April 03, 2019, 01:38:06 PM »
Thank you for the input, ladies!  As per usual, the experiences of people on this site give me so much to research and consider.  Irish, I have never heard about trigonitis and will look that up.  Elaine, I had also not heard of Mannose, and will look into that!  Skylar, your relating about how you become symptomatic when you go off your food plan was a jolt to my consciousness.  I have always struggled with sugar addiction.  Last year I lost 50 lbs with Weight Watchers and was eating so much healthier than I ever had.  In the new year, bad habits starting creeping back in, and perhaps that could have triggered this situation....who knows?  Tharrell and Skylar, I am so sad to hear of what your daughters have been through.  My daughter is 31 and has had some very strange medical issues with her eyes and her liver and kidney functions.  I swear she has Sjogren's.  Thank goodness she FINALLY has a job with health insurance, and I'm hoping she'll get some answers.  I asked her if she was afraid to be tested for Sjogren's markers, but she said she wasn't.  I know that an earlier diagnosis is advantageous (I was diagnosed at 50).  Tharrell, I would also be curious to know what the "man pill" is that your daughter takes.  I have appointments coming up with my primary care doc and my rheumy and hope to get some conclusions about why I would have this hemorrhaging with no sign of infection.  My best to all and their daughters...it's hard enough to suffer ourselves, but to see our daughters suffer is the worst.  Thank you all again for your responses. ~ Heidi
Agranulocytosis in '07 led to Sjogren's diagnosis; SS-A = >8.0; SS-B = 3.7; ANA Positive; ANA Titer = 1:32; Pattern: Speckled; RF = 132 IU/ML; Hashimoto's, fibromyalgia; IBS; GERD; on Gabapentin, Levothyroxine, Vitamin D + others

Tharrell

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #7 on: April 04, 2019, 07:34:24 AM »
I just asked my daughter, she takes Tamselosin, Elmiron and cyclosporine.
My daughter get’s pyleonephritis, or kidney infections, that do not show up in urine tests! We took her to a walk in 24 hour emergency clinic when she had severe flank pain. They tested her urine and it came back clean. On a hunch, the doctor decided to do a ct scan on her kidneys and found the kidney infection. He immidiatly gave her a 24 hour antibiotic IV and prescribed her keflex which is one of the very few antibiotics she is not allergic to. We told her urologist and asked him how we would know in the future if she had a kidney infection if it does not show in the urine. He assured us he would treat her by symptom as she knew her body best. Well that worked the first two times after fighting with the nurse who tried to tell her to go back to the er clinic to get the 24 hour antibiotic! Instead of just giving her the keflex right away. The last time the doctor told her she didn’t have a kiney infection, because her urine was clean! I think I’m going to ask her to be referred to a nephrologist! 
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,IVIG, sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,ranitidine

Deb 27

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #8 on: April 04, 2019, 01:20:19 PM »
Heidi, Sorry you have been going through all this.

Did they culture your urine or just do the dipstick in the lab??? That is the best because sometimes things don't show up on a dipstick. When I was much younger, I would get hemorrhagic cystitis. It was awful !! But, I also had big time infections with them. They stretched my urethra and I've never had bleeding UTI's again like those but I do get the occasional UTI.

Are they sure the bleeding was coming from your bladder and not your kidneys? Sounds like they did a CT scan, so that would rule out any stones.

I used to have a painful bladder but feel it's way better now that I am on an estrogen patch and take a vaginal estrogen tablet.

I hope they can find a reason this happened to you.

Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

heidiaj

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #9 on: April 09, 2019, 10:40:15 AM »
Thank you, Tharrell, for writing back with the meds and further experience.  All of it helps to give me some ammunition for my next doctor's appointment.  And Deb, thank you, too, for responding and being so kind.  Today is another painful day, so I just took a pyridium to see if I can get the pain to subside.  I am so grateful to have this group to check in with.  Hugs to all!!
Agranulocytosis in '07 led to Sjogren's diagnosis; SS-A = >8.0; SS-B = 3.7; ANA Positive; ANA Titer = 1:32; Pattern: Speckled; RF = 132 IU/ML; Hashimoto's, fibromyalgia; IBS; GERD; on Gabapentin, Levothyroxine, Vitamin D + others

heidiaj

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Re: Help! Urinary tract issues, pyridium, interstitial cystitis or...?
« Reply #10 on: April 09, 2019, 10:48:37 AM »
And Deb27, I know the doc did the dipstick while I was there.  I think he was also going to send it to be cultured, but thank you for the reminder, and I'll follow up.  Glad you have found things that have improved your situation, after the pain & difficulty you experienced.  And yes, I did have a CT scan that came back fine.  Here's to better days for all of us, and answers to our questions!
Agranulocytosis in '07 led to Sjogren's diagnosis; SS-A = >8.0; SS-B = 3.7; ANA Positive; ANA Titer = 1:32; Pattern: Speckled; RF = 132 IU/ML; Hashimoto's, fibromyalgia; IBS; GERD; on Gabapentin, Levothyroxine, Vitamin D + others