1. < Kidney & Bladder

Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

Posted by lucy155 @lucy155, Jan 25, 2023

With a history of 4-6 UTI's a year for over 8 years, I have been very frustrated with my medical team's inability to uncover the "why". 2022's UTI's have progressively gotten more frequent AND progressively more painful in the lower pelvic region. The pain includes the typical UTI systems of burning, feeling of frequent urination, but not being able to actually pee. In the last three months, I have had two emergency catherizations due to extreme urine retention. The UTI's seem to be recurring regardless of antibiotic treatment. Klebsiella is a new bacteria showing up in my cultures beginning in November, 2022. Since then I have had 6 UTI's. On Christmas Eve 2022, I had symptoms of a UTI during the day, by bedtime I had level 7-8 lower pelvic area bladder pain. I could not sleep. Took Tylenol, AZZO, and finally started Augmentin 875mg 2x/day for 7 days on my own knowing I was treating without a culture or doctors direction. I have had two more cultures done since then due to painful bladder (painful to walk) and other UTI symptoms. First one came back positive for Klesiella and e-coli. I was treated for 8 days with Augmentin. Bladder pain persisted and 10 days later another culture done, but came back negative for any infection! My bladder pain level is a constant 5-6, like walking around with a migraine headache in my pelvic region.

My PCP's physicians assistant, who I saw yesterday, suggested Bladder Pain Syndrome / Intercystal ?? as a possibility. Not much coming up on this Mayo site. A couple presentations showing up on You-Tube. Does anyone have this condition? What has helped getting the inflammation under control and ease the flare ups of bladder pain/UTI's?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

lucy155 | @lucy155 | Feb 4, 2023
In reply to @dks "Hi Lucy. I'm so sorry you're having such a horrible time getting things calmed down. Last..." + (show)
@dks

Hi Lucy. I'm so sorry you're having such a horrible time getting things calmed down. Last year, I noticed my eGFR had been decreasing over the past 4 years and my Primary kept telling me I probably was drinking enough water and was just dehydrated. So, I did a little research on methamine and found studies had been done showing that the drug should be used "with caution" on patients with kidney problems. I then looked at my lab results before my use of methenamine, as well as during the 3.5 years I was one it. I could definitely have been wrong about my concern but when I spoke with my Primary and my Urology PA, they both did some research on their own and concurred that it might be prudent to lower the dosage (if I wasn't ok with stopping it altogether - which I wasn't). I have had such great results with my IC problem by using the methenamine, together with the D-Mannose, that I think my mind couldn't wrap around the possibility that I might start having the bladder infections so frequently again (I haven't had one since July 2019). So, we came up with a plan to cut down to only one methenamine and one D-Mannose per day. I did fine, so we then cut down to only a half methenamine at night and one D-Mannose in the morning. I'm still doing fine. However, I still have trepidation about stopping the methenamine altogether. I know it's probably just a placebo at this point but it's still a security blanket for me. I sure hope you can find a regimen that will help you. Take care.

Jump to this post

Thank you... you were able to paint a good picture of how we must do our own research! I'm glad you found a combo that works. I had an appt yesterday with my Urogynocoloist. I was nervous mentioning that as a result of watching several You-Tube videos, I had started myself on 10mg of amitriptyline (I had in medicine cabinet, but never used for diabetic neuropathy pain). My doctor responded positively, saying she recommends 25mg of amitriptyline for BPS/IC and it works for many patients. After 6 days on this drug, my bladder pain level decreased to a level 4-5. It feels good to be able to walk without level 7-8 pain in my pelvic region. I'm starting the 25 mg tonight.
I'm going to stay on the D-Mannose. My pain has definitely improved this week. Hope it continues!

REPLY
3 replies
collenp | @collenp | Feb 10, 2023
In reply to @lucy155 "Thank you for your reply. I just came back from my urogydnocologists office where I learned..." + (show)
@lucy155

Thank you for your reply. I just came back from my urogydnocologists office where I learned how to self-cath in an effort to stop UTI's and bladder pain. Not fun! It's agreed that BPS/IC is a logical possibility. I had a cystoscopy done last month as part of a sigmoid colon resection surgery. The urologist said there was nothing unusual with the lining, but I did have a UTI. I also had 3 different pelvic CT done in 8 weeks for the colon perforation, but nothing was found on the bladder. I'm hoping for better answers with my new urogynocologist. I see her again next Friday.

Jump to this post

What caused the colon perforation?
I hope you are feeling better.
Take care

REPLY
1 reply
lucy155 | @lucy155 | Feb 10, 2023
In reply to @collenp "What caused the colon perforation? I hope you are feeling better. Take care" + (show)
@collenp

What caused the colon perforation?
I hope you are feeling better.
Take care

Jump to this post

Hi @collenp ... The colon perforation and abscess was a result of undiagnosed diverticulitis. It just happened to perforate 48 hours after my total hip replacement and so it was an emergency room visit and immediate hospitalization. All is well now after the colon resection, which had to wait till my hip replacement was more stable. It's now 8 weeks after the sigmoid colon resection and I ate chili this week! Not bad considering. Feeling much better!

REPLY
1 reply
collenp | @collenp | Feb 10, 2023
In reply to @lucy155 "Hi @collenp ... The colon perforation and abscess was a result of undiagnosed diverticulitis. It just..." + (show)
@lucy155

Hi @collenp ... The colon perforation and abscess was a result of undiagnosed diverticulitis. It just happened to perforate 48 hours after my total hip replacement and so it was an emergency room visit and immediate hospitalization. All is well now after the colon resection, which had to wait till my hip replacement was more stable. It's now 8 weeks after the sigmoid colon resection and I ate chili this week! Not bad considering. Feeling much better!

Jump to this post

You have been through so much. So many illnesses, so many complications. I am relieved to hear you are on the amends. I try to avoid going to doctors but I am 66 years old and some serious medical symptoms are cropping up. I have an appointment with urogynecologist for prolapsed bladder but pancreatits has come back, I am just taking it easy and trying to rest alittle. I miss my grandchildren. My daughter and 15 yr old granddaughter have covid really bad right now.
You take care and rest.
💗

REPLY
1 reply
diane | @dks | Feb 14, 2023
In reply to @lucy155 "Thank you... you were able to paint a good picture of how we must do our..." + (show)
@lucy155

Thank you... you were able to paint a good picture of how we must do our own research! I'm glad you found a combo that works. I had an appt yesterday with my Urogynocoloist. I was nervous mentioning that as a result of watching several You-Tube videos, I had started myself on 10mg of amitriptyline (I had in medicine cabinet, but never used for diabetic neuropathy pain). My doctor responded positively, saying she recommends 25mg of amitriptyline for BPS/IC and it works for many patients. After 6 days on this drug, my bladder pain level decreased to a level 4-5. It feels good to be able to walk without level 7-8 pain in my pelvic region. I'm starting the 25 mg tonight.
I'm going to stay on the D-Mannose. My pain has definitely improved this week. Hope it continues!

Jump to this post

I hope your pain decreases! I know the feeling of being almost "happy" with a 4-6 pain level when something starts to work! Best to you as you heal from this bout!

REPLY
lucy155 | @lucy155 | Feb 15, 2023

As an update, I went for my follow up with my urogynocologist. She upped my amitriptyline to 25 mg each night. I told her I still had pain and burning when urinating, but my bladder pain was much improved. The culture came back positive for Klebsiella and yet a new one for me... citrobacter-fruendii. She also inserted a pessary to lift my bladder. I feel the best today than I have felt in months! No bladder pain, no burning and no difficulty with retention (possibly because of the pessary??). It's only been three days... but feeling hopeful!
PS... Does anyone else have to wait 6 Days for a culture to come back? It's a tough time waiting with a UTI! There's gotta be a faster way!

REPLY
diane | @dks | Feb 16, 2023
In reply to @lucy155 "Thank you... you were able to paint a good picture of how we must do our..." + (show)
@lucy155

Thank you... you were able to paint a good picture of how we must do our own research! I'm glad you found a combo that works. I had an appt yesterday with my Urogynocoloist. I was nervous mentioning that as a result of watching several You-Tube videos, I had started myself on 10mg of amitriptyline (I had in medicine cabinet, but never used for diabetic neuropathy pain). My doctor responded positively, saying she recommends 25mg of amitriptyline for BPS/IC and it works for many patients. After 6 days on this drug, my bladder pain level decreased to a level 4-5. It feels good to be able to walk without level 7-8 pain in my pelvic region. I'm starting the 25 mg tonight.
I'm going to stay on the D-Mannose. My pain has definitely improved this week. Hope it continues!

Jump to this post

Great news! I hope you continue feeling better each day!

REPLY
poppy67 | @poppy67 | Feb 17, 2023
In reply to @lucy155 "Thank you... you were able to paint a good picture of how we must do our..." + (show)
@lucy155

Thank you... you were able to paint a good picture of how we must do our own research! I'm glad you found a combo that works. I had an appt yesterday with my Urogynocoloist. I was nervous mentioning that as a result of watching several You-Tube videos, I had started myself on 10mg of amitriptyline (I had in medicine cabinet, but never used for diabetic neuropathy pain). My doctor responded positively, saying she recommends 25mg of amitriptyline for BPS/IC and it works for many patients. After 6 days on this drug, my bladder pain level decreased to a level 4-5. It feels good to be able to walk without level 7-8 pain in my pelvic region. I'm starting the 25 mg tonight.
I'm going to stay on the D-Mannose. My pain has definitely improved this week. Hope it continues!

Jump to this post

Hi Lucy, I’ve had IC for almost 30 years. After going through menopause my IC got much better! Then I got Covid two years ago and now have post Covid. My IC has flared up as has my arthritis. Post or long Covid attacks your weakest areas so this made sense. I’ll have 4 to 5 good days and then 2 bad ones. I’m hoping as Long covid wanes so will my IC.
Can you tell me what D-mannose is? I’m not familiar with it. I was so sorry to read about your pain and glad to hear you have found some relief. After having IC for so long myself, I,ve tried almost everything. Feel free to question me if I might shed light on something

REPLY
poppy67 | @poppy67 | Feb 17, 2023
In reply to @collenp "You have been through so much. So many illnesses, so many complications. I am relieved to..." + (show)
@collenp

You have been through so much. So many illnesses, so many complications. I am relieved to hear you are on the amends. I try to avoid going to doctors but I am 66 years old and some serious medical symptoms are cropping up. I have an appointment with urogynecologist for prolapsed bladder but pancreatits has come back, I am just taking it easy and trying to rest alittle. I miss my grandchildren. My daughter and 15 yr old granddaughter have covid really bad right now.
You take care and rest.
💗

Jump to this post

Collenp, I am 67 and can understand what you are dealing with. I had Covid 2 years ago and have been hit with so many health issues this past year so know exactly how you feel. I am sorry to hear about your daughter and grandchildren. I’m sure you do miss them. Hopefully they will get the all clear soon and you can see them again. Take care of yourself. I am thinking of you and will keep you in my prayers.

REPLY
1 reply
collenp | @collenp | Feb 17, 2023
In reply to @poppy67 "Collenp, I am 67 and can understand what you are dealing with. I had Covid 2..." + (show)
@poppy67

Collenp, I am 67 and can understand what you are dealing with. I had Covid 2 years ago and have been hit with so many health issues this past year so know exactly how you feel. I am sorry to hear about your daughter and grandchildren. I’m sure you do miss them. Hopefully they will get the all clear soon and you can see them again. Take care of yourself. I am thinking of you and will keep you in my prayers.

Jump to this post

Thank you Poppy for your kind words.
As we age so many things change in our lives. Our health deteriorates and visits to the physician offices multiply. I educate myself and learn as much as I can before I go to see a doctor so I can have the best chance for the correct diagnosis and best treatment plan.
I hope your covid symptoms resolve and you feel better from all other health issues. Take care.
💗

REPLY
View MoreView Less
Please sign in or register to post a reply.