Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

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.

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.

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

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!

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!

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!

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!

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.
💗

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.