Bladder cocktails for urethral pain?

[PC82]

Hi everyone. This is my first post. I am newly diagnosed with IC although I think I’ve had it for 10 years. Unfortunately, I went into a horrible flare about 3 months ago from a UTI and now I can’t come out of it. I do not have bladder pain at all. I only have urethral pain, urgency, and frequency. My urethral pain is so bad I can barely cope. I changed my diet completely about 2 months ago, take aloe, d mannose, Claritin, Tagamet, and drink alkaline water. None of that has worked. Almost 2 weeks ago I had a hydrodistention as I didn’t want to go with amitryptiline. The hydro didn’t work. ☹️ Next up this week are bladder cocktail instillations, and I’m starting amitryptiline tonight. Anyone have success with the instillations if they only have urethral pain and not bladder pain? Thank you!

[ICNDonna]

First of all, I'd like to say to the IC Network. I'm so sorry you have interstitial cystitis, but it's good that you have a diagnosis.

Do you know the contents of the planned instillations? There are several different combinations --- if you don't know, I suggest you telephone your doctor's office and ask --- and post.

Sending well wishes,
Donna

[PC82]

The bladder cocktail is Heparin, Lidocaine, and Bicarb. I’m desperate at this point as I’ve been in agony for 3 months now with zero relief. It’s only my urethra. I started amitryptiline 2 days ago.

[ICNDonna]

That's a combination that could ease the discomfort. I do suggest you ask about having the lidocaine be instilled first, then the bicarb and heparin. When I had instillations, having the lidocaine instilled first it helped ease any discomfort from the catheter. Please let me know how it goes. I did self instills of heparin and bicarb and it helped me.

Is the amitryptiline helping you get some rest?

Warm hugs,
Donna

[PC82]

Thank you Donna for your input! I called and had the bladder cocktail appointments set up for next 6 weeks as I need them late as possible due to work. I will ask about lidocaine first. My biggest reservation is making urethral irritation worse with the catheter since that’s my area of pain. I started the amitryptiline on Monday at 10 mg. I’ve had 3 doses so far. I’ve always slept really well. I was nervous about the meds making me so sleepy the next day since I can’t drink caffeine and have to get up at 5 am. I took the first night dose at 9 pm and could NOT fall asleep. It was almost midnight before I fell asleep. I took the next one the next night at 8 pm and struggled again to fall asleep. I took the next one last night at 6:30 and fell asleep ok. I’ve had no side effects other than that and a little extra drowsiness for about an hour at work in the morning, but that’s it so far. I’m shocked as I’m so sensitive to meds. I’ve gotten no relief yet so I’m not sure how long it typically takes. I just hope so badly it helps urethral pain.

[ICNDonna]

It sounds like the medication may be doing what it needs to. My husband took a 10 mg tablet every evening for years for arthritis pain and it helped significantly. Our doctor explained that amitryptiline works by interfering with the pain receptors in the nerve system. It usually causes sleepiness so you might want to talk to your doctor about the effect it has for you.

Let me know how you do with the instillations --- and please feel free to post any questions you have. I can't offer medical advice, but can share experience.

Donna

[PC82]

Thanks Donna! I’ve been on the amitryptiline for 1 week today, and I’m happy to report it worked! I feel 100 times better over the last 2 days. My bladder instillations were to start tomorrow, but my daughter tested positive for Covid today and I’m symptomatic so I had to cancel them. Maybe I won’t need them!

[ICNDonna]

Thanks Donna! I’ve been on the amitryptiline for 1 week today, and I’m happy to report it worked! I feel 100 times better over the last 2 days. My bladder instillations were to start tomorrow, but my daughter tested positive for Covid today and I’m symptomatic so I had to cancel them. Maybe I won’t need them!

Please let me know how you are doing. My daughter and I were quarantined for two weeks (ending on Thanksgiving day). It's difficult to avoid exposure. Thankfully, neither of us had any symptoms. I hope you will be one of the light cases --- please keep me posted.

Warm hugs,
Donna

[PC82]

My urethral burning came back now that I’m over Covid. Now I don’t know if it was Covid making me better as my body was focusing on fighting the virus instead. Then again, maybe I need to up the amitryptiline. Now I just don’t know. ☹️

[ICNDonna]

I'm so glad you're over the Covid --- so many are having severe illnesses. It's a really scary time. I suggest you give your doctor's office a call and ask before increasing your dose. You might want to do the instillations now. It just might be the key to improvement.

Donna

[PC82]

I called today, and he upped it to 25 mg since I’m not having any side effects. My first instillation is now not scheduled until January 13th since they canceled my first 3 due to Covid. It’s a very large urology practice so getting appointments can be hard!

[ICNDonna]

I suspect most urology clinics have some waiting times for appointments. Please keep in touch.

Donna

[PC82]

So I finally had my first bladder instillation today. I developed a UTI AGAIN last week and finished my antibiotics yesterday. I’m worried about getting yet another UTI from having a catheter placed every week, but I need relief somehow. I guess we will see if this helps. I’m starting to lose hope. ☹️

[ICNDonna]

You might want to think about something like D-Mannose to help avoid infections. And be sure to drink enough water --- that can help avoid infections. I've had instillations many times and never had an infection after one in the doctor's office.

Good luck!
Donna

[PC82]

I take D- mannose, and I drink tons of water. I just get them constantly. They are never the same bacteria and rarely are they E. coli. I’m broken! I still have no relief with the urethral pain! I’m trying cornsilk next. It’s being delivered to my house today.