Improvement on Elavil?

[Jereme]

I have a question about the whole use of Elavil. I'm wondering how much it improved the symptoms. I mean how bad was the pain and frequency before using the Elavil? How good were things after using Elavil?

[SharonA]

This is a post that I wrote just a few days ago regarding my experience with Elavil (Amitriptyline).

The symptoms that sent me running to a Urologist were frequency/urgency along with terrible bladder pain. The Urologist diagnosed IC by doing a cystoscopy/hydrodistention under anesthesia, but he would do nothing to treat the pain. I have no idea as to the degree of IC I have. He did not say and it is not on the surgical report.

What I can tell you is that I would rate the pain I had on the pain scale (from 1 - 10) as about a 20. It really was very, very bad and was an every day occurrence that lasted for several months.

Then I found a PCP who understood just how much pain IC can cause and was willing to help me. She started me on a low dose antidepressant that began to help almost overnight.


There really are no words to describe what the pain was like for me in the beginning except to say it was totally debilitating and absolutely the worst pain I have ever had...and I have been through childbirth.

Now, because of Elavil, I live a pretty normal life without that terrible day to day pain. Most days I feel very good. I do have an occasional flare, but they are nothing like what I had in the beginning and they usually last a few hours. The flares I have now feel like a slight burning in my bladder. I have learned to increase my intake of liquids to flush the urine out of my body if I think the flare was induced by foods/drinks. I also have "stress related flares" that go away once I stop feeling stressed.

:) :) :)

[Jereme]

Thank you for the reply. That sounds like an aweful experience. Why is it that urologist tend not to want to help with IC? This isn't the first time I have heard that someone needs to go to more than one urologist or doctor for help.

Anyways, while on the Elavil, how are the symptoms now? Are they gone? Would you rate them at a 2-3...etc?

Thanks again for any type of responses I get. I do appreciate the help and support.

[SharonA]

I added a few things to my last post to explain things a little better.

Symptoms now are anywhere from as low as a 0 to as high as maybe a 3.

Not all Uros are like the one I had...although he did diagnose me in a matter of a couple of weeks. In fact, he told me at the very first visit that it was probably IC that was causing my symptoms. For that I am forever grateful. There are many very caring and helpful ones who will do everything they can to make sure their patients are not in pain.

[Jereme]

Thanks again for the reply. I appreciate it and that was very helpful to me.

[lan]

Hi Jereme,
I was suddenly struck with UTI like symptoms in Dec 2006. I had freq, urgency, and discomfort that I would rate as a constant 6 or 7 on the scale of 0 to 10.
My cultures came back negative for UTI but I was treated with antibiotics for 3 months (with little to no improvement) before I was diagnosed with IC in March 2007. I was prescribed Elavil and my symptoms very gradually improved. After a year on Elavil I am usually at a 1 on the scale of 0 to 10 and sometimes I even feel like a zero. Linda

[kadi]

I was voiding 60x a day & was in horrible pain before Elavil. I could not sleep more than 15 minutes at a time because the need to void was so uncomfortable. The first night I took 10mg of Elavil, I slept 4 hours straight & I was so grateful, I cried. After about a month on 10mg, I got to sleep about 7 hours with only 1 or 2 wakeups to use the bathroom. I increased to 20 mg which helped more. I did have to add other treatments to get well again, but Elavil was the first medication that helped me & is still a cornerstone of my IC treatment.

[Claredale]

I have been on Elavil pretty much from the beginning of my diagnosis. I am on Visteril now just to change things up a bit and hopefully stop the cravings for sweets. I like Elavil better, it helps with with my sleep even though I am on sleep meds (have been for years) I seemed to sleep better on Elavil. I will go back on it at my next appt in May.

I am like Sharon, I was diagnosed within a few weeks by a urologist that didn't know much about IC, but when he mentioned cystitus, my husband (mainly) and I looked it up on the internet and actually found IC and I took the info to my doctor and we agreed that I met the symptoms. He did the PST test and scheduled me for my hydro cysto within a few days. That was over 20 years ago now and he wasn't able to treat me once my disease progressed (not common) to the severe stage. I have truly been lucky with all my doctors in prescribing in prescribing meds and treatments that I research and take info to my appts. I go to a uro/gyno now. My last doctor was a pelvic pain specialist. She practices in Knoxville now, but I still email her from time to time to discuss various treatments as well. She is who referred me to my current doctor back in 2005.

Even thought I will probably be on some sort of meds for IC for the rest of my life, I have my IC symptoms pretty much under control and definitely watch for my triggers.

[Braedley]

my experiences on elavil are very similar to kadi & tracey83's..at the start of the onset of the IC, i was unable to sleep more than 15-20 min at night, then in the bathroom for hours at a time with no understanding as to what was causing it...
i was first put on ditropan xl which helped immensely but the pain was still an issue - eventually was put on elavil b/c it was deemed 'safe' for me to use while trying to get pregnant and during the pregnancy/for breastfeeding too by my doctors..

my uro was a jerk and told me it was all in my head essentially and refused to treat me with any meds - told me other people live with it every day just fine and i should be like them, they don't need meds...my family doc ref'd me to another uro b/c of those remarks and the refusal to acknowledge my pain/frequency/urgency...
the pain was so bad i was almost vomiting constantly..it was unreal..

now am on 50mg/night of elavil and tylenol arthritis 3x/day, if i didn't get up to feed my infant daughter i would sleep straight through the night but she dictates otherwise ;o)
during the day though i can usually be pretty "normal" and at night if i'm allowed to sleep better it's the same, i can go upwards of 6-8 hrs day or night w/out having the urge to pee...