Articulating Symptoms

[AnneLee]

I have had bladder issues since birth. My urethra was too small and until I was almost 4 years old my urethra would close completely and my parents had to take me to the ER. If people don't think you can have vivid memories from the ages of 2-4, they are wrong. I had an inpatient stay at age 3 and remember the entire experience. I remember coming home from a visit to my Urologist who performed painful diliations. It was November 22, 1963. I was three years old and it came on the radio that JFK had been assassinated. I remember watching his funeral on November 25th. I doubt these memories would be so clear if I hadn't been suffering with urinary pain.

I continued to be diliated on a regular basis. However, last year I developed a "different" form of uninary discomfort. My first two Urologist had since died and I was on my third Urologist! I have a very difficult time articulating my symptoms. What I describe as "throbbing" which is a miserable 24/7 symptom my husband thinks I am describing a contant urge to urinate. It might be a constant urge to urinate but it is much worse than a normal urge and it never goes away. I don't know if this is IC "pain".

I had my first procedure with RIMSO-50 in 2005. The procedure was a breeze and I had great results. However, my symptoms returned in 2006. At that time, I saw a urogynelogist who said I didn't have IC and just needed to "train" my pelvic muscles so that I could empty my bladder fully. He wanted me to see a Physical Therapist. When I contacted her she said she specialized in women who needed help with their pelvic muscles as a result of childbirth. I have never had any children. Sex has always been too painful to have on a regular basis!

So, I went back to my Urologist and had a second procedure with RIMSO-50.
This time the procedure was horrible. I woke up in terrible pain with a relentless urge to urinate. No pain medication I was given that day helped but within a couple days Pyrdriam Plus eased the pain. I had no improvement from the procedure. Now, I don't know if I really have IC. Is my "throbbing" the same as " IC pain"? According to Internet information, you shouldn't take Pyrdriam Plus for a long term basis because it is habit forming.

Right now, I am trying to decide if I want to try a medication for over active bladder instead of Emiron. I take other medications that effect the liver the same way Emiron does so that is a negative plus I don't want to lose my hair! I would welcome any suggestions regarding my situation.

[theclownster]

HI there! Welcome to the ICN! This is a great place for support - when I was first diagnosed I found so much comfort by just being here. I hope you find it to be helpful for you too.

Thanks for sharing your story with us. I've had IC now for a few years so I've had time to get regulated on my medications. However, I do still have flares and bad days just like everyone else. When I was first going through the diagnosis process I had that "throbbing" pain that is hard to put into words. It is so incredibly uncomfortable. I still get that way from time to time, but now I know how to manage it better and have a few emergency medications on hand to help (such as pyridium plus).

You are right - it is not good to take pyridium plus on a regular basis. I would have a discussion with your doctor to see what he/she suggests for you to do.

When I was first going through the diagnosis process, I was given overactive bladder meds (which I still use). I had to try a couple and at different doses because (sometimes) one of them made me retain my urine (which is very uncomfortable). I too was nervous about taking Elmiron. But nonetheless I tried it. After 4 or 5 days of initially taking it, I became absolutely miserable and was in a ton of pain and discomfort. I got an emergency appointment with my uro and he had me stop the Elmiron for two weeks. After two weeks he wanted me to try it again to see if it was the Elmiron or was it a coincidence. So I started it up again - my urgency, pain, frequency etc. all increased greatly - so I went off of it for good. My doctor said I should not take it again.

So - this is what I take now - Ditropan XL 15 mg, Atarax 25 mg, Elavil 25 (all at bedtime). I also take birth control pills - which help my IC too. I also take Allegra D for my sinuses during the day when needed. When I'm having a really bad day bladderwise, the Allegra seems to help during the day. Prelief was something I used religiously when I was first diagnosed (it's a dietary supplement that you take with food to eliminate acid). I no longer rely on it like I used to a few years ago.

You mentioned that your current doctor does not think you have IC. If you are not getting help from your current doctor you may want to consider getting a second opinion. Unfortunately, getting diagnosed with any bladder condition is not necessarily easy. Some of it is trial and error. Depending on the doctor, you may get resistence or a feeling like they aren't listening to you. I went through some of that - my recommendation to you would be to find a doctor that you are comfortable with and make sure you get a second opinion (especially if you have doubts). My second opinion urologist is now my current urologist - he has helped me more than anyone.

I hope that you are feeling better soon. Please continue to post whenever you need to. There's a lot of wonderful people here that will support you.

Take care,
Jennifer

[ICNDonna]

First of all, thinning hair only happens to a tiny percentage of people taking elmiron. If it's helping, I would encourage you to continue with it.

It's not always easy to describe the pain of IC. I have always thought it was very similar to a menstrual cramp, but multiplied many times. Mine feels like my body is trying to expel my bladder.

The medications used for overactive bladder are primarily antispasmodics, which can also work for IC

And --- I agree --- if you don't have confidence about what your doctor is telling you, it's time for a second opinion. I suggest a urologist for bladder discomfort.

Donna

[VickiB]

Hi AnneLee, welcome to ICN!

I know what you mean about remembering things from when you were very young. I do too, and I'll be turning the big 5-0 in a bit. Yet I remember where I lived when I was three. I remember the neighbor had goldfish, I remember the playground, I remember stubbing my toe. I remember my Mother crying when JFK was shot. Strange stuff!

I'm sorry you're going through this! I also remember how hard it was before I was diagnosed. -That wasn't so long ago though, so I remember it real well! Like Jennifer said, diagnosis isn't always easy! I know I've lost count of how many doctors I'd seen over the years trying to find out what in the world was going on with my bladder! Some told me I was absolutely fine (get over it), some suggested mental help (gee, thanks!), most just seemed perplexed (hey, me too!). In '04 I was fianally diagnosed with IC, began treatment, changed my diet, and am now nearly back to normal. In all honestly, it makes me kind of mad that no doctor had recognized IC before because I spent many years in a hell that I wouldn't have had to had I known of IC. Oh well, what's past is past!

You'd asked for suggestions. As jennifer said, if you feel you're not moving forward with your current Uro, seek a second opinion. I didn't do this for a long time and in hindsight believe that I spent more years in pain than I should have! I'm fairly certain most of the doctors I saw were not familiar with IC since none put 2 + 2 together! I believe many doctors work hard, keep up on things, etc, but as in any occupation there are some lemons out there........... I saw some of them!

About the Elmiron, some do well on it and some don't. For me, it was helpful, though it took about 8 months to really kick in. I had no hair loss, and from what I've read, that side effect only occurs with a very small percentage of people. Unfortunately, the only way you'll know how it'll effect you is to try it!

Anyway, it does sound like whatever you have going on is affecting your quality of life. I gave up for a long time on pressing for an answer. -I shouldn't have! If it is IC you're dealing with, you should know that most of us go on to find treatment & tricks that greatly improve our lives.

Vicki

[AnneLee]

Thanks for the Welcome and the information.

I must have been rambling because I am no longer see the doctor who told me I didn't have IC. Long story but after a lifetime of urinary problems (and having a Urologist since birth) I am very specific with my Urologist about what I need from him.

The choice of medications to take for my IC is complicated by the medications I am required to take for unrelated illnesses. I have a disabling autoimmune disease. I decided to try Detrol which I started today. I am very
optimistic!