I thought it was just another UTI, I went to my GYN for treatment and was put on the usual antibiotics, but this UTI never went away-I would return to my GYN office 4 more times until it was decided that I needed a sonogram and a CT Scan to see what the problem may be.
It was shown that my right ovarie was pressing on my bladder.
After some serious discussion with my GYN and my history of my "female problems" he sent me to a specialist to have a consultation for a hysterectomy which I had wanted since my late 20's.
In the meantime, while waiting for my surgery date, I was at the mercy of my bladder...some days I would feel great and some days, more than others, the pain was excrutiating. I would go to work, thank god for flex schedules, and come home to curl up in a ball on my bed to relieve the pain I was feeling.
My hysterectomy was performed on Nov 1st 2007...the best thing that ever happened to me...or so I thought...
Two weeks post surgery, I again had symptoms of a UTI-back to the doctor's office to see what was going on. The tests came back saying I did have one so he put me on Pyridium Plus...symptoms went away...for a couple more weeks that is. At my last post-surgical follow up, we discussed going to see a Urologist to find out what was going on since everything else seemed to be normal considering my circumstances.
I took that referral and went to the Urology office as discussed and started a whole series of testing...again...uggh!!!
The first person I was scheduled to see was Patricia Szymanowski; a Nurse Practicioner who specialized in Overactive Bladder Syndrome...she put me thru URODYNAMICS - CYSTOMETROGRAM (measuring bladder capacity by filling it with water and measuring the pressure as water is instilled and expelled) and diagnosed me with OAB...that is until my appointment with my doctor, Dr Elan Salzhauer.
I had a cystoscopy and as soon as he could see in my bladder, the answer was there! The cystoscopy coupled with the history of urgency, frequency and pain made my diagnosis to be Interstitial Cystitis.
I was put on Elmiron, 3 times a day and Vesicare and told to modify my diet as certain foods and beverages may be irritating my bladder.
First treatment, April 2008...HYDRODISTENTION of the bladder (putting water into the bladder to stretch it) Four weeks post hydro, I had my follow-up with Dr Salzhauer and told him I had been feeling great, as if I was virtually symptom free...He was estatic!
Well, I had about 2 months of relief from this.
For future appointments Dr Salzhauer set me up with Gina Brothers R.N. N.P who specializes in Interstitial Cystitis treatments. At first we kept with the treatment of the Elmiron and monitered my diet. When symptoms started worstening and the flairs became more frequent, she decided to send me for physical therapy for Pelvic Floor Pain.
At first I was a little apprehensive about having physical therapy for my pelvic muscles, but my therapist, Jeanine was wonderful. She has treated many a patient with pelvic floor pain and did everything possible to make me feel comfortable. With time, my pelvic muscles loosened up and helped when I was in a flair.
She also decided to get me a Tens Unit to use as much as needed to also help when I was in a flair-I love my tens unit!
This past November my flairs seemed to be getting worse so Gina and I decided it was time to do the Bladder Installations. It's an interesting mix of medications: Gentamicin, Heparin, Kenalog, Lidocaine, and Sodium Bicarbonate that are injected into the bladder thru a catheter. She told me they call her "The Mad Scientist" when she mixes the "cocktail" up for her patients.
I started my first "cocktail" one week before Christmas. Gina supervised 2 of the nurses who were going to administer the installations for my treatment. It was a bit comical for the first one, I was a bit tense since Gina told me that the Lidocaine may sting going in, so the "cocktail" wasn't going in very easily, and it turned out, it didn't even sting going in!
I had to sit for 40 minutes after to make sure I could void after otherwise they would have to insert the catheter again to empty my bladder for me.
On my way home that day, I started feeling the stinging and thought I was going to wet my pants on my 5 minute drive home-but I made it home and dealt with the pain for most of the day-not thinking that I could have taken my Pyridium to lessen the pain instead of waiting until bedtime to take my Lortab. Which by the way I didn't even think to start taking until treatment #4 when I had a lot of pain and frequency.
After my first day of treatment I noticed that my symptoms were rarely there and I did indeed start feeling better, but wasn't going to test it just yet.
Treatment #2 I said was going to be the official test.
It was Dec 23 and I was looking forward to going out on Christmas Eve with friends and family and be able to have a few drinks without having to run to the restroom every hour...if I could accomplish that, to me the treatment was already a success! Usually if I decide to have an alcoholic beverage (which is on the no-no list for the IC Diet) I end up in the bathroom at least every hour and am up 2-3 times in the night.
Well, I did behave myself, I only had 2 drinks and was not at all constantly in the bathroom and only was up once in the night-to me...Success!
So today I am glad to say I had my last of my 6 bladder installation treatments. In a way it's sad, I'm going to miss my weekly visits with the nurses at my Urology office, they are the nicest nurses that I've ever had to work with. Their compassion and concern for my treatment was heart warming.
I hope that when I go back to follow-up with Gina in April, I have nothing but good news for her.
I know that my journey isn't over, it's just beginning :)
