Sudden Fear of Physical Therapy (Part 1)

Last week when I saw my urologist, I inquired about whether physical therapy might help with the pain that I couldn’t seem to get rid of. Bladder instillation’s, heating pads, ice packs-nothing was working. The doctor agreed to it and said physical therapy is good for both IC and pelvic floor spasms. As I think I experience both, I was elated to hear this. The nice lady at the front desk gave me a brochure about a physical therapist who specializes in women’s issues; specifically IC. I called last Monday and am scheduled for my first appointment tomorrow. In a weird way, I had been looking forward to going because I was really hoping a new/different method of care might really help.

The lady at the front desk had emailed me paperwork to fill out so that I won’t have to sit in the office an extra 15 min. The first time I even glanced at the paperwork was tonight. And this is when the fear set in. Here is just an excerpt from the consent form:

“Treatment may include, but not be limited to, the following: observation, palpation, use of vaginal weights, vaginal or rectal sensors for biofeedback and/or electrical stimulation, ultrasound, heat, cold, stretching and strengthening exercises, soft tissue and/or joint mobilization and educational instruction”

I expected to receive educational instruction as well as stretching and strengthening exercises….WTH ARE THOSE OTHER TORTURE DEVICES ABOUT? I’ve lifted weights before but never that kind. Rectal sensor? Believe me, my ass is big enough-no sensor needed, thank you very much. I fear this physical therapist is going to see more of my bits than my gyno and my boyfriend have combined this year and I’m really not ok with that.

So help me out, IC community-or anyone really, who has had physical therapy using any of the above torture devices-do they help? And most importantly, do they hurt? I don’t want to come across as a prudish lightweight here but…well that’s exactly what I am! If you’ve had experiences with this line of physical therapy, please let me know if it was worth it and if it’s as creepy as it sounds.

As a side note, I’d like to apologize for the words in blue. I pushed the wrong button and couldn’t change it back. I’m sure you know what the definition of an ice pack or heat pack is and don’t need wikipedia to enlighten you,

Hurry Up and Wait

I had my follow up appointment today. I was a bit nervous as to what the doctor was going to recommend since the bladder installations weren’t as successful as we had hoped.

I was also nervous due to a daycare situation that put me in the office five minutes late. Five minutes is late, yes, but not really that unusual nor extreme. When I arrived, I checked in with my least favorite person in the office. She took my last name and then said, “You’re a bit late, let me see if the doctor will still see you,”. Umm…what? She picked up the phone and spoke to the nurse. When she hung up she said, “The doctor will see you, but there are four people ahead of you and it’s going to be an hour wait.” I have really been making an effort to be nice to people lately but I will admit that for all the niceties I’ve put out there the past few weeks, I took them all back at that moment, “I’m sorry? Can you repeat that, please?” I asked. The fool must not have seen the look of death I was penetrating her skull with or she wouldn’t have repeated herself. “So, I’m getting pushed to the end of the line because I was five minutes late for an appointment? Do you realize that on the day of my first appointment I waited over an hour to see the doctor? I’ve also waited over 15 minute’s on other occasions as well, and yet, due to a situation beyond my control, I’m now being pushed to the end of the line for being five minutes late?”  I may or may not have been yelling for the whole waiting room to hear at this point. I have no shame. “We’ve had several people we’ve had to fit in today and you’re the last appointment,” she said. I just shook my head and sat down. An hour and several trips to the bathroom later I was taken to the exam room. Thirty minutes after that I was still waiting. I really like Dr. L and his nurse but sitting there getting more and more angry as the minutes ticked by, I was contemplating getting my hefty co-pay back and seeking help elsewhere. I decided to talk to the nurse before making any rash decisions and plus, I wanted to whine to someone. We had a loud conversation about the wait time outside the patients door where the doctor was. Well, okay, to honest, I was the loud one, she was nothing but understanding and accommodating. Don’t you just hate it when people kill you with kindness when you’re looking for a fight? She won because I found myself back inside the exam room and waited another five minutes or so before the doctor came in, calm but apologetic for the wait.

I discussed with Dr. L how I have had a few really good days but not enough to consider the bladder installations a success. I also told him that it seems I’m worse on Saturday and Sunday’s, the two days leading up to the next installation, He gave me two choices: I can learn how to put a catheter in at home and give myself the treatments twice a week for an undetermined amount of time or he can do a bladder hydrodistention and cystoscopy to look for Hunner’s Ulcer’s. With the latter, I would be in guaranteed pain for about two weeks following the procedure but eighty percent of patients are reported to notice a big difference after that time period. I don’t want to have to play doctor every  few days and do my own installations on an ongoing basis so I chose the hydrodistention, I know there aren’t any guarantee’s but I’m hoping to fall in the eighty percent that are success cases. I read in ‘The Interstitial Cystitis Survival Guide’ that the effects of this procedure may only last three months Of course I’m rooting for longer but…it’s been a long time since I’ve felt good for a week, much less a month and the possibility of three months makes it worth it for me to try. Dr. L also had his nurse show me how to insert the catheter into my urethra so in the future I could do the bladder installations at home, should I get a Flare Up. So, so glad I left my ten-year old son in the waiting room. She was showing me how to insert the catheter and medication while balancing a mirror so I could see my vagina. Although I’m familiar with my vagina, I’d never seen it reflected back at me like that, full stop. Add in the view of my Stay Puff Marshmallow Man thighs and the view of the underside of my food baby and I was horrified. I tried to listen, I really did but I really just wanted her to put the damn mirror down so I could get dressed. Whatever that nurse is being paid, I’m sure it’s not enough.

After that fun, Dr. L came in and told me that he’d kept me so late that his surgery scheduler had gone home for the night. He then apologized again for the wait. I explained to him that the reason I was so irritated was because I felt that I was getting the shaft for being five minutes late when he was late by an hour and a half. I told him that had his office called me to let me know that he was that far behind I would have felt like I had a choice to either come in later or reschedule, He agreed with me and said he’d talk to the office manager about the rude lady at the front desk as well as advising people ahead of time about the wait so they could reschedule if needed. Round trip I was gone three hours for an appointment that I should have been to and back in an hour. I should charge them for my time.

Uphill Bladder…I Mean Battle

Hi, my name is Renae and I have Interstitial Cystitis (IC) (Hi Renae!)

I began this blog in July, intending to journal everyday of my recovery. After 5 years of suffering I finally had a diagnosis, an actual diagnosis that made sense! My gynecologist who diagnosed me started me on Elmiron. I was sure that I would make a speedy recovery with possibly a Flare Up here and there. That was mistake #1.Elmiron can take 3-6 months to have noticeable results. Mistake #2 was thinking Elmiron was the only medication and treatment I was going to need. I  know everyone is different and respond’s differently to medication and treatment. If, in your situation Elmiron is all it takes to make your bladder happy than I am more than happy for you. For me, this isn’t the case. By the way, Elmiron can be expensive, even with insurance. I went to the Elmiron website and downloaded a coupon that saved me alot of money,

In August, I went to see a Urologist who specializes in IC. I don’t think I could have made an appointment with a nicer or wiser doctor than Dr. L. He asked important questions and actually listened to my answers. He gave several suggestions for treatment. The suggestions ran the gammet from taking a prescription anti-histamine at night called hydrooxyzine, which he highly recommended to removing the bladder, which he was dead set against (I was very glad of the latter as I’d like to keep all of my remaining innards intact, thank you very much). I started taking the anti-histamine pills at night that work to reduce the mast cells that form in my bladder and about a week later I started Bladder Installations. A Bladder Installation is when a solution is pushed into the bladder through a catheter. The cocktail that was used for me included sodium bicarbonate, lidocaine and Elmiron. Afterwards, I have to hold the cocktail solution in my bladder for as long as I can. Are these treatments as gross and demoralizing as they sound? Actually, no. It’s a 10 minute process in the office that is performed by the nurse. It takes me longer to drive to the dr’s office than it does for treatment. I finished my final treatment of six this past Monday. Am I miraculously recovered? No. I am, as a matter of fact, in pain right now. I have had a few days here and there where I feel great though. I go for a follow-up visit with Dr. L tomorrow. I’ll admit that I’m sort of afraid of what the next course of action will be. I don’t suffer from latrophobia but I’m sure the bladder installations were the least invasive measures I recall him talking about. I remember removing the bladder as not only being the most invasive but the one treatment that I had to ask him to stop talking about for a moment while I put my head between my legs so I wouldn’t pass out. Normally, that type of reaction only happens when I’m in a room where childbirth is being discussed. That dizziness/I’m going to pass out if you don’t shut up feeling began in the sixth grade during sex ed while the teacher explained the birthing process and has stayed with me through the years. Seriously, I’m surprised I even chose to have a baby myself. Anyway, tomorrow’s appointment is making me a bit anxious.

Another thing worth mentioning at this point is my diet. When I was diagnosed by my gynecologist in July, she handed me a print out with pictures of food and what to avoid. I’d say after further exploration, that the print out must have been a rough draft. I’m already gluten-free and have been for over two years. According to the print out I received from Dr C., I would only have to eliminate a few more things like tomatoes, soda and chocolate. I’ve never been a huge fan of tomatoes, but come on, chocolate AND soda are no-no’s too? Of all the things I’ve given up over the past 2-3 years, I miss soda the most. In fact, before I found out that I had IC and I was having a painful day, I would often stop at the corner store and get a soda and M&M’s as a comfort food. It turns out, what I was using to comfort myself was actually hurting me more. This disease with all of its quirks and what-works-for-one-person-may-or-may-not-work-for-another baffles me at times. I know several people who are gluten-free or who have family members that are so they are at least familiar with what is gluten-free and what is not. Other people choose to go on what I like to call a “I’m gluten-free because the last fad diet I was on didn’t work for me” diet. I am gluten-free out of necessity, they are gluten-free out of choice. The one good thing that has come from their choice is that Celiac’s, Crohn’s Disease,and gluten intolerance has come into the spotlight and there are several more gluten-free items in both grocery stores and at restaurants than there were even two years ago when I went gluten-free. Yay! This has made shopping and going out to eat a bit easier. However, I have yet to see one item in the grocery store marked “IC Friendly” just as I have yet to meet another person who has IC, even though statistics are that over a million people have IC. I bought a cookbook called “A Taste of the Good Life” by Bev Laumann from amazon. I’ve decided that until I go into remission, which i have to believe that I someday will, I’m only cooking recipes from this cookbook. Going out to eat is expensive for me, not only financially but physically. Most every time I go out to eat, I’m in pain within the next twelve hours. I’m hoping that by using this cookbook for a month I will train my mind to remember the ingredients so that when and if I go out to eat again, I can do so without harming my bladder.

So I’ve mentioned Elmiron, which I take an hour before every meal along with generic Librax for my IBS. I’ve also mentioned that I take a prescription antihistamine called hydroxyzine before bedtime. Have I mentioned the wonderful medication called Uribel? Come closer, let me tell you about it. It’s the little blue pill for IC. Yes, it’s a pill that enables me to have a normal sex life. One of those blue pills taken about 10 minutes before the party begins and I’m feeling no pain. Really?  you ask. Yes, really. I was at the point where I felt sex was a punishment of sorts. I have no complaints about my partner, the pain I was feeling during and after all had to do with my body. Every time I had sex, my vagina would have muscle spasms that lasted a really, really long time. Okay, you can back up now. The only side effect from Uribel that I’ve experienced is that it tints my urine blue the next day. This has caused me to refer to the pill as “The Smurfer”. If that’s the only side effect I suffer from the pill in okay with it. Color me blue 🙂