Is There Another IC Patient In My House?

Wednesday night I hosted my monthly meetup group for people with IC and chronic pain at my house. Last month one woman showed up, this month another one joined us as well. We dealt with the most important things first: food and getting comfortable. Once the food was layed out and our we were settled in a comfortable spot, sans shoes, we got started, It was an interesting triangle. The lady who was also at the last meeting has fibromyalgia. I have IC. The lady who I’ll call Jennifer, has both IC and fibromyalgia. I’m sure by the end of the night Jennifer was talked out after answering questions and discussing her conditions with each of us. The snacks were good and there was never a quiet moment. Now that’s what I call a good get-together!

Part of me wanted to cry with joy when I met Jennifer.There are reportedly millions of people with these disease yet until Wednesday night I’ve never met anyone who has it face to face. I’ve met several wonderful people who have IC through blogging but meeting this lady last night somehow made my condition more real to me. All three of us looked remarkably alike. Long lost relatives? Nope. We were just three women who look fine on the outside while suffering on the inside.

Jennifer has had many chronic overlapping conditions for years but was diagnosed with IC only three years ago. Since I have only been diagnosed since June, I had a lot of questions for her. She had a lot of answers. Some I agreed with and others that I found puzzling or questionable. When she left, I was talking to my boyfriend about her. Well, not about her  per se, but about different things that she said. She made me question whether or not the path of care I’ve chosen (certain doctors, physical therapists, medications) is the path I really should be taking. I slept on it and the conclusion I finally came to is this: there is no right or wrong path with IC. You find a doctor you communicate well with, a physical therapist that you trust, try out medications to see what works for your body, and pick and choose procedures after weighing the pros and the cons. What works for Jennifer may or may not work for me. She may not get along with my physical therapist but I may find that I really like her. As long as I’m progressing towards pain relief, I’m doing well.

As I mentioned earlier, Jennifer is much further along in her journey with IC than I am. She has tried different things and found what works for her-for now anyway. Jennifer is also what I’d call….new agey for lack of a better description. She reads books by Deepak Chopra and Andrew Weil and can repeat phrases from their books like they were her own. Do I want to read those books and repeat someone else’s mantras. No, I don’t. Is it wrong that Jennifer finds some sort of peace in doing this? No. But it’s not for me. I don’t need a health guru to bring me peace of heart and mind, all I need is God. I struggled for over 5 years to find a correct diagnosis. Thinking back to Wednesday night I realized something amazing about myself. I’m no longer a follower. Years ago, before I learned to be my own advocate, I would have taken the information Jennifer gave me as right without question because if she’s had the condition longer, surely she must know whats best right? Now I know that such thinking isn’t always correct. I can take what makes sense to me from her wealth of knowledge and use it for my own greater good. I can research the information that I have questions about and decide for my self if it’s something that will be good for me. Having to fight for doctors to take me seriously and continue with that battle to get a diagnosis that made sense to me has made me wiser, I believe.

It was good to talk with Jennifer. It was good to mentally note our similarities as well as our differences. More importantly, it was good to be in the same room with someone who knew exactly how I felt. I’ve never had that before. I’m hoping that the knowledge I glean from her, the knowledge that’s right for me, will be able to help me further my recovery. It was wonderful to be in a room with two other ladies and feel support and understanding. After this meeting, as with the last one, I felt refreshed and renewed. I felt hopeful.

 

Fear of Physical Therapy (Part 2)

I did it. I put aside my fears and went to the Physical Therapist today. I am very impressed with how much my PT talked with me beforehand about my symptoms and then told me what she guessed was the problem (later after examining me, her thoughts were proven to be correct). She had a plastic model and explained to me all I needed to know and more about the pelvic floor. I had no understanding of all of it’s functions and how large of an area it really covered.

When she did the internal examination she found several trigger points a.k.a painful areas on my pelvic floor. I can only explain the pain I felt being similar to the pain of air on an exposed tooth root. It’s going to take about 4 months of treatments twice a week but I think I’m finally headed in the right direction. I’m in alot of pain tonight that I didn’t expect as I felt pretty good when I went in there. Hopefully, this won’t be the case after each appointment. She did mention later possibly using vaginal weights but I hope it doesn’t come to that.

Special thanks to aspiegrrl, who was kind enough to share her experience with me and in turn, calm my nerves.

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,