An Understanding Heart Found in a Doctors Face~ Part 4 of my IC Story~

                                     

     When you’re going through a tough time, and you feel alone, there is nothing more comforting than having someone in your corner that really cares and take the time to understand your pain and where you’re coming from. When you suffer with IC, you have a lot of bad days. When you find a caring doctor and a team who wants to help you get answers and have such compassion in the way they talk to you, then it’s a GOOD DAY!

    My doctors at Mass General gynecology department referred me to Dr. Allison Bailey.I can tell you she was a Godsend from the moment I walked into her office. I could tell right away she loved what she did and she cared about her patients and the pain they endured, and to a IC patient that means everything. When I first walked into her office the first thing I did was start to cry, because for the first time, I felt like I was believed and that gave me strength I thought I had lost along this journey. Her whole demeanor was so kind and gentle, even her eyes. Her eyes gave me Hope; I know all you IC family out there know what im talking about when you find that right doctor after so many wrong ones.

    I talked and she listened and I asked questions and she answered them all the best she could. Then she prepped me for a exam, not fun, but needed to be done, after the exam she said not only do you have IC but you have PFD pelvic floor disorder. She explained that those muscles form like a sling or hammock across the opening of a woman’s pelvis. She went on to say these muscles together with surrounding tissues keep all the pelvic organs in place, so they can function properly. And pfd occurs when those muscles and connective tissues are weak or injured.

       I told her my history of fibromatosis and how the surgeons had to remove a few ribs and muscles there on my left side of my abdomen. She then went on to tell me how the IC and PFD feed off of each other .IC is more about the bladder and the pfd is more about the muscles and surrounding tissues. It’s so important to raise awareness about IC, because like me at the time I had never heard of either of there and a lot of women are in the same shoes I was in.

     Dr,bailey knew from all her years of experience how horrific this disease is. So had me make another appointment and a few weeks later I was back in there and met a physical therapist that specializes in treating PFD. Her name was Julie and she too was a godsend. They both agreed I had posture issues too. They think it had to do with the surgeries’ I had in the past. Julie told me about 70% of IC patients have PFD too. I was blown away by that. Julie explained to me that pfd was a tightening, spaseming or weakening of the pelvic muscles. She went on to say when they coexist with each other they make each other worse.

    I then was told since my ic went misdiagnosed for so long, it was going to be a very long battle, I was afraid, but they reassure me that they would do all they could to help. When those muscles tighten they put pressure on the bladder and then cause frequency and urgency and pain. They have a lot of similarities, so you can see whey its hard to tell them apart at first. I was relieved, but felt overwhelmed all at the same time. I knew I was in good hands and I squeezed dons hand and he looked at me and gave me that smile  and I knew right then what it meant he was in this fight with me for the long run, I never doubted that. They told me there are many overlapping conditions that can come with IC. Yet most doctors treat each condition separately.

   This can be good and bad. Is the way I see it. If you treat them separately you then find out what each disease has for symptoms, find the cause if there is one, change lifestyle and find what course of action to take. So no rock goes unturned. But this could also have adverse affects because one treatment could irritate or flare another disorder. There is no easy answer really. Its not a easy road, that’s why we have each other though. And why its so important to trust your doctor, build that relationship. And be open and honest with how you feel, don’t hold anything back. If we don’t speak, how can they help us? Yes doctors have the education, but that doesn’t mean they know everything, WE know our bodies BEST… don’t forget that. Don’t let any doctor tell you how you should feel. Its our PAIN, our bodies. If any doctor says its in your head, turn around and walk out that door, and don’t give them a second look. SPEAK until you’re HEARD!!!!! That’s what I did and finally got heard. It will take time, but each step is one step closer from where you were yesterday.

    I hope this is opening your eyes to a better understanding, I hope you feel like your connecting to me on some level. I feel your pain believe with all my heart those who suffer with IC are some of the strongest, most influential people I know, let’s show the world WHAT were MADE OF….I love you all and that’s why I’m doing this blog, to help you ride out the bumps on this hard, long journey. Remember what the world may look at as small victories are our biggest accomplishments.

   So I met Julie in her office the following week, to start internal physical therapy. And dr bailey wanted me to start injections into my muscles. I won’t go into details, but let’s just say those injections into my muscles into my back did not work at all I was disappointed, but she said we won’t give up. She prescribed a muscle relaxer and that was a godsend to me. The scary thing about IC is you never know when another symptom will surface. This blog is real and it’s raw, but I don’t want to sugar coat reality. What breaks my heart is when family or friends back away from us as if we are a plaque, im thankful I have very supportive family, but not everyone does, lets help them understand. This blog isn’t just for the sufferer, but for those in the lives of those who suffer to help them understand on a deeper level.

   I started going for PT 2 times a week. It was very hard to adjust to the treatment. I would be very sore for a few days afterwards. She always encouraged me each step of the way. It was a long journey, a lot longer than normal because mine had gone misdiagnosed for so long. She had to teach my muscles to relax, but they were so tight. I got very frustrated at first seeing very little results, then after awhile I had to have internal injections and then internal pt the same day and that was very tough, I also had to fight my insurance company a lot of times because they kept stopping my treatments and id go for months without treatments, and then it was one step forward 3 steps back. It also was about training my bladder to not feel like I always had to use the bathroom. And what’s tough is with IC we can get dehydrated very easily so we have to drink a lot, but that can be tough with IC if were always feeling the need to use the bathroom. lot of those appointments I would just cry, because those muscles were so tight, but I knew she was touching the right ones.

   Later when I saw dr bailey again she looked over the notes from Julie and referred me to dr elkdary and when I saw her, she scheduled a cystoscopy under anesthesia was told my bladder was very red and inflamed that one was in 2010, I just had another one in September of 2013 and I had my new uro do it and he told me my bladder looks worse than before and that i probably now have hunners ulcers.