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CPP just diagnosed. Long story, beware

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  • CPP just diagnosed. Long story, beware

    Note: I wrote this just to share my experience. Would love comments, feedback, advice, etc. Even if no one responds, just wanted to get this out. Thanks so much for reading, especially if you get all the way through!

    After one of the longest days of my life, I need to report. Here goes. My mom has chronic pelvic pain. I have IC (obviously). Although they are different--my mom has no bladder problems--I learned today that I, too, suffer from chronic pelvic pain which is CAUSED by my IC--which is actually CAUSED by brain and spinal cord injuries. Dr. John Slocumb, the lifesaver of a doctor who has treated my mom for over 10 years, was able to make a special appointment just for me. He is such a renowned doc that people come from all over the world to see him, and half the year he is traveling the world to see patients who can't get to him. He has written in medical journals for years and his expertise is of the top on this planet. He writes:

    A collection of neurological signs and symptoms, entitled abdominal pelvic pain syndrome, is identified as the most common cause of chronic pelvic pain. Techniques to identify abdominal wall, vaginal, and sacral components are described, with painful tissues commonly limited to a single dermatomic area. Superficial local areas of hyperpathia (trigger points) appeared not only to cause the pelvic pain but also to be responsive to local anesthetics for a duration in excess of the presence of the medication. Successful responses were noted in 89.3% of 131 patients, with 92.6% requiring five or fewer treatments and 68.2% followed up for longer than 6 months. The diagnosis of the abdominal pelvic pain syndrome is an important component in avoiding unnecessary operation in patients with pelvic pain.

    He did an exam on me to determine this. He then gave me about 15-20 shots in my abdomen to calm the area and relieve the pain. If this works, I can go there every month or so to continue the injections. Another contributing factor is my abnormal heavy menstrual cycle. This causes so much strain on my body that my entire pelvic area is out of whack for about 50% of each month. His solution is to stop my period altogether. I will get a shot every month (that each cost $3000) that will put my body into menopause mode. My ovaries will completely dry up and there will be no activity there whatsoever. The only time he wants me to have a period is, of course, when I'm ready to have children. That, I found, could be a problem for me as well. I will have to cross that bridge when I get to it. I will be taking hormones to make up for the ones I won't have anymore, so that I don't have to experience all the side effects of an early menopause. The bloating I've experienced, though I look about 6 months pregnant, should subside as we conquer the pelvic pain. Something to do with the capillaries in my abdomen filling up with water, and that's why I have this huge stomach. The pain has nowhere to go and somehow breaks through, causing liquid build-up in my abdomen. Nearly all women with pelvic pain experience the bloating, so while I'm not alone, it doesn't make me feel better. Another treatment that has helped many women is to actually install a computerized unit into the abdomen to numb the pain. My mom has had many, and they are serious, serious, invasive surguries. They have not helped her, but the doctor seems to have hope for me. He doesn't want to make any decisions like that yet though. He wants to see how I improve with the injections and the birth control. It is also possible that I have endometriosis, and if so, this birth control can be very helpful.

    What does make me feel better is that I have an answer. I cried for 3 hours straight (the time I was in the doctor's office) out of relief, and also out of frustration and anger. The doctor believes the neurological damage comes mostly from chicken pox, so I can conclude that all the problems I'm having now are due to that. Why do just some people suffer like this once it has gone away? The answer is unknown. I got them when I was so young that I don't even remember. But for some reason that hasn't been learned yet, it can manifest itself into all the problems I have IC and pelic pain-wise, which I've learned today, are directly connected.

    The reason it's all coming to a head right now is stress-related, mostly. It is no doubt that I have been under an insane amount of stress for nearly a year, and its effects are so undermined by our society. I had no idea that it could bring about my problem so severely. But this was going to happen sooner or later, but it makes sense that it is happening now.

    I am scared, relieved, worried, anxious, thankful, and a million other adjectives. My life will not be the same. So much has changed for me, and this is a big blow. I've seen what my mom has gone through and I prayed that would never happen to me. Though it's not hereditary, I managed to end up with a similar problem. I should be out of commission for quite some time while I try to get back on my feet. Literally. 20 needles in the abdomen is not an exciting experience. I've seen a lot of blood in my time, I get my first bc injection on Monday. As for now, I am still at 6 months pregnant status and can barely sit at my desk chair comfortably. I am supposed to rest and see what happens I don't know what I would have done without this doctor. He is truly like no one I have ever met in my entire life.
    Allison, 25, living with IC since 2002. Add me on Facebook! (search Allison Jacobs)

    Conditions: (known)
    IC, Chronic Pelvic Pain, Neuropathy, Adenomyosis (hysterectomy to "cure" this), Vulvadynia

    Elmiron--200 mg twice daily
    Cymbalta--90 mg once daily
    Various pain meds, rotating

    Spinal Nerve Stimulator implanted 5/10, mostly unsuccessful
    Hysterectomy 9/09
    D&C and hysteroscopy 8/08, somewhat helpful
    Mirena IUD began 12/07, unsuccessful
    Lupron Depot 6/07-8/07, unsuccessful
    Hydrodistention 2004, 2007
    Physical therapy 2003-2006

    "Tomorrow is the most important thing in life. Comes into us at midnight very clean. It's perfect when it arrives and it puts itself in our hands. It hopes we've learned something from yesterday."
    John Wayne