This Article is About
chronic pelvic pain
bladder infection
car accident
nightmare
doctors
journey
Chronic Pelvic Pain, A Medical Mystery?
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When a car accident in 2007 left me with chronic pelvic pain, I figured it was just something that was nothing more than a pain I would have to live with until it healed. In no way did I think that I would be a medical mystery to more than 15 doctors that in over 4 years they have still not come up with the reason or cause of the pain, let alone not be able to fix the problem.

It took about 8 months for me to realize that the pain was not going to go away, so that was when the journey of trying to find the reason behind it began. I had no insurance at the time, so was reluctant to go see a doctor, but I did. I went in and told the doctor I thought I had a bladder infection, but the test came back negative for that, so I went home and decided that I should get some insurance before I did anything else. I got the cheapest plan I could get, as I didn't think that it would be anything major wrong, but figured that I might have to have an ultrasound or MRI or a Cat scan, and didn't really want to pay for those things completely, so got some insurance that had a max out of pocket of $11,000.

When I went back to the doctor I was glad I had insurance, because I was sent for an ultrasound first. It didn't show too much, other than a possible cyst on my ovary. So I was told to wait a month and see if it went away, which is not unusual, as most cysts do go away on their own. A month went by and then I had another ultrasound, and it appeared to show the cyst still there and possibly a bit of endometreosis. So I then had to have a catscan. Wow, was I glad I gotten the insurance now! But, that was just the beginning of a nightmare that is still haunting me.

After the cat scan, showing the same thing the ultrasound did, they decided the best thing to do would be to go to a gynocologist and have the ovary removed. I was over 40 and didn't plan to have any children, so it wasn't going to be a problem for me. So in 2008, I had the ovary removed. I figured that I would finally be free of pain after over a year of having it. What I didn't expect was a phone call from the doctor 2 days after the surgery. The news he had for me was devastating. He told me that the pathologist had called him with some bad news, something that he had never even heard of, and that the ovary they removed had granulosa cell, a rare form of ovarian cancer that only 2 percent of ovarian cancers were. He said that it would be best if I saw someone other than him about doing what was necessary to take care of seeing if there was more cancer or if it was contained just in that ovary, or just exactly what would be the next step.

So I went to a doctor in Iowa City at the University of Iowa Hospital. He had seen granulosa before and was familiar with it. He said the best option to me would be to have a radical hysterectomy, so that if the cancer had spread to other organs in the pelvic region, at least that part would be removed and would not spread further. He also explained to me about the chemotherapy that I would have to do after I had healed from the hysterectomy surgery. This cancer is so rare that many doctors have different views about what treatments to use, but his was going to be a chemo that was given to males with testicular cancer. Wow, I'll leave the emotional parts out, but I'm sure anyone who has experienced having had cancer or known someone who has had it understands that part.

After the hysterectomy, I had to wait for a few weeks to hear exactly how far the cancer had spread. In the meantime, it was great to have the feeling of no chronic pelvic pain. But I was pretty much confined to the couch, not getting up alot due to recovering from the hysterectomy. Finally when I started getting up and around more often, trying to walk and do a few things around the house, that feeling started returning. My husband was sure it was just a "phantom" pain, as everything was gone that would cause the pain.

In the meantime, I got great news that the cancer had not spread at all and was contained only in the ovary, so I would not even have to go through the chemo! What a relief that was to hear! But the bad news was the pain had returned almost back to what it was before the surgery. So it was back to the drawing board for doctors. How could it be that the pelvic pain returned with everything removed? So they decided to send me to a uro-gynocologist.

I spent about 2 months going to her and she tried many different things to try and figure out the pain. I had 2 pudendal nerve shots, which did not work and were nothing more than very painful! She also tried 3 or 4 different medications, none that even helped with the pain. The medications were basically for frequent urination such as Vesicare. Since that was one of the symptoms, she thought maybe those would help. Finally she had tried everything she could think to help, but was unable to help.

I then was told to try a chiropractor. I went to him for about 9 visits, and although I was told this was one of the best around where I lived, he was unable to provide any relief either. The next place was onto a therapist who suggested some pelvic floor exercises, but they just seemed to worsen the pain and did nothing to help.

For about 6 months, I gave up trying to get help. About 2 months ago, I told the doctor that after the accident I had an x-ray on my back, but none of my neck. And that the first thing I had told the doctor that saw me after the accident was that when I brushed my teeth that evening, I felt a tingling sensation or vibration that ran down the front of my body and ended around the pelvic area. So she agreed that maybe this was something that was being caused by something in my neck or spine.

So I went to have a catscan and lo and behold the radiologist said he could see something that didn't look right, but it was blocked to a point, so the best thing to do was have an MRI to get a closer look at what he was seeing. Of course I was getting excited about having the MRI because I had hope that it would finally show whatever it was the radiologist had seen and they would be able to fix it and I would finally get to be pain free.

The MRI did show myalomalacia between discs C5 and C6. Cervical myalomalacia is a condition resulting from damage to the spinal cord or nerves, and softening of the spinal cord. Hello?! The car accident right? My doctor and I were pretty excited to find that this was what the MRI revealed. She even found an article on a website called uptodate, which is a site that true doctors write about experiences with different conditions. The article she found showed that 20 percent of those with myalmalacia or cervical spondylotic myelopathy experience bladder dysfunction, urinary frequency or retention. Exactly some of the things I have complained about for 4 years.

So it was off to the neurologist. I had so much hope when I was getting ready to see him that I wished I could go the next day! I just knew that finally after 4 years of misery, they had found the cause of the pain and that I was going to be fixed once and for all!

Unfortunately, the visit was the most frustrating doctor visit I have ever experienced in my lifetime. He was so frustrated that a doctor would send me to him that he flat refused to read the article that my doctor had given me to take to him with the information about the relationship of bladder problems and myelopathy. He did a few tests to see whether or not I could do this or that, but after about 10 minutes his answer was this. If I was clumsy or couldn't tie my shoes, he would suggest surgery. But if my main complaint was pelvic pain, I should go see a gynocologist.

So there you have it. I am a medical mystery to all doctors I have seen in the past 4 years. None of them can come up with an answer as to why I have to take pain pills every day, all day unless I am sleeping. No doctor can figure out why someone has complained for 4 years of chronic and miserable pelvic pain after a car accident. No neurologist believes that myalomalacia can be a cause of pelvic pain. My doctor called another neurologist nearby and he was willing to see me, but did not think that fixing the neck would cure the chronic pain.

The chronic pain that I live with everyday continues to be a mystery to anyone that hears about it. My doctor is an awesome person and tries to do what she can to find answers. She even agreed with me when I told her that I was thinking of contacting The Doctors television show. I don't want to let everyone in the world know the miseries that I live with everyday as they can embarrassing to share, but after 4 years, I would do anything to find a way to live even a day without pain.

There are many people that have disabilities and conditions that are not of their making. The biggest share of them though are something that they have to live with because their is nothing that doctors can do to help or there is no cure for what they have been diagnosed with. I find it hard to believe that in this year of 2011 there is no cure or no doctor that has an answer for someone with chronic pelvic pain, but until I find that doctor or person that has experienced or found the answer for the situation I have been put in by simply having a car accident on a winter day in Iowa, I will keep looking for answers.

If you have an answer, you can't imagine how thrilled I would be for you to share it with the world by responding to the article. I am sure that I am not alone living with chronic pelvic pain and the other medical problems that come with it. You might just make many people in the world happy to hear your response and give them a chance at a world free of pain as well.


Street Talk

chronic pelvic pain is actually a neuromuscular tension disorder brought on my cataclysmic events and heavy, heavy doses of stress. your body becomes conditioned to these acute, intense levels of anxiety (as if they are normal) and then you suffer symptoms comparable to a migraine headache in your pelvis. when this happens, you are left with all sorts of symptoms that mimic very serious dysfunction and disorders and they ARE ALL commonly misdiagnosed. ----------------> Dr. David Wise and Tim Sawyer can help you. google pelvic pain help and you will find the relief you are looking for.

Reply
  about 1 decade ago
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