Endo Journey: Angela

The following "Endo Journey" post comes from the lovely Angela Kawakami! Angela has been living and learning to cope with Endometriosis for more than two decades. Please read on to discover Angela's emotional struggle:

During my endometriosis journey of the last 22 years, I have seen more than 40 doctors and specialists, including three naturopaths.  I have come to realize that I have to be an advocate for my own health. If I don’t agree with the doctor’s suggestion or diagnosis, I get a second or third opinion.  Here is my experience with medical and naturopathic physicians.

Early Menstrual Pain

I began seeing doctors when I was 13 years old. I always went alone to the appointments. I guess I saw too many different doctors for anyone to come with me and support me. They thought I was just a hypochondriac.

For years, test after test showed nothing but mild scoliosis and thoracic outlet syndrome; they told me it was all in my head and that I should accept it and take antidepressants.  I had doctors talk to me like I was an idiot and prescribe medications for conditions I clearly did not have. One doctor told me that he couldn’t be my doctor anymore because I cried too much. Several doctors embarrassed me in front of other patients because they were frustrated that my body was in so much pain and couldn’t figure out why.  Twenty–two years later, I was diagnosed with stage IV endometriosis, proof that the pain was real.

Alternative Care

 

Frustrated with medical doctors, I went to a naturopath doctor that was hours away. I just wanted to see if she could find something the other doctors could not.  She asked me to lie down on my back and then she walked around me, touched my arms, looked into my eyes. The rest I really can’t remember, it was long ago.  The interesting thing was, without any tests, she said I had an overabundance of yeast and that my stomach was out of place. Then she moved it back into place! I swear it was so strange because for the first time I felt that I could breathe. It no longer felt as if someone was sitting on top of my chest. She told me to do a yeast free diet along with eating raw pumpkin seeds and some other items as well. It was an interesting visit.  Later I found out that my stomach had been out of place.  Scar tissue from the endometriosis pulled it out of place.

In 2009 I went to see a dietician. After a long interview, she said I had hypoglycemia, bone loss, and adrenal fatigue. This again is something that I would remember later on, as I put the pieces of my illness together. Because I was on Lupron, I have osteoporosis in my jaw. It is possible that the Lupron and the suppression of all the estrogens have caused serious bone loss elsewhere in my body.  No one had considered sending me to get a recent bone scan. My last one was 12 years ago, so at my next GP appointment I will be asking for one.

In 2011, I went to another naturopath. She said I had food intolerances to wheat, dairy and spelt and that my body was not absorbing any nutrients, minerals or vitamins. She put me on a load of supplements to get my body going and for a time, it was working.  While on the diet I had more energy, I was more alert and over all I felt great. Then I was put on Amitriptyline for nerve pain from the endometriosis and everything fell apart.  The Amitriptyline made me feel groggy, crave junk food and I didn’t want to do anything. It was almost like the medication was making me depressed. I was on 70mg a night. The one good thing it did was help me sleep, something I have needed for years.

Back to a Medical Doctor

 

In 2012, I went to one of the best doctors of Canada.  He pulled all of my files from all the doctors I had seen over the years.  His office sent me a copy of everything.  This was the first time I had access to all of my medical records.  At least half the information in my file was wrong.  (Ladies request your medical files!) Much of the information was new – tests that had not been ordered but that were in my file anyway, notes to disregard anything that anyone other than a medical doctor had told me. From these files, I learned that I must take all of my files with me and make notes. Otherwise, there is no guarantee the  information will be accurate. If it hadn’t been for my persistence to research and find one of the best doctors for endometriosis, I wouldn’t be writing this article as we speak.

All in all, the Naturopathic doctors made me feel better and talked to me like a human being, while many of the medical doctors treated me like a piece of garbage, humiliated me and made me feel like I was crazy. I wasn’t crazy. The five hours of surgery to remove and repair the endometriosis damaged organs proved the pain was real.  It had a cause.

Where I Stand Now

 

After years of suffering with endometriosis and being ignored and humiliated by medical doctors, it is difficult for me to listen to their advice. The errors and comments in my medical files showed a blatant disregard for my health. Many of my doctors thought I was crazy or faking it. I feel that I have wasted most of my life in and out of doctors’ offices. It was only through my persistence that I found the one doctor who was able to diagnose my endometriosis.

For now, I have decided to still take my birth control pills for my endometriosis – they seem to work.  At least, the pills even out my moods. Eventually, I would like to come off of the pill and my other medications. As for everything else, it’s all natural and clean eating for me. I am also learning how to manage stress.  Unless I am dying or I feel it’s 100% needed, I will never see a doctor again.

                                          

Thank you for being brave enough to share your Endo story, Angela! Please make sure to stop by Hormone's Matter to read more on Angela's life with Endo!

Have you suffered from an eating disorder? How has Endo affected your life? If you would like to share your story, please leave a comment below!

xo Heather