I have been going from doctor to doctor for 23 years for my endometriosis. I have yet to find one that actually listens to me. Is it me or do doctors not listen to patients? Maybe they don’t believe us when we describe the pain of endometriosis. Maybe they don’t believe us when we break down and cry after years of misdiagnoses, endless medications that didn’t work or made things worse. Or maybe, our pain is just too real and because they know they cannot treat it, they back away and ignore it. I don’t know why so many doctors treat endo patients the way they do, but I know it’s never going to change if we keep suffering in silence. The pain is real and shouldn’t be ignored. That is why I share my experiences here on Hormones MatterTM and on other social media sites. If we don’t speak up, how will they ever understand how much we suffer?
My Experience with Doctors
My first doctor seemed like she was out of it and not interested in my pain. I didn’t feel that I could speak to her. I was young and so I just believed what she said and left it at that. I always thought she would tell me what I needed to do next to feel better. I went to see her about my horrible cramps. Immediately, she thought it was endometriosis and left it at that; no medications, no treatments, and no advice whatsoever. At 13 years old, I didn’t think twice and went on my merry way.
Soon, the pain was so bad that I found another doctor. I saw him for almost five years. He ordered tests, prescribed different antidepressants. Needless to say, the antidepressants did nothing for the pain of endometriosis. If it wasn’t blatantly clear that it was cancer or some other obvious disease, he had no clue what he was doing and he had no interest in diagnosing or treating my pain. He finally told me that I cried too much and that could no longer be his patient. I think he’d cry too if something were strangling his insides.
During my teen years and into my 20’s I must have seen over 15 doctors and specialists. I had a neurologist tell me to touch my nose and when I did, he said I was fine.
Probably one of my worst experiences with a doctor came three years after my daughter had been born. One day I called, because I was feeling flu like and nauseated every day. The secretary booked me that day even though they were busy. While I was in the waiting room, I could see the doctor having an argument with his assistant, I assumed for putting me in when he was full. When he called my name and while walking into the room in front of everyone, he said to me “What is so wrong with you that you had to bud in front of all of these fine people?” OMG I was so angry I told him I didn’t need this treatment and walked out and never went back to him again.
At this point, I had been suffering with untreated Stage IV Endometriosis for 13 years. I had seen multiple doctors who either ignored my pain or made me feel as though I was somehow imagining it. Frustrated, I finally started to do my own research. I found support groups online to help me with what questions to ask the doctors. I found yet another doctor and scheduled an appointment. He told me after reading my Ultrasound report that he was sure it was endometriosis and that he would book a surgery for it.
Talking to my friends online made all the difference in the world. They told me to ask questions like what to expect, what could make the surgery change from laparoscopy to open surgery etc.
Next time I went in to see this new doctor, the one who said my ultrasound showed endometriosis, I started the conversation with “The last time I was in you said I probably had endometriosis” I was about to finish my sentence when he got really angry at me. He said that he never said I had endometriosis. When I tried to ask more questions, he got mad and said I wasn’t ready for surgery and then cancelled the surgery and red flagged my file. I was so confused. Why was I not allowed to ask questions? It was my body that he was operating on. He had such a God complex. I walked out of his office.
No wonder people with long-term, undiagnosed medical conditions get depression. They are treated like crap, like hypochondriacs and as if we are wasting the doctor’s valuable time.
After 15 years of excruciating pain and being treated poorly by many doctors, I finally found a doctor to operate on my Stage IV Endometriosis. The surgery was a success. I thought that I would feel vindicated, but I didn’t. I was, and I am still, angry with how I was treated.
I have been talked down to by many doctors. They have made me feel really uncomfortable about myself. They made me think I was going crazy. I can’t even count of how many times I contemplated suicide because of the mental stress my health put on me, the fact that I had no one to understand what I was going through and not even a doctor who cared to listen. If they did, they would have known I had all the symptoms for endometriosis.
Even after all of this, every new doctor brings with him the risk for misdiagnosis and mistreatment. Read my story about developing Pelvic Inflammatory Disease, Post Endometriosis Surgery and the horror of getting that diagnosed appropriately. My present doctor now knows nothing about endometriosis, a disease that affects millions of women around the world. How does this young, female doctor NOT know?? I just go there now and tell her the tests I need done and what drugs I need or if I need to change them. She does nothing on her own.
Lessons Learned about Endometriosis
If I have learned anything through this ordeal it is too keep your own medical records, be an advocate for your own health and ask a lot of questions. If you want sympathy or empathy and a little understanding do not expect to get it from your medical doctor. Find an online community of women with a similar condition. That is where you will find the support you need to survive.