By Barby Ingle, Columnist
When I first experienced the symptoms of endometriosis, all I could think of was get to the doctor so this will stop. That’s what I did as a kid. I got sick and my mom took me to the doctor and made me better.
I knew something was wrong inside of me because of the blood and abdominal pain. But with endometriosis, you don’t really know for sure until the doctor looks to see what is going on.
I had never heard of endometriosis at the time of my diagnosis. Nearly 20 years later, it is no longer a rare disease with more than 200,000 new cases in the U.S. every year. Endometriosis occurs when tissue that normally lines the inside of the uterus grows outside of it. The disease is treatable, but it does require a medical diagnosis to rule out other possible causes of the symptoms.
I went through lab tests and imaging, but they didn’t show much. I had endometriosis cysts that had ruptured for years before the symptoms became an issue for me chronically. None of the providers ever warned me what they could mean.
When they finally did the laparoscopy, the uterus tissue was found on my ovaries, fallopian tubes, abdomen walls, and intestines. Once they did this procedure, the endometriosis got worse instead of better.
I decided to go to a larger city to get care at a major university hospital. I was the youngest patient there to ever receive a full hysterectomy after rounds of hormones and Lupron shots that didn’t work.
1. Find the Right Doctor
What I learned from my experience with endometriosis was the importance of finding the right doctor. Each course of treatment is going to be different. Don’t always think the treatment you receive is all there is because that is all your doctor offered you.
You can make the choice to get the care you need. Don’t be afraid to do so. It’s your life.
2. Consider Multiple Treatment Options
Don’t just go for the pain medicines or invasive treatments first. If a treatment you try does not work for you, stop and ask for something else. If your doctor can’t provide it, move on and find one who can. It is important for you to communicate with your providers, family and caretakers to create a treatment plan.
3. Take Responsibility for Your Treatment
We can’t live in our doctors’ offices between appointments. The person who is most responsible for your care is you.
It is up to you to follow the treatment plan and realize that it may take multiple and concurrent treatments to get everything under control.
4. Get Organized and Ask for Help
You may lose people in your life that don’t understand, are not supporting you or causing negativity. That is okay. It can be lonely, but we can only ask for help. The person we are asking is not obligated to help. Find people who can help willingly.
You will need to get organized, so you know what help to ask for. You may also realize the help you require needs to be split up among different people. If one person is all you can rely on, it may cause them to burnout.
Reach out to resources in your community, such as churches, community centers, high school and college volunteer programs, your insurance company resources, etc. Don’t limit yourself when it comes to getting help, and be thankful and willing to receive any help you do get from others.
I have talked about the importance before of keeping a journal to track symptoms, treatments and for your personal well-being. Once you have some data that helps you recognize your pain triggers, you can set expectations and plan accordingly. Then when pain flares pop up, you will be better able to handle them, have less stress, and better daily living.
5. Be Your Own Advocate
Finally, advocate for yourself. You will come to learn your body better than anyone on earth. You will know what you need. If insurance denies an option, appeal it. If a medication is causing you terrible side effects, report it to MedWatch at the FDA.
Have the nerve to be heard and lose the fear of speaking up. The more you stand up for yourself and share your story, the better you and the chronic pain community will be.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
More information about Barby can be found at her website.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.