Living with Endometriosis

I am not telling my story so that people will feel sorry for me; I want them to understand, as best as they can, just how much pain we go through on a daily basis and how much our lives change because of endometriosis.

Let me start off by saying that you are not alone and that you will get through this. Over the years, I have done an extensive amount of research on pelvic pain and endometriosis (one of the many benefits of having a smartphone while sitting in waiting rooms) to better educate myself. I knew when I first started having pain there was something wrong; my body would not be hurting if everything was fine, right? It is not normal to be in pain at all, whether it be pelvic pain or any other type of pain. If you are in pain, it is time to get help.

Any woman can have endometriosis. A woman may have the disease and her sister may also have it, but not show any symptoms; it depends on the person. There are even celebrities who struggle with endometriosis. But you’d never know to look at them; those of us with endometriosis are forced to be the strongest women we can be, doing as much as possible to hide how much pain we are really in. Having been through so much physical pain, we can handle anything that comes our way! But because we do not want people to pity or feel sorry for us, we instead put on a happy face and smile through the pain. Perhaps you feel that if you were to talk about it with someone,they would brush it off, saying it is all in your head. I have had quite a few doctors tell me just that, and it is extremely upsetting every time it happens.

But I just kept pushing, seeking the answers I so desperately needed. And now, I am so thankful I had the willpower to do that.

Nobody wants to talk about female problems, but not talking about them does nothing to help anyone—and that is where I draw the line. I am going to share every aspect of my journey—the good, the bad, and the ugly—in the hopes that it will help you live a healthier life sooner, rather than later. Hopefully, my story will inspire you to seek the help that you need to live the healthy, pain-free life you so deserve. Remember: it is not your fault you are in pain; it is not anyone’s fault. While it may be hard to find a doctor out there who really cares and who knows what they are talking about, just keep fighting, because they are out there.

WHAT IS ENDOMETRIOSIS?

The endometrium is the lining of the uterus that sheds every month during what’s known as your period. Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body1. Places this disease can be found include (but are not limited to): colon, rectum, appendix, ovaries, and fallopian tubes. Some women may have endometriosis on many organs in their body, but may not experience any pain, while others may have a small amount of disease, but excruciating pain.

If a woman has endometriosis, when it is “that time of the month” the endometriosis tissue that is on the other organs—for example, the ovaries—will also bleed just as the normal tissue does. This causes inflammation, which causes pain. It is not known why this happens, or why it is more painful in some women than in others, but it is known that estrogen causes the endometriosis to continue growing.

Some of the symptoms of endometriosis include pelvic pain, painful periods (cramping), infertility, and pain during sexual intercourse. Sometimes, other conditions can be confused with endometriosis; for me, my misdiagnosis was irritable bowel syndrome. This type of misdiagnosis means it takes the patient longer to be properly diagnosed with endometriosis and receive treatment.

While reading, keep in mind that everyone is different, so what works for me may not work for you, and vice versa. By no means do I claim to be a doctor. I have been through the agonizing pain of endometriosis for many years and have experienced the treatments available for endometriosis, which is what I look to write about here.

I missed out on so many fun things because of this disease. I am now twenty-seven years old, and most people my age are out partying, taking trips, or enjoying college. But I could not do any of the things I enjoyed because I knew I would be in constant pain. I have felt like a lot of people do not see me as a person after they hear about my diagnosis. Instead, they see me as my diagnosis: endometriosis.

This book presents my experiences with endometriosis in the order that they took place in my life. I hope by writing all of this, I can help more women understand this disease, and perhaps help doctors to understand how their patients suffering with this awful disease really feel.

—Excerpt from the Introduction by Samantha Bowick