ENDOMETRIOSIS IS WHERE UTERINE LINING-LIKE TISSUE GROWS OUTSIDE OF THE UTERUS, RESULTING IN EXCRUCIATING PAIN, HEAVY PERIODS, AND POTENTIALLY LOSS OF FERTILITY. AS PART OF THE EXPERIENCES SERIES, WE INTERVIEWED FOLKS WHO HAVE ENDOMETRIOSIS TO FIGHT THE STIGMA SURROUNDING THE DISEASE.
WHAT DID YOU KNOW ABOUT ENDOMETRIOSIS BEFORE YOU WERE DIAGNOSED? ANYTHING YOU WISH YOU’D HAVE KNOWN?
E: No. I wish I would have known that the pain was not made up in my head and I wish I would have known that some birth controls were not meant to help endo, but instead helped things like cysts and bloating.
H: Nothing, I was diagnosed at 14. I was too young to fully understand or want to know anything
D: I was diagnosed this year (age 21) after several years of not knowing what my pain was. The hardest part about being diagnosed is not knowing if you are able to have kids. Endometriosis can differ throughout every person’s body. There are times where the pain in manageable and times when it is not. Some people are able to have kids just fine and don’t need a hysterectomy. Other people find themselves needing a full hysterectomy after they have kids. When I was diagnosed they told me it was very severe and they were unsure if I would be able to have kids until I actually tried. I always saw “speak-endo” on my social media. I never knew much about endometriosis until I started having weird pain. I studied the symptoms for about a year until the pain became too much to handle. I was having a lot of stomach pain, some that was unbearable.
S: I was first diagnosed with endometriosis in my high school years, around the age of 15 years old. I had was very painful periods and intermittent pain in-between menstrual cycles. Over the counter pain medications and heating pads became my best friend during those years. I wish I would have known how common it was. I went to several doctors who told me that it was just my period and there was nothing to worry about.
WHAT DOES A FLARE-UP LOOK LIKE? WHAT DOES EVERY DAY LOOK LIKE?
E: I have a pain in my side, in my left ovary because I have endo in that one. So I am always aware of my ovary, and a flare up is usually accompanied by vomiting, fatigue, migraines, bloating, excruciating pain in the lower abdomen ( the lower back is one of the worst one), it sometimes feels as though you’re contracting like you’re giving birth since your uterus IS contracting, but it feels a lot more intense than a regular period.
H: Flare-ups are rare for me. I had surgery right away to get it burned and got on birth control to help. The worst is with periods. Cramps were so bad I would bend over in pain. I couldn’t do anything when I had my period.
D: A flare up typically happens in the middle of my cycle or right when my period starts. During the middle of my cycle the pain tends to compare to period pain such as cramping, bloating, etc. I have also noticed flare ups due to food intolerances such as dairy.
S: Endometriosis causes a lot of pain which led to me missing a lot of school during my menstrual time which led to difficulties with grades and friendships. Also, I think my mother thought at times I was faking it or just being a big baby. The pain was so excruciating often leading me to just lay down in the fetal position with a heating pad. I was fortunate enough that although my periods were painful, it did not involve heavy bleeding.
WHAT TREATMENT OPTIONS HAVE YOU DONE AND WHAT HAS WORKED THE BEST FOR YOU SO FAR?
E: I have tried almost every birth control under the sun, I have had a laparoscopy which worked for a few months before we found out that it had entered by ovary. Now I have to have another surgery and up a dosage of pure hormones to suppress my periods and put my into menopause.
H: The surgery right away helped immensely. They caught it soon and told me I was young for it. Getting on birth control to minimize periods helped as well.
D: The treatment options the doctor suggests is birth control. I have not taken any since I had my surgery (May 9). I am very skeptical of taking it only because I believe that birth control was what gave me my issues. With celiac disease, I am more prone to inflammation in my body. When I was first put on birth control, I was put on a very high dosage of hormones that was used to treat acne when I never had bad acne in my life. There are many stories of birth control creating weird side effects after so many years. My birth control did that to me on year 5 when I became very anxious and depressed. I ended up going off birth control completely and felt 100x better. I fully believe that birth control was a contributor to my endometriosis.
S: By the time I was 21 years of age, I had 3 exploratory laparotomies. I was told the only way to resolve it or cure it was to get pregnant and that generally will cure the Endometriosis. I was able to get pregnant without difficulties when I know so many that are not able to due to endometriosis. I was cured for a 20+ years after the birth of my first daughter. It was only in the last year when I became symptomatic again. I was back to the fetal position, Ibuprofen, and heating pads. I finally went back to the doctor and recently had to have hysterectomy due to severe endometriosis including having to remove my ovaries due to the severity of the endometriosis. Which means now I get to go through Menopause in the 40's which I had hoped to avoid.
WHAT ADVICE YOU WOULD GIVE TO SOMEONE WHO HAS ENDOMETRIOSIS OR TO SOMEONE WHO IS A SUPPORT PERSON FOR SOMEONE WHO HAS ENDOMETRIOSIS?
E: I would say always keep a heating pad, pain medication, and comfortable pants nearby. I would ALSO say; don’t let the doctors make you think you’re crazy. Wait until you find someone who tries to understand your pain.
H: I would recommend a birth control that limits your periods if it is something you are comfortable with. And anyone who supports someone with endometriosis should understand that it isn’t your usual period cramps. They are much much worse and should not be treated the same.
D: If you believe you have endometriosis, you should track how you feel and study how your body reacts during your period. When I had period pain in the middle of my cycle, I knew something was up. I also had very long periods. It’s important to have a doctor that you can trust and who can understand what you are going through. It is very easy to misdiagnose endometriosis and unfortunately the only way to diagnose it is to go through a laparoscopic surgery. No matter what, it is very important to trust your gut on issues like this and get many opinions. I have never had a doctor diagnose me with anything I didn’t already know. Know your body and fight for how you truly feel. We know when our body is off, don’t let anyone tell you different.
S: My advice for others is to pay attention to your body. I would encourage all to have regular gynecology visits. Some physicians may be dismissive of your symptoms but you know your body better than anyone so you must advocate for yourself. You do not have to live in pain. Be your own advocate.
WHAT IS SOMETHING YOU WISHED THE WHOLE WORLD KNEW ABOUT ENDOMETRIOSIS?
E: That it is a chronic illness. Sex? Nope. Daily activities like bending over? Nope, hurts. It isn’t just a period pain. It’s an everyday bleeding internally pain.
H: It’s more common than it is talked about and it effects women more than your regular period. It shouldn’t be treated the same when it comes to work and other responsibilities
D: There has been many days where I have been very down due to the fact that I don’t know if I can ever have kids. I am sort of on a ticking time clock because the longer I wait, the less chance I could have. Endo is also not curable, usually the pain will last forever, even with a hysterectomy (removing the uterus).
Responses have been edited for clarity and names have not been included for privacy reasons.