Hello everyone. My name is Shanikwa but I go by Neek.

I am a chronic illness warrior from Jersey. My journey with endo has been a wild one. Do you know that many people do not know or have heard of endometriosis? First, what is endometriosis? Endometriosis is described as an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.

There are more than 200,000 cases per year in the U.S. There are 4 different stages of endo, stage 1 is classified as minimal, stage 2 is mild, stage 3 is moderate, and stage 4 is severe. Some symptoms of endometriosis are painful intercourse, painful ovulation, heavy or irregular bleeding, pain in your pelvic region, lower back, fatigue and exhaustion. Some women may experience these or no symptoms at all .An estimated one in 10 women has endometriosis, but it can take anywhere from three to 11 years for them to be officially diagnosed with the condition once their symptoms start. While information regarding endometriosis has become more widely available, there are still some racial disparities when it comes to the disease. Even more so, black women are less likely to be diagnosed with endometriosis due to overlapping health conditions such as uterine fibroids. Also and unfortunately, doctors are less likely to take our pain seriously and write us off. One example of this is with Tia Mowry. She stated in an interview in 2017, “. In her mid-twenties, Mowry was diagnosed and like many Black women her age, her symptoms were dismissed as being “normal.” She shared the following in an interview with 21ninety.com

“Each one would brush me off. ‘Those are just really bad cramps, some women get them more severely,’ one told me. ‘Just put heat on it,’ one suggested. Another doctor simply said: ‘Get on the treadmill—working out helps.’ Deep down, though, I always knew what I was feeling was more severe than just cramps. No one should ever have cramps so bad that they’re ready to call an ambulance. I once found myself crying in the back of my car, and my sister Tamera had to drive me home because I was in too much pain to drive.” Racial disparities in healthcare for black women are way too common and I hope that raising awareness will help lessen that.

My journey into endo has not been a pretty one. Ever since I first started my cycle at 10, my periods were so heavy and the cramps were super intense, to the point where I would have to miss school for the first two days. I would be bent over in pain.

When I told my then GYN, they were like “oh nothing”s wrong with you, let’s put you on BC (birth control) “.  While BC can help regulate periods, help with cramps, it didn’t really help the debilitating pain and I gained 40 pounds being on the depo shot. 

After suffering from a miscarriage and undergoing a D&C in my teenage years, I felt like my periods and symptoms got progressively worse as I got older.

Fast forward to 2018 when I first started seeing Dr.Udoh. I love Dr.Udoh, she is one of the best OB/GYN’s ever. She’s so personable, sweet and she listens! She is one of the few black OB/GYNs in my area. She didn’t push my pain off or write it off. She offered me options. We first tried BC again, which did help a little this time but not enough. We finally decided in 2019/2020 to do a laparoscopy.

January 30,2020 I underwent a laparoscopy. A laparoscopy is a surgical procedure in which a fiber-optic instrument is inserted through the abdominal wall to view the organs in the abdomen or to permit a surgical procedure. At this time, Dr.Udoh and her surgical partner looked at my reproductive organs. She did find endometriosis on my ovaries along with fibroids. The endometriosis tissue was too close to my ovaries, so she decided not to laser it off, which is something they can do.

After my procedure, we decided to go on Orlissa, which can help with shrinking Endo. I was on it and it definitely helped with the terrible cramps and pain, it also ended my periods for the time being. Unfortunately, my insurance stopped covering it at 100%, so we had to switch to another medication. I started on norethindrone, which contains 2 hormones, estrogen and progestin. Unfortunately, it did not help as much as Orlissa and I am currently back on birth control due to an infusion I receive for my lupus. Due to having 3 chronic illnesses, my symptoms are always heightened and that can make it extremely difficult to treat. 

All in all, endometriosis is something that should be talked about more especially with black women. I pray that one day there are a lot more treatments and medications used to help treat endometriosis because it’s more common than you think. I also pray that we as black women are taken more seriously regarding our pain. Endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 176 million women in the world.