Good morning Conglomerates. Today I am honored to announce that Nickkie&Co. has a new guest writer that is here today to use her experiences to help other woman who may struggle with a similar or the same chronic condition she does. Eugenia is a super woman – nurse by day, model by “night”- who intends to use her platform, experience & expertise to spread awareness on a condition that marks & effects the lives of many women while finding a natural cure to a said cureless condition. I pray in reading this post that you are inspired to advocate & research your health concerns so women no longer feel silenced by their conditions but feel strength & confidence in knowing that other women are fighting as well. So, I present to you conglomerate/ENDO WARRIOR, Eugenia Odonkor BSN, RN.
Hello Conglomerates! I am ecstatic to be a guest for Nickkie&Co.! My name is Eugenia and today, I will share with you my battle with ENDOMETRIOSIS.
Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. It can even travel up to your brain! Endometriosis can cause pain — sometimes severe. It affects more women than breast cancer but you probably never heard of it. It’s not terminal but it’s also incurable and affects 176 million women!
Growing up, I remember almost all of my female friends talking about their period. They spoke of their experiences and I always felt left out wondering when my menarche would occur. My menarche finally made its appearance at the age of 14, the summer before I became a freshman in high school. It occurred overnight but I hadn’t known until I woke up that morning that I had had my first menses. That night, I tossed and turned in so much pain. I remember telling my mom and my grandma that I wasn’t feeling well and that although it didn’t appear the way everyone spoke about it, it was indeed my menses. This was only the beginning.
A few cycles after that, I noticed I had become increasingly sick prior to my menses. I would have painful ovulation and then when my actual menses would occur, I would have symptoms of nausea, vomiting, diarrhea, lethargy, fainting spells, anorexia (loss of appetite which lead to my having a hard time keeping weight on), etc. I would also be bed and bathroom ridden for the first day of almost every period. This occurred on and off for years! I had suffered in silence for years.
I recall seeing a female gynecologist for a Pap smear (a very TERRIFYING experience for me to this day) who poked fun at me for being in pain during this “quick” procedure. She said, “I should’ve given you a mirror! You should’ve seen your face! It wasn’t that serious!” Of course, I didn’t think twice about continuing to see that gynecologist ever again.
I had given up. I didn’t think I could make it through. I was mentally, physically, and spiritually exhausted. I would miss school and/or work. I almost failed a course because I was too sick to walk let alone go sit through a final exam. Thank God my professor was understanding and allowed me to take the exam when I felt better. During my years of suffering, I ran from doctor to doctor. I had become a test dummy for medications that would just exacerbate whatever was going on with me. Nothing was working. I went for second, third and even fourth opinions. Some would say, “These are normal period symptoms”. Another would refer me to see a Gastroenterologist. One doctor, I had driven 4 hours to go see in Hershey, PA, prescribed futile pain medications. One of these medications was an old antidepressant whose off label use was for pain. I’d sleep all day and have nightmares. This is when I knew I wasn’t “crazy”.
One day, I had done some research and stumbled across a male, Penn Medicine doctor. I decided to give this male a chance because after my experience with aforementioned gynecologist, I vowed to never see another female gynecologist again! You would think a female would empathize with another female since we have the same “parts” but NO! In my opinion, they seem to be rougher. This OB-GYN turned out to be amazing. In fact, as soon as I described my symptoms to him, the first thing he said was, “I think you have Endometriosis.” And I replied, “I think I do too!” Immediately, he scheduled me for a Laparoscopy (an exploratory surgery that is used to diagnose the disease). I was diagnosed by my doctor and also surgeon, at the age of 21, with Endometriosis. Interestingly enough, I hadn’t had a lot of affected areas but suffered so greatly. He cauterized those affected areas and I was fine. I felt great.
However, this was unfortunately not the end of it. I had to have another surgery because I just didn’t feel right. I had to go with my gut and relay my feelings to my gynecologist. Another laparoscopy scheduled. He found twice the amount as the first surgery. All I did was cry post surgery. Even with my family by my side I felt so alone and hopeless. How could one disease make one feel so defeated? I’d always ask God, “Why me?”
In between those surgeries, I had a colonoscopy, cystoscopy and even visited a fertility doctor to rule out the return of the “Enigmatic Endometriosis.” My doctor could not believe that I was still symptomatic! Every time I came for another appointment, he always said, “Eugenia, your condition really has me scratching my head.” He was just as tired as I was- tired of trying to figure out why I was always sick and never free from feeling better. It would seem I had gotten worse. Again, my gut told me, I needed another surgery. He frowned upon going in again but I begged for a third laparoscopy. May 18, 2015, I had had my final laparoscopy. We both were baffled to have found only a few, small affected areas. Keep in mind that one may have small areas and suffer greatly as opposed to another woman who may have extended amounts of affected areas and be simply asymptomatic. My doctor cauterized (burned outside of the uterus) his findings then said that in order to keep from being symptomatic, I must shut my reproductive system down to make it think it’s in menopause, in order for this disease to SLOW DOWN. I emphasize those words because sadly, this disease is incurable.
I was put on Lupron, a medication that puts the female reproductive system into pseudo-menopause (after months of not wanting to try it due to the horror stories I saw on google) to temporarily inhibit the disease from feeding off of my own hormones. Lupron ended up being my savior. The down side to this is that I can not be on this medication consecutively past one year. Side effects include bone loss; what I’m currently suffering from. I have to consume Calcium and another medication called Aygestin (Norethindrone; “add back therapy”) concurrently with the Lupron to keep from acquiring other diseases such as Osteoporosis.
Due to insurance issues, I no longer see the Penn Doctor who diagnosed me with the disease. I am forever grateful for him. He actually listened to me and empathized. He was Heaven-sent!
I found another male OB-GYN who was highly recommended to continue my care. My Lupron deadline had approached and my new OB-GYN placed me on DEPO PROVERA. This was also a nightmare because I bled and had cramping for an entire month STRAIGHT. I made an appointment to explain what was occurring and during my appointment, I was told that I need to have a Hysteroscopy/ Dilatation and Curettage done to explore the cause of bleeding. It was found that I had had a polyp on my vaginal wall. That too was cauterized.
I am currently back on Lupron. Although I’m on the medication, I have occasional unexpected flare ups and they especially happen when I am stressed. I plan on putting a halt to the usage of this medication and finding natural/homeopathic remedies to feel better.
Despite all of my tribulations, I attained my Bachelor of Science in Nursing, I try to remain positive and keep my faith in God.
I wish this story had a happy ending. I wish I can say I’m cured from this disease but unfortunately, I am not. With my Nursing background, I plan on discovering a NATURAL cure for this debilitating disease!
Ladies, please care for yourselves. See a doctor, do plenty of research, and most of all- TRUST YOUR GUT!
#Endometriosis #EndometriosisAwareness #SpreadTheWord #EndoSucks #FEndo