I’ve secretly suffered with the pain of Endometriosis since I was a 10-year-old girl. Imagine a young girl walking the halls of elementary school with jackets and sweaters tied around her waist in the summertime scared that I might have an embarrassing “accident” due to heavy bleeding. Not understanding why for days at a time I had to lay in bed with disabling pain, vomiting and unable to keep food and pain medication down. Ginger-ale, crackers and heating pads became my sanctuary for days at a time each month.

At 12-years-old I remember vividly getting diagnosed with Endometriosis. My gynecologist prescribed to me birth control pills. My primary care doctor said to me (a child) “now this doesn’t mean you can go out and have sex without condoms.” Then she preceded to give me the abstinence talk and essentially chastised me for needing to take the birth control pills. I was so ashamed I actually signed up to visit Planned Parenthood a “safe” place where I could get my birth control pills at no cost and without judgement. No child should be shamed by a doctor for seeking medication that was prescribed to help a serious medical condition like Endometriosis (but I was.)

The birth control pills helped for several years but not without multiple side effects. I experienced hormonal changes. Constantly cried. Had periods of depression. I gained weight. My hair fell out multiple times. My skin would sometimes experience acne. I had spotting. Each time I would tell my gynecologists and primary care providers they would dismiss my concerns.

During the ages of 18-years-old to 32-years-old I was able to successfully serve in the United States Air Force. I struggled with Endometriosis, Fibroids, and Ovarian Cysts. I was constantly at sick call due to heavy bleeding, vomiting, severe pain and anemia. I had multiple surgeries to diagnose and to alleviate the pain. Nothing worked. Many times I was accused of malingering meaning “faking my sickness.” Men and women supervisors did not understand “why I wasn’t getting better.” There was very little compassion. I learned to deal with my suffering in silence. There were moments when I went to work and quietly vomited in the stalls during my shift-work. I would bring heating pads, crackers and ginger-ale in my bag. Mission came first!

At 30-years-old I decided to stop taking the birth control pills and to undergo the fertility workups to see if I could have children. Infertility is common with those who suffer from Endometriosis. I endured painful months suffering quietly with my periods. The doctors performed exploratory surgery to remove the Endometriosis. At this time my military chain of command threatened to punish me for undergoing an “unnecessary” surgery. It was difficult to explain to the woman that was my military leader how severe the pain was during my menstrual periods. She didn’t empathize because she had never experienced such pain. In her mind it was completely made up. I ultimately decided to end my Air Force career and focus on my health. I wanted to beat Endometriosis and needed peace of mind and freedom to seek the necessary healthcare treatment.

At 35-years-old, my periods became heavier. I once bled for 45 days straight. My anemia had reached severe levels. I remember going to the emergency room. It was a Catholic hospital. They refused to give me the birth control needed to stop the bleeding citing religious reasons. My gynecologist previously inserted an IUD to “help with the bleeding” but it made matters worse. The emergency room doctors immediately removed the IUD. I was suffering in my own hell.

As a civilian I thought the workplace support would get better. It didn’t. My civilian manager actually called me into her office and said: “Your sick leave balance is low. My leave balance has never gotten this low. It looks bad.” She never once thought to ask me what was going on or what I needed. I voluntarily showed my management all of my medical paperwork. I was able to go to my medical appointments, take the necessary time off when I was in chronic pain or vomiting and get surgery without going into the negative on leave. I ultimately was forced to file an EEO complaint for discrimination due to a documented medical disability.

Fast forward to the present. At 38-years old, after multiple surgeries, prescriptions and diagnosis of Endometriosis, Fibroids and Ovarian Cysts I still suffer with the chronic pain. I’ve tried Chinese Medicine, herbs, accupuncture, herbal teas, exercise, vegan eating, just about every treatment recommended. Nothing has worked. There’s been countless times where I’ve missed work, social events, and other commitments due to being in the emergency room or being in bed unable to move. My quality of life has suffered severely due to Endometriosis. Unfortunately a hysterectomy may be my only relief. I hope a cure is found soon to help those of us suffering in silence with Endometriosis.

~Love,

Simply Ebony a Chronic Endometriosis Sufferer

13 Comments

  1. Hey Ebony , my friend went through the same thing for years she is 35 will be 36 next month and she had to make the decision to have a histerctamy bout almost a year ago and and she is very happy and has no more pain or bleeding. I was with her throughout all the bleeding for bout 2 years and all the surgeries . The only surgery that fixed the problem was a histerecramy. Pray about it and God will tell you what to do.

    Liked by 1 person

  2. I too suffered with this for almost a decade, and ultimately ended up having a partial hysterectomy in 2006, and my ovaries removed in 2011. It wasnt until then that I had true relief. I have been mostly pain free for the last 6 years, which makes it worth it. I’m praying for you, that relief comes soon. Keep on pushing, keep praying, and keep being a voice for those that feel they have no voice.

    Liked by 2 people

  3. I had the same issues but ultimately decided to get a hysterectomy 2 almost 3 years at 30. I had the hardest time at goodfellow afb because I was told I was faking it until I received a referral off base and even then my doc called my supervisor and told them I was taking it. After receiving novsure and an exploratory surgery they diagnosed me with endometriosis after 9 years of constant sick call visits. I will say the pain is gone plus no periods but I still have bouts of cramping and nausea from time to time. The doctors have said it may come back and may already be back but I will continue to fight to make it pass 20. I am so glad you shared your story. I thought it was a losing battle.

    Liked by 1 person

  4. Hi Ebony, I was experiencing the same thing and at 28 I went on the shot after my drs had been experimenting on me for about a year. It stopped my periods and allowed me to get the anemia under control. When I went of the shot my periods were like every two months but after a year it went to a regular monthly cycle with moderate to regular cramping.

    Liked by 1 person

  5. Hi Ebony! I can say that I feel your pain! I suffered with endometriosis for years! I stayed on birth control for years, until we decided to have kids. After 5 years of not getting pregnant, and the endometriosis was beyond extreme, a specialist did the shots for 6 months. It was truly life changing!!! Yes, you will have the side effects of hot flashes and what not, but you will not regret it! A month after the last shot, we got pregnant with our first child! Fortunately, 2 years later, we had our second child! So I can say that the shot is very worth it!! Unfortunately, the endometriosis did not stay away. I have now had a total hysterectomy and would do it again in a heartbeat! The pain from endometriosis is horrific, and I would not wish it on anyone! I will keep you in my thoughts and prayers! I truly hope you can find relief soon! Let me know if I can answer any questions you might have!

    Liked by 1 person

  6. Hello,
    I suffered with Endometriosis for years and I became an Alkaline Vegan and now my periods aren’t very painful at all. You should look into it. It makes a huge difference.

    Liked by 1 person

  7. Ebony, your story mirrors my own in so many ways! Mine started when I was 6 years old, but I wasn’t diagnosed until 19. To be fair, though, who would think to check reproductivery organs on a 6 year old?

    I’d like to offer you some hope, and a couple tips: heat increases swelling, so as much as those heating pads seem to help with the pain, they may actually be making the endo worse. Once I started using ice packs instead, the pain and length of my periods reduced significantly.

    My husband and I were given the impression that we couldn’t have any children, so we stopped all birth control I had been using to regulate my cycle. 2 weeks later, we were expecting our first child. In fact, the only one of our three children that we planned is the one in the middle! Since the birth of my children, all of my endo symptoms are gone. I have regular periods with minimal cramping, no more ruptured cysts, or missing important events!

    I am believing and praying that God loves you every bit as much as He loves me, and your miracle will come, too. I am so excited to hear about it when it does!

    Liked by 1 person

  8. I too was 10 when I started this long journey .. had several accidents in the chair in class. There was a time that I refused to go to school. Even in my time in the army I had accidents and had to always have an extra set of bdu’s in my backpack. Fast forward I had a hysterectomy 10 months ago and no more pain. Please consider this to end your pain . Know that you are not alone .

    Liked by 2 people

  9. Hey Ebony, I’m so sorry that you have had to experience that chronic pain for so long. I am also very familiar to both the constant pain and the lack of sympathy from the chain of command. I’ve experience so many of the “let’s try this” method ranging from the depo, birth control pills, pelvic floor therapy, injections for pain, narcotics, lidocaine patches, multiple diagnostic surgeries even to inducing menopause at 25 years old. Yet pain is still there. Having so much pain really takes a toll on you mentally, physically and emotionally. With the doctors acting like they are lost for answers, I often start second guessing myself and thinking maybe the pain is just in my head but I know it’s not. It’s just so unfortunate. I’m AD in the Navy with a 5yr old active son. He wants to do so many things but all I can tell him is sorry, mommy is hurting to much today. I go in for another procedure in 2 days to biopsy some of the endometrial tissue. They advised not to get the hysterectomy because I’m 27 so hopefully they find their answers this time. I truly pray that one day a treatment other than menopause is available for those of us in constant pain and still want children. I wish I could hug each of you that have experienced this miserable evolution.

    ❤️ Tisha

    Liked by 1 person

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