Illness is illness regardless of the name we put on it. Invisible illnesses, however, are treated differently. Too often, conditions where one is affected internally, are met with dismissal and are missing an element of empathy from outsiders.
Life is filled with ebb and flow, highs, lows and in-between. Successes are celebrated while struggles and disappointments can leave us challenged and seeking answers. Everyday life is the norm and suddenly there is a shift. What do you do when you are in the best shape of your life and your body begins to betray you? What do you do when pain is constant and you are not given the answers as to why? What do you do when no one seems to understand your plight or care to?
In spite of this, you find yourself still here. Standing. Clawing. Fighting your way back to where you once were with regard to your physical, emotional and mental well-being.
Below is a personal story of tragedy and triumph:
Let the Lion Sleep
It was in 2013 when I first learned about the fibroids and cysts. Having been referred to an OBGYN specialist to explore my options, my initial thought was that this was no big deal. The cysts and fibroids did not bother me and I did not feel the need to bother them. “Let’s leave them there” I told myself. “Why wake a sleeping lion?”
Fast forward to the next year, 2014, I had my annual physical again. My primary care physician was alarmed that my blood levels had become dangerously low. Anemia is common among women, but my levels had drastically fallen. Going back to the Specialist, I underwent some testing in an effort to find out what could possibly be the cause of the anemia. With my OBGYN now retired and no longer on staff at the Women’s Center, I became frustrated and perplexed. I now have to share the entire details of my medical history with a new doctor. I was provided with a stand-in OBGYN that I never fully gained confidence in, however, I met with them anyway. I chose not to pursue the options they presented.
During this entire ordeal I often looked to my mother for strength and comfort. My mother has been deceased now for over 20 years. She was also anemic. In addition, Mommy had a bevy of issues with cysts and fibroids and even experienced a horrible miscarriage. Minus the miscarriage, I had no idea of what she endured until now. You can call me stubborn or strong-willed. I guess it’s all in what vantage point you choose to view the situation. Stubborn seems negative, while strong-willed sounds positive. Perhaps I was being cautious too. Either way, it took unusual and irregular bleeding with pain to realize that something was terribly wrong with me. I could no longer afford to leave this be. I was affected in ways that I did not fully comprehend at first; from the frequent bathroom visits to the heavy and irregular bleeding to the constant razor-sharp cutting pains in my abdomen.
“Dance like no one is watching
Sing like no one can hear you
Live like there is no tomorrow”
In August of 2015, I travelled abroad to Turkey & Greece. The experience was one for the ages and below is a photo of me on the island of Crete at one of the local shops:
This excursion was something out of a dream, a true trip of a lifetime! I explored the ancient ruins in Ephesus where the first Christian community was formed and where Apostle St. John penned his letter to the Ephesians. I walked through history at Acropolis and ventured through the beautiful shops and old historical neighborhoods of Karakoy and Plaka. I did everything that made my heart sing; from dancing to the rhythm of turkish belly dance music to chowing down on delicious and fresh seafood, Greek salads and feta cheese, all the way to beach lounging and water skiing in Mykonos to watching the sun set with some great friends in Santorini. It was an unforgettable experience!
After the trip to Greece, thanks to a dear friend and confidant, I sought the opinion of another OBGYN specialist. This one came highly recommended from my friend and had the health grades and patient reviews to support the claim. I was confident in their skills as a specialist to deal with matters such as mine. Options were explained and I elected to have the cysts and fibroids removed along with a partial hysterectomy, choosing to keep my ovaries. The procedure was performed through laparoscopic surgery on December 3, 2015, just a few months after I returned from my trip abroad. Post operation, I was informed that a severe case of Endometriosis was discovered. It left me asking, “Endo-who? Endo-what?”
I quickly immersed myself with knowledge of the disease, asked a ton of questions and learned as much as possible. Endometriosis is a medical condition shown by growth beyond or outside the uterus. It is composed of tissue resembling endometrium, which is the tissue that normally lines the uterus. This disease occurs in roughly 5 to 10 percent of women and can also occur in post-menopausal women. Early detection of Endometriosis is rare and uncommon because it does not show up on sonograms, MRIs or x-rays. It requires a microscopic minimally invasive view, (such as a laparoscopic procedure), to see where exactly the growth of the endometrium tissue is located.
I am incredibly thankful that I was in the best shape of my life before undergoing the surgery. If I had not been, I cannot imagine having such a quick bounceback of healing and recovery. I began my running regime 1 month post operation and by month 4, I completed the Richmond Monument 10K in my best recorded time ever! The kicker in all of this was that in the preparation and training for race day, my body was still going through PMS-like symptoms (e.g., abdominal cramping, bloating, fatigue, emotional mood swings, etc.). It was as if I still had a monthly cycle, but without the bleeding. As each month passed, the symptoms increased more and more and my days of relief from the pain got shorter and shorter.
There are millions of women who suffer from Endometriosis, but are hidden. Their voice has been silenced because they have been told that they are either neurotic, or that their pain is normal and that it is no different from the pain that women who have a regular menstrual cycle experience. The pain that women with Endometriosis experience is anything but normal. Lesions of endometrium can become adhesive to the bladder, intestines, diaphragm, bowels and even spread to the lungs. As a matter of fact, bowel Endometriosis affects 10% of women with Endometriosis and can cause severe diarrhea, constipation and pain with bowel movements. It is a horrible way to live.
When it comes to your health, “to thine own self be true.” In other words, listen to your body and trust your judgement.
After the surgery I found myself going through the pain all over again and as time passed, it worsened. The days of relief shortened drastically. For those who know me and who know me well, know that I am fiercely against taking pharmaceutical drugs or opioids to relieve symptoms. As a matter of fact, I only ingest them in cases of extreme emergency. The pain medication prescribed to me after surgery was taken for 5 days and 5 days only. I was determined to wean myself off of them as quickly as possible. When my symptoms returned, (which was immediately), I dealt with that pain until I could not any longer. I ended up succumbing to the pressure and started to take the leftover prescribed pain meds from the surgery.
Drugs are a band-aid and no one in their right mind should want to be dependent on them for the rest of their natural living. I researched the condition of Endometriosis thoroughly and decided there was no way that I would go back under the knife again. I also declared that I would no longer continue to take medical drugs to treat my symptoms. I saw a Gastrointestinal doctor on June 24, 2016. I wasn’t sure if the symptoms were related to Endometriosis or possible food allergies, Irritable Bowel Syndrome (IBS) or Chron’s disease (as the symptoms are all eerily similar). I spent thousands of dollars seeing specialist after specialist and every recommendation received, I scrutinized and prayed over. While I am appreciative for my doctors, I understand that they are not God. They are practitioners. Many fatten their pockets and receive money and kickbacks for the surgeries they perform and the drugs they recommend or prescribe. I’ve been fortunate to find physicians who can be trusted and as a result, great relationships have been birthed. One of the takeaways for me in all of this is that the medical profession can be ugly, but if you want more to life, get a doctor that you can trust, become an advocate for yourself and question everything!
Getting to the Heart of the Matter
After I told my primary care doctor that I met with a Gastrointestinal specialist, she recommended that I look into the “FOODMAPS” diet for IBS. I wasn’t sure, however, if it was IBS. It was at this point that I decided to take a look into a natural path toward healing. I literally examined all of the foods I ate, kept a diary and took note of my body’s reaction to the foods and drinks that I ingested. Meat, dairy, refined carbohydrates, soy products, alcoholic and sugary drinks were all evil. Plant based foods and fruits low in glucose/sugars were all heavenly. Essential oils and aromatherapy were a god-send too. My wife created an essential oil cream that I would routinely spread over my abdomen and pelvic area to help mitigate the pain. Heating pads, saunas, hot tubs, yoga and tai-chi were helpful as well. I invested in a juicer and began juicing my vegetables to give me that plant-based diet I found so hard to do. It was my hope that the change would be easy and that improvement would happen overnight. My hope, unfortunately, was not realistic. My world had literally turned upside down and making a drastic change like this on a consistent basis was extremely hard to do. There were days when I succeeded and there were days when I completely failed.
I called my OBGYN and he prescribed an order for me to have an ultrasound. The ultrasound revealed several cysts on my ovaries and a huge cyst on my right ovary. Because ovaries produce estrogen and estrogen is what feeds endometriosis, my symptoms were Endometriosis related rather than food allergy, IBS or Chron’s disease related. Polycystic Ovarian Syndrome (POCS) coupled with Endometriosis should not be taken lightly. First there was the thought, “What if this is cancerous?” Second, having all those cysts wreaked havoc on my quality of life.
Had I known that I had Endometriosis prior to that December 3, 2015 surgery, I would have opted to have EVERYTHING removed (ovaries included) – but I did not know. I wasn’t pleased to learn that the cysts had returned and were stuck to my ovaries, however, I was relieved that I now had proof to substantiate my complaints of pain. It was also comforting to know that I did not waste more time and more money with the Gastrointestinal specialist; only to discover that my symptoms were not related to any of the conditions he could have treated.
My OBGYN presented me with the option to do nothing and deal with the pain and symptoms, or to shrink the cysts by having shots of a drug called Luproen, or to have my ovaries surgically removed along with an extensive excision of the endometrium tissue growth. Again, mentally I was relieved to know that I wasn’t a hypochondriac and that I was not having hallucinations, however, I was determined not to go the radical route. After all, this is surgery and surgeries are a complicated matter! I was determined to go through a natural path for remedy.
It took some time, but with my consistent change in diet I began to see improvement. I was still plagued with my symptoms, but I learned to live with it and would plan my life around the episodes, whenever they would occur and as best as I could. I became less active and stayed close to home as much as possible during my free time. After the application of the natural remedies, the symptoms became infrequent. I saw this as a positive and continued on this path.
The pathology findings from my surgery showed no signs of malignancy. This left me with a huge sense of relief. As I continued my research, I learned that Endometriosis was linked to ovarian cancer. Furthermore, I wondered what would happen if that huge cyst on my right ovary ruptured? Did I want to risk an overgrown cyst rupturing? Did I want to be at risk of having to undergo emergency surgery if that were to happen? Did I want to risk possibly developing ovarian cancer because I was adamant about keeping my ovaries? Did I want to continue with the symptoms of pain, fatigue, moodiness, bloating, and more? Of course not.
Knowing that the removal of endogenous estrogen production would be effective in helping to address the Endometriosis, I was still left with a few issues to consider:
1. The surgical removal of my ovaries would force me into early menopause.
2. How would I respond to menopause?
3. Without a known cure for Endometriosis, a full hysterectomy is often seen as a permanent solution to the pain associated with this terrible disease. There is, however, a small number of women who will experience a return of their symptoms. How could I avoid being one of those women?
Decisions, decisions … decisions. Do I let menopause take its natural course or do I opt to have another surgery to have the cysts & ovaries removed?
On December 1, 2016, I opted to undergo my second surgery for a complete hysterectomy to remove both ovaries with an extensive laparoscopic excision, removing and destroying all endometrium growth and scar tissue. In a matter of 11 months and 28 days, I underwent back to back surgeries. How amazing it is that I am able talk about it today! All glory and praise goes to God!!
A major side effect of having a bi-lateral oophorectomy is that you immediately go into menopause and in my case, early menopause. There are pros and cons involved with this option. The risks include hot flashes, osteoporosis, cardiovascular issues like heart disease, memory loss, dry skin, headaches, weight gain, emotional instability, a loss in libido, a decline in cognitive skills and more. The pros involve; hitting menopause at lightning speed, reducing the risk of developing ovarian cancer and combating Endometriosis and POCS by removing the ability to produce estrogen in the body.
Menopause is really strange. Each person’s experience is different. In my case, my symptoms started out with headaches and the headaches would only come at night time. Headaches for me, have always been uncommon. I felt a throbbing at the base of my head on the right side. The use of lavender essential oil, herbal teas and aromatherapy helped tremendously and I no longer have headaches. Next, came the hot flushes. They started out light and infrequent, but as time moved on they lasted longer and longer and eventually turned from hot flushes to a hot mess of flashes. I’d go from cold to hot and hot to cold in a matter of seconds. I would literally have my own personal summer in a room full of people while delivering trainings to my clients. I tried several remedies to combat my hot flashes including black cohosh, evening primrose, and flaxseed oil. None of them worked. It wasn’t until I started to use ground flaxseed in everything; including my vegetables, veggie juices and cereals that I began to see a change. I then switched my diet to include foods with a high level of soy protein. A NutriSystem diet to be exact. In the past, I shied away from foods with soy because of the negative impact it has on people with Endometriosis. Now that the Endometriosis is gone, soy has been my life saver from hot flashes!
When I awakened; my rock, my heartbeat, my sunshine, my wife was there to greet me with her beautiful smile and with a warm kiss. I was in complete disarray and in so much pain. In spite of it all, she held me down like only a good woman could. She is my greatest gifts from above!
Recovery this time was not quick and seamless as it was previously. It took me much longer to return to ‘normal life’ and ‘routine activity’. I mourned and could not quite understand why. I never wanted to give birth to a child, but I always had the option to do so or at least provide my egg to a surrogate to carry on my behalf. The choice to do so no longer remained and it left me with a feeling of emptiness. I felt inadequate and worthless. I did not see myself as the woman I once was. But one night God whispered ever so gently, “I wish that you could see you like I see you.” As time progressed, I came to a place of love and acceptance. I came to understand that I am wonderfully and fearfully designed by the Creator and that I am just as much of a woman as any other. That no surgical procedure or removal of any body part or organs could ever change that.
Although a hysterectomy is not a solution to Endometriosis, it was the best decision I could have made in my situation. I am 7-months post op and since the surgery, I have gained weight and lost almost all of the muscle mass I worked so hard to gain, but I no longer experience constant razor-sharp pains in my abdomen/pelvic region. I no longer have anemia. I no longer have those cysts and fibroids. They are no longer pressing down on my bladder and other organs. They are no longer attached to my ovaries with the risk of rupturing. I no longer have painful bowel movements. I am no longer the emotional wreck I once was. I no longer have chronic fatigue and once my hormones leveled out, my libido and drive is stronger than it ever was before! I felt a tremendous and tragic loss after the surgery, but gradually I have worked my way through. I am not the physical specimen I once was, but I hope to find my way back. If I had to do it over again, I would make the same decision.
Adversity has a way of changing your perspective. I was in a dark space during this time, but I would not exchange the experience. Darkness allows me to be more appreciative of light. I liken it to therapy because in the thick of it, I learn and re-learn valuable lessons, including;
- Not to be stifled by worry or fear.
- To live life in my way and on my terms.
- That I am stronger than I’ve ever really given myself credit for.
- That I am meant to flourish and thrive in this life as well as the next.
- That I am capable of overcoming anything with God and the right people beside me.
- That I intend to spend my future days doing the things I absolutely love like travel photography, writing, learning, sharing and teaching.
Endometriosis is such a private and unseen suffering, but prayer is a chain breaker! It is one powerful tool. I believe in the healing power of God and that prayer changes things. I thank God for hearing and answering my call. The breakdowns, the meltdowns, the rants, the ugly-cry…..you name it; I did it all!
I am thankful that I had a skilled surgeon who was able to successfully accomplish the removal and destruction of the growth that had extensive adhesion to not only my pelvic area, but to other organs as well. The excision helps to not only remove Endometriosis, but also prevent any spread of the disease.
I thank God for my primary care doctor who is comprehensive and excellent with preventative health. If it were not for her recommendations to get screened and tested when she discovered my anemia, this could have turned out differently. She’s the real MVP!
I value authentic, God-given friendships. The kind that recharges and energizes you. I am so thankful for my friend who introduced me to my surgeon and her husband. They are such wonderful people who play a major role in the lives of my wife and I that they make life more meaningful each and everyday.
Endometriosis can have an effect on a person’s ability to work, but I thank God that I was able to endure the pain without having to take time off from work, outside of the surgeries and recovery period. Having a supportive place of employment with clients, colleagues and managers who are understanding helped tremendously.
Last, but certainly not least, I am not sure how this would have turned out if it were not for the loving support of my wife who is my saving grace. She suffered through the turmoil with me and I appreciate her patience, fortitude, love and care. The R&B group, The Four Tops said it best; “Ain’t No Woman Like the One I Got!”
I don’t know if I am completely out of the woods, but it feels like I am. In fact, I am more pain-free now than I have been in a very long time. Since 2013 as a matter of fact. Adhering to a plant-based diet and one that is rich in soy protein has resulted in many health benefits for me. I try to stay away from animal protein, but if I do indulge, it is often with fish or chicken. It is my hope to one day become vegan, to get back the strength I once had and to help anyone who is battling with Endometriosis or menopause.
I am exercising consistently again and I’m up to running 3 miles, 3 times a week now. Although I am slow as molasses and not as fast as I once was, I keep it moving. My joints pay the price as one of the side effects of surgical menopause is joint pain. I work my way through in spite of it and I AM MY OWN REINVENTION. Just call me Jetta 3.0.