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My Life Stronger Than My Endometriosis

In the Medical Office It is July of 2018, and I am in the waiting room of a hospital in Los Angeles.  I am seated and going through a pile of medical papers when I raise my eyebrows in amusement at a drawing of a blank female body.  It looks so familiar to me since […]

Courtesy of Quang Nguyen Vinh / balance stacked stones
Courtesy of Quang Nguyen Vinh / balance stacked stones

In the Medical Office

It is July of 2018, and I am in the waiting room of a hospital in Los Angeles.  I am seated and going through a pile of medical papers when I raise my eyebrows in amusement at a drawing of a blank female body.  It looks so familiar to me since I sketched one just like this a few years ago after a mega-crisis due to endometriosis pain.  It prompted me to recall exactly where the pains were located, piercing half of my pelvic region.  That particular time, I endure five sharp pains simultaneously – oblique, vertical, horizontal – during a seven hour stretch of time. 

For seventeen years, I had cohabitated with endometriosis and its accompanying painful side effects which gradually increased in both density and length of time.  Each month, my PMS persistently knocked at my lower back, etching with its sword in filigree, starting from my right side both in the front and in the back.  Over time, those pains inevitably invaded these parts of my body for longer and longer periods of time, remaining with me for anywhere from three to eight days, and occasionally even more…

The Beginning of the Farewell

At the medical office, I am about to officially decide to have the hysterectomy and ovariectomy.  A part of me is in pre-relief mode, while another part is just a bit nervous.  I am aware that my female organs gave me the best they could and now I am about to bid them farewell.  When suddenly, I recall walking through Les Landes (an area in southwest France along the coast) with my friend Olivia.  We are both twenty years old and have just finished reading a magazine article about “the four seasons in a woman’s life.”  I remember vivid excitement of being a young woman with my multi-colored life ahead of me.  It seemed to me then that life would be a long journey.  And now, in the blink of an eye, I am here 25 years later waiting to tell my doctor that I want to shorten my summer season and accelerate my entrance into autumn.  I am in the habit of taking a few minutes to breathe with awareness and to feel the present moment, just to stop for an instant the rhythm of my hectic modern life:  I just look around me, observe, feel my body, and add a thought of contentment.  However, at this particular time in this particular room, I do not take inspiration for the present moment, but do take a very long and deep breath in order to merge together these two seasons.

My Period’s a Not-So-Easy Story

When I look back at my relationship with my menstrual cycle, it was never like “an envelope sent through the mail” (as we say in French) – meaning never simple, nor easy.  It was never an experience of “it comes and goes” and that’s it.  I was eleven and one half years old when I had my very first period.  A few months after my periods first began, I started to experience pelvic pains, or what one calls painful periods.  This “bar” under my belly button that puts pressure on my lower abdomen.  Those pains lasted three to four days each month for years and years.  For medication, I took aspirin.  This may sound strange, since it is known that aspirin is also a blood thinner, but it worked.  At least I was lucky enough that my periods had good manners and showed up with punctuality.  My body became used to this buddy coming on time each month and bringing its pain along.  My grandmother and my mother witnessed a whole new world through my experience, since they never had to endure this situation.  They were heartbroken to see me in such a condition.  I moved like a bunny, hopping and hoping to disperse the cramps.

Origin of my Resilience with Pain

Although my relationship with pain started with my own experience at a young age, it was also influenced by observing my grandmother’s own physical suffering.  She was the classic “good grandmother,” wiping away my tears, slipping me a ramekin of chocolate cream, or telling stories of another time.  Yet, she also taught me – unknowingly – to not be afraid of pain, but to accept it whenever it comes knocking.  She was suffering from rheumatism and Morton’s Illness (neuropathy in the feet).  When the pain was piercing, she would slightly cover her mouth with her fingers and tighten her mandible, then close her eyes and take a short intake of breath.  Yet, she always remained calm with a small smile saying it will be okay and not to worry.  As it could seem obvious, I was suddenly aware that I was not the only one to have physical pains and it was touching all ages.  My grandmother’s attitude had a deep impact on me, helping me to accept the existence of my pelvic pains that would undoubtedly increase.  Therefore – I took things one month at a time.  At the age of twenty, my gynecologist found a rather enormous cyst the size of an orange.  Within a month, I followed a hormonal treatment that reduced it considerably since it shrunk to the size of a hazelnut therefore no surgery was necessary.  During the ultrasound she took afterwards, she then made quite a discovery and announced to me that I had been born with two uteruses, known as a “bicorne uterus.”  I recall feeling pretty special that day.

 “Endo-Life” – Here it comes!

A decade later, a few years after my arrival in the U.S., I started experiencing for the first time sharp pains on my right side, that were not the same as normal period pelvic cramps.  At the age of 30, this new kind of pain began its reign over me, as well as expanding its realm in the form of rosacea on my face.  This new type of suffering was caused by endometriosis, which I had never heard of before this time of my life.  Nevertheless, at that time, just to have a name for it brought me comfort. The only treatment was birth control pills, but I did not wish to follow that protocol.  During the first few years, I had a few very severe episodes that sent me to the emergency room.  However, if I compare the first endometrioses pains with the last ones that I experienced before my hysterectomy, my reactions changed drastically.  I knew what they were, and the momentary panic attack facing them faded away with time.  When it was that time of the month – virtually every month – I became rather reclusive, finding refuge in my bedroom, with closed curtains, darkness, and silence.  I would lie on the bed, rolling in various directions, walking around the bed with a certain cadence, and seated at the edge of the bed flexing various muscles, depending on what gave me the biggest sense of relief – or more accurately – diminished any noticeable pain the most. In reality however the pain never went away. I was stabbed regularly by one or several “swords” from the back to the front, and on my right hip bone, regardless of my strategy and action.  I was alone with my endometriosis.

 Let’s Face It

I was facing them with acceptance – small pains or monumental – but I was not fighting them.  There was no points…why add internal stress into the mix? I was able to react in that manner because for years, if things did not go the way I wanted, I felt bad inside, and frustrated, and I was upset. And yet life was working itself, on its own, and I did not need to go through all this negative shebang.  A long time it took me to realize that it was not worth it at all.  Now with my endometriosis, I was learning to let go, and I was not ready to make the same mistakes again.  My head and heart were not invaded by despair, fear, or anger, or even telling myself that if I did not have them, I would be doing other things, or I was not sending into the air the questions of “Why?” and “Why me?”.  Those pains are deeply deeply excruciating but not life threatening, and I believe this is what gave me strength, too.  Once, my mother (who is Roman Catholic) told me, “Give this pain to God, do not let it go away for nothing.”  And so I did.  Through life, I became a believer of goodness, love, compassion, and gratitude –for others of course but also it is important to be kind with ourselves (which is still a work in progress for myself).  A part of my attitude, when facing the pain, was as if I were in a plane that would land in a number of hours, and each second of pain passing by was a second less to undergo.  Time was taking another shape.  Suddenly it was like an invisible coat that snatched me and, in an instant, disconnected me from the outside world.  I was with me, my soul, my pains, and my body.

 My First Grieving

With time I manage – taking painkillers, staying in my bedroom, and once again accepting and not adding negative energy like frustration.  I began getting used to them until one day the pain was more severe than any other day I could remember on my right ovary. The doctor recommended to remove the cyst that was the cause.  For a few months after its removal, the pains were almost nonexistent, until one day I had a tiny – but persistent – bubble on my right side that wanted to become bigger and to burst during my periods.  Slowly the stabbing came back, and two years later – due to intense pains I remembered having the feeling that another cyst was back.  Indeed one did.  I intimately came to realize that reality told me to say goodbye to my right ovary as I was sobbing in the shower a morning.  One could have thought that I was sad and afraid about putting at risk any future pregnancy, but I was mainly grieving that a part of me which made me a woman had to go, and I had to say goodbye like I would say farewell to an old friend that I knew I would not see again. Nevertheless, I knew that life would always bring me whatever need I had if I were vigilant and attentive to my surroundings and my encounters.  I have always known that will be a mother one day.

 A Deeper Call to be a Mother

When I look back at my past as a pre-teen, I can see the beginning of the acceptance of my periodical condition.  I remember telling myself that if it were all that life would give me to face, and deal with through my existence in the matter of health, then I would be grateful and gracefully resilient.  During the summer of my 13th birthday I had an epiphany.  My parents’ friends invited us to spend a few days in their house where I met their adopted young children.  I was under a spell and I recall vividly whispering within myself that one day I will adopt.  I kept that genuine and pure thought in my heart and soul.  A few years later, I was fifteen years old and we were studying the pregnant woman and delivery in my biology class.  For some unknown reasons, seeing in the documentary we watched the physical suffering of the woman in the story caused me to wonder if pregnancy was for me. It was like I was not feeling that this major event in a woman’s life was nor for my body, neither for my energy.

 The Positive Side of Having Endometriosis

Many, many years later when I met my husband, we were talking one afternoon in Big Bear, CA about our lives and I asked him about children.  He was open to everything – no children, biological, or adopted children.  No wall or resistance to face, or to demolish.  It was an open land to conquer.  A few years into our marriage, my husband and I were ready to become parents and to give myself a clear conscience we tried to have a biological child, knowing that endometriosis would be in the way.  But it was like a passage to go through, meaning that to have a biological child first…Nevertheless, adopting a child had already sunk in under my skin, into my bones and my soul for so long that one day I told Tom that I wanted to start the adoption process.  It was as if endometriosis would not stop me from becoming a mother.  In fact, when I think of it, it seems that endometriosis was on my side – since it was the physiological and medical reason that prompted us to file for adoption.

 Pains and More Pains

During all of these years of my endometriosis periods (17 years), I did not want to read about it; doctors told me what I needed to know.  I wanted my mind to be free from comments, so I was only holding onto my own observations, my own experiences, because it was those things that mattered to me.  Each woman has her own journey, but we all meet together when it comes to symptoms.  Now as I am reading an article about endometriosis, my condition and my “whole adventure” can check mark all of the boxes:  extremely heavy periods (8 days), sciatic pains, extreme skin sensitivity, limping, knife- and sword-like pains in the pelvis, etc.  In addition, the year previous to my hysterectomy, I experienced something totally new – a sharp and electrical pain on my right leg above the knee.  At the time I had no clue that it could be related with the endometriosis.  It could come at night, during the day while seated or standing.  There was no real patter.  But at first, it was an extremely sharp and long pain (8-10 seconds in length on the average), followed by an aftershock of mini-pains lasting from a few seconds to minutes or hour.  Two or three days or weeks could pass before another alert. The fact that it was on my right side put my situation into question.  I shared this new unusual pain with my surgeon, and then became flabbergasted when I discovered that women with endometriosis were having similar pains.  Once again, as much as I was at first a little scared of this new pain, and not knowing the cause, I was just a spectator of my own body. I would not lie by saying that I was on the lookout asking myself, “Is it going to come now?” and off and on I would press the exact place in case I could snap the uninvited guest.  For me, the worst case scenario that could happen was to have them in class while teaching students, or in the car while driving.  Once this pain came without a warning while teaching – and it was difficult to hide.

Endometriosis and Work

What is true is that for almost 12 or 13 years, I was able to hide those monthly sufferings.  Medicine worked when taken in high doses repeated several times in 24 hours for several days in a row, and it was just dumb luck that the strongest pains generally occurred during weekends.  One time, it was too much however, and nothing could alleviate the pain.  Yet, I still went to work limping but then had to cancel my class.  I was not able to stand up straight, and when I went home I was virtually “nailed to my bed.”  For close to twelve hours, my ritual motions were at work.  In part, this physical and debilitating condition held me back from accepting a full-time job – it was just too much of a stick in the wheel.  However, I still worked as if I were full-time, teaching classes in different schools around the county, volunteering at a professional organization, and being a mother and a wife, which altogether resulted in a partial burnout due to my work load and then my endometriosis condition presented itself at its worst.  During one Christmas break, I barely moved from my bed as I endured for five days almost nonstop pains which no painkiller could live up to its name.  This excruciating episode made me think about my whole health and the sense I was giving to my life and my work, both of which I cherish tremendously.  Despite my love of teaching, I was at the edge to quit.  Is it over for me as a teacher?  What should I change?  I agreed that my schedule had to be revisited.  I slowly needed to take a step aside and thinking about and observing myself, visualizing what I could change in my professional and personal life.  It took almost three years to be where I am right now, and I feel serene, peaceful and blissful.

 Resolutions and Solutions

First, I needed to change my job location and to shift my teaching schedule from evening to daytime classes.  Second, I knew that I needed to take time for myself, but in a useful manner, to nourish myself.  Thus, I decided to do yoga intensively, and not from time to time as a butterfly moving from flower to another.  I needed more than that.  I completed a concentrated Teacher training program in Kundalini yoga.  This was a huge part of my salvation.  Meditation breathing mantras cold showers physical techniques etc.  Furthermore, I began acupuncture as well.  Indeed, after a seven hours episode on my home’s cold hardwood floor, my husband who, for months even years, was telling me to go to see an acupuncture searched online for one that specialized in gynecological issues.  I went twice per week for almost a year.  Needles and Moxa (a burned herb) helped to warm the womb.  I have always been open to the idea of acupuncture, but now I am a firm believer in its benefits.  I started a year previous to my surgery, and within twelve months, the pains decreased, and the medicines worked more efficiently. I was delightfully enjoying the absence of pains for several months.  In a sense, the physical feeling was unusual because it was waiting for the pain to come like the bell of Pavlov.  My experience with acupuncture has been a remarkable history in pain management.  But did it alter my plans to remove my female organs?  No…my intuition and my doctor’s recommendation were leaning still towards the surgical intervention.  As for the two summer months in 2017, I had no periods and therefore no pain.  At that time, I was approaching the age of 46.  I intimated that my fall season was approaching faster that I could have thought.  One year later, I met with an exceptional surgeon and was at once reassured about the entire procedure.

Day of the Operation

It was 4:00 am on December 20, 2018.  I barely slept this past night.  After seeing the surgeon in July and making my decision about this operation, a part of me felt in limbo; and yet it was a done deal.  I had made up my mind and put a deadline in my brain, and my life would now go on.  Very few people knew about it.  I did not really know what to say, nor what to share.  My endometriosis was so personal, so intimate for so many years, and I rarely discussed it with people.  But yoga continued to be there for me, and during this past year I learned from and practiced yoga intensely – breathing in, breathing out.  And now I am here seated in this cubical office with my husband next to me with a nice secretary asking me to smile for a picture.  That picture is used for internal emails between patients and doctors.  For me, this is not an ordinary picture.  This represents the image that delineates the frontier of the before and the after.  I have a lot of tenderness for this face that stayed up all night, that wondered and also trusted what was about to happen.  I was welcomed by a very warm staff and in seconds, I was in bed with the hospital gown on, all my belongings in a bag, and I remained quite calm and peaceful.  I prayed and chanted softly to myself.  Then came the anesthesiologist – a very nice woman – and to be a bit funny, I told her “make sure that the surgeon removes the nursery but leaves the play room.”  We all laughed and I was transported to the operation room.  The surgery lasted three and one-half hours, and all went perfectly.

Post-op and beyond

I awoke slowly on my own, opened my eyes, and had the impression that two nurses were passing by laughing softly; maybe it was a dream.  It was nice to be back and to feel OK.  Some Jello and some juice to refresh, some massage on my legs to allow good circulation and avoid clots – yes, I am in good care.  The painkillers are working, but I am extremely tired and can barely walk due to the total fatigue.  A wheelchair waits for me at the foot of the bed, and at 3:30 pm I leave the hospital with my husband alongside.  It was an in and out        procedure and I was an in and out patient.  What I can say about my short convalescence and beyond is that every day is better than the previous day.  Just as an anecdote, for Christmas Eve, we were having twelve family members over for dinner and I was able to remain seated at the table for the entire meal.  I had 18 days of recovery time before going back to work.  I stayed mainly in bed, walking slowly around the house and increasing the duration of these strolls as the days went by.  Eventually, outside strolls began, along with the increased walking speed.  The first three days after the surgery were extremely crucial, taking time to get up from bed, using mainly the leg muscles, drinking a lot of water both day and night, watching the four bandages on my scars. I also did not eat too much, since my physical activity was reduced – mainly soup, fruits, and a little bit of meat.  I do believe that being laid down only on my back (it was impossible to do otherwise) was the best remedy to assist the healing.  It took me almost 8 weeks before I was able to turn onto my side in the bed, but the body knows and not once during those weeks did I make a false movement while sleeping.  Of course, I was not able to carry anything during these weeks, and I did not try to.  This is one of those moments when you realize how the body works; so much strength comes from your abdomen.  My intellectual attention remained fairly active as I was able to work seated in bed or at the table.  I went back teaching, and the first week was very hard to stand for my three hours class; it was as if I were being pulled down by abdomen.  I opted to sit on a regular basis during class.  I was, throughout this period of time, in touch with my surgeon who was giving me recommendations, or just listening to what I was experiencing.  This contact with him has been essential to me.  Time and rest during the day were a tremendous help in my recovery and to my return to teaching.  I will not omit that my parents were at my side taking care of all the attentive needs – taking care of the house, driving me to work, carrying my purse and teaching materials, etc.  Flesh needs to heal, the entire body needs to heal, and a new equilibrium must be found since I am now in my fall season.  Patience with grace and compassion to ourselves is the principal key, like being present honoring this body that is doing the rest of the healing on its own. Each day is better than the previous.

A Brand New Life

When I saw my surgeon, my first question was “Was it the right decision?”.  He could not approve more as four huge endometriosis cysts, polyps, and fibroids were found, and according to his words “I had a very interesting anatomy.”  I could not be more satisfied and relieved. A little bit over four months after the surgery, my health and strength are now very steady and back to normal but I was feeling 90 percent of my shape after two full months. I can notice it when I carry grocery bags that my energy level is higher and higher in my day to day activities and no more pain above my knee. The body tells you right away when to stop because literally you can go no further physically. For nearly two months now, I go back twice a week to the acupuncturist and take herbal medicines to reduce my hot flashes.  But overall I am pain-free in my back, belly and legs.  I will not hide that from time to time I have migraines (mild on average); however, I observe that temporary headaches are coming back (it was mainly migraines for most of the past 15 years).  I drink some water and wait for an hour, and it will be gone; and if not, I take a medication.  As time and patience are two important keys to returning to a wonderful normal life, I have also learned to receive help. My parents stayed with us for two and one-half months.  I learned to freely accept their assistance and care for my family and me.  In a more ordinary time, I would have declined but I was told to take it very easy. It touched deeply my heart because for the very first time in my life, I was able to let myself be and acknowledge my vulnerability. I am and feel so grateful to my parents…often we are grateful for positive outcomes, but during throughout this process, my gratitude grew exponentially for them; I also acknowledge my very kind students, my patient husband, daughter, my very dear friends and the last but not least my surgeon.  Mind, soul and body work together. A long time ago, when I knew that menopause would be the answer to silence my endometriosis, I was already anticipating, accepting and embracing  that new chapter in life – Menopause Here I Come!  I feel wonderful to be a menopausal pain free woman and like would say Barbara Marx Hubbard, I feel wonderful to be  a “Regenopause” woman. It is like a rebirth.

This life experience of being born with two uteruses, then to lose one ovary and live with endometriosis helped me tremendously to appreciate time, regardless of whether experiences are good, challenging or excruciatingly difficult.  Yet during all these years, I have grasped off and on the moments to take a distance and feel how peaceful it is without any pain and how this internal calm sea is so serene, and so joyful.  I am in agreement with enduring and enjoying my life.  This awareness is like a shot of energy for my body, soul and mind.  For me, it is as if the moment you awaken the Kudalini energy at the base of the spine, and it rushes up into your whole self like waves of plentiful fireworks.  I feel alive – not because of the absence of pain, but because of the awareness of my wellbeing.  It is amusing that for so many years (and even now), I am attracted to old style baskets for decorating any room in the house.  I collect them like I collect ideas, desires, and wishes, and some will become true projects, or life projects, because we trust in ourselves. We, as women, know that we are capable to handle the journey that will make us stronger despite the challenges and the down moments. Endometriosis would not stop me from being a woman, a mother, a wife, a teacher and above all, entirely alive. No words can replace the experience.  I am in deep solicitude, compassion, and empathy to every woman going through that journey right now.

“Breathing in, I calm my body. Breathing out, I smile. Dwelling in the present moment, I know this is a wonderful moment.” Thich Nhat Hanh.

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