Adenomyosis

N.B. Story contains graphic description of mensuration as well as expressed violence.

The steam whirls around her body in the small enclosure and the moisture touches her skin with gentle pressure. Below her feet, a pool of bright red water swirls down the drain. Thérèse* leans against the shower wall onto one arm and reaches up into her vagina to feel a squishy, gelatinous mass inside. She pulls on it and the red lump falls in a splat to the shower floor. It sits there and does not readily disperse into the circular metal grate. 

Another blood clot. This one is the size of a loonie. How much longer is this going to go on? Tears from subdued sobs join the water spraying in the shower and cleansing mingles with despair.

Stepping out, Thérèse is in darkness. Her migraine is at a category 5 hurricane and her eyes are stinging from the small amount of light seeping under the bathroom doorway. She dries and dresses with an experienced ability to reduce motion and eye strain. She has practice being almost blind.

Please let the Advil kick in…please, please, please.

Thérèse must be at work today; calling in sick is not an option when the department manager has set a meeting to announce the new reorganization. Thérèse has two home visits to make afterward but she will need to reschedule. If only Theo hadn’t already left for his shift; he could have dropped her off at work. Thank goodness the boys are in secondary grades and are getting themselves off to school. She needs to get out of the only bathroom so they can use it before they leave.

Thérèse lies down on her bed and listens to the subdued sounds that tell her the boys know she has another migraine. She is glad that neither one will use the shower this morning; she isn’t sure the blood clot completely disintegrated before she turned off the water.

Galen pokes his head in first and asks, in a small, hesitant whisper if she needs anything. Darnell joins him in the gloomy shade of the bedroom. Thérèse can’t shake her head ‘no’ so whispers back “no thanks.” The boys wish her well and quietly let themselves out of the house. The front door sticks and needs to be pulled tight so Thérèse steals herself for the small bang it will make. She begins to cry, soundlessly rocking herself on her bed.

Just last month, during her performance review in her director’s office, Thérèse endured the most embarrassing moment of her career. Standing up from the chair to run to the washroom, Thérèse was mortified to see the seat covered in crimson red and her skirt stained as well. Her female boss grasped the situation immediately and handed Thérèse an emergency pad and tampon. When Thérèse returned, her boss had rescheduled completing the evaluation until the end of the week. Allowing Thérèse time to see her doctor, yet again.

Again, and again and again -- ongoing symptoms that seem to have no etiology. And no solution. Just a litany of complaints.

For as long as Thérèse can recall, she has had problems with her menstrual periods. Thérèse remembers being so enthusiastic about this coming-of-age occurrence. In grade 5, when the girls and boys in her Catholic school separated for ‘the talk,’ Thérèse returned home in tears. She confronted her mother with virtuous indignation and asked why she hasn’t been told about periods “like all the other girls?” 

Her mother had looked perplexed.

“Thérèse, you are my first born. I didn’t know you needed to know at this age! I’m sorry.”

Within the week, Thérèse’s mother bought her pads, a belt and books on sex as well. She only asked that if her daughter had any questions, to speak to her first. They practiced with one pad and the belt and when Thérèse had her first period at 14 years, she deftly rolled the soiled pad into a nifty ball that stayed together when deposited into the garbage. She was, confidently, on her way to adulthood.

By the time she is 16, Thérèse is popping Frost 222s (with codeine) every cycle to deal with the headache and Midol for the cramps.

Doctors, the gurus of modern medicine, tell Thérèse “those are just stress headaches. Totally unrelated to your periods. Here, try this…,” they say and then hand Thérèse a requisition, a referral, a prescription. She is fast becoming the equivalent of a drug addict; shooting up with papers and medical tests; stereotyped as a seedy hypochondriac.

Biofeedback—Thérèse fails the university study (?!); uses the wastepaper basket in the test room to vomit on the tenth session.

Relaxation therapy—sexual fantasies of the professor with the deep voice reciting the mantra on the tape.  

Acupuncture—curious placement of all twenty plus needles for the excruciating pain in her head. Her plantar fasciitis is cured, though.

Hypnosis— Thérèse thinks she goes under but won’t surrender to a man telling her what to do; self-hypnosis requires self-discipline.

Psychiatric—pill deals of the century and they’re legal.

Talk therapy—30 years X 2 times a month X $100 per session; Thérèse racks up the equivalent of a major lottery win seeing counsellors. Let’s not talk about my father anymore, ok?

Thérèse is giving it her all in a shotgun effort to exorcise the scourge inside her head. She doesn’t actually try exorcism. As a lapsed Catholic, she watches The Exorcist in terror and feels Lucifer squeezing her brains out. The migraine prevents her from turning her head 360 degrees.

The best medicine is living with her boyfriend (Theo). It’s the 70s and The Pill regulates the periods. What happens during the three weeks with no breakthrough bleeding, no cramping and no headaches, is the magic mushroom of the cycle. Life is just so much fun!

Theo and Thérèse marry and have two sons. Breastfeeding means that Thérèse doesn’t take the pill for several years. Life is lived around, in between and through Thérèse’s nightmare as if threaded through a tight corset. Little boys will play on the floor beside their mother lying on the sofa with a cold facecloth over her face--in a room without light. They eat finger foods set out to nibble on and drink from juice boxes. Meals are fast food; picked up on Theo’s way home from work. It feels as if they are living with a negligent mother for most of the month. There is no release from Thérèse’s purgatory on earth.

As Thérèse ages, the periods are even more debilitating. They last longer.

“My back hurts constantly. I feel as if I will give birth to an elephant; my stomach is so distended with the cramping. I have bleeding and headaches for three weeks now,” Thérèse tells the doctor. She knows her female physician can hear the whining in her voice. Thérèse is figuratively on her last tampon-shaped straw.

She is told to keep a diary of her headaches. The diary shows the pattern as migraine headache without aura. Trials with new meds for migraines are tried; Thérèse returns to mega doses of the liquid gel form of Ibuprofen, extra strength, that works the best for her. Her kidneys are the least of her concerns.

Depression is the constant devil on her shoulder. Another psychiatrist, another prescription. Thérèse takes the little white paper with the word ‘Prozac’ home to discuss with Theo.

“For god’s sake, take it. It feels like we’re walking around on eggs here.”

The little pastel green pill has immediate effects: Thérèse’s brain is filled with cotton balls and she cannot think or act with any spontaneity. Her emotions are deadened --for some ten years. If she isn’t numb with the drug, she is volatile and explodes with language the boys have been told never to use. Theo is the object of her demeaning attacks.

“You should just divorce me” screams out Thérèse but Theo is an honorable man who rides out the cyclone, again and again. Thérèse holds onto her inner self with the emotional fingernails of her stubborn nature.

The anvil of her next period hangs over all of their heads. Thérèse tries not to cancel birthday parties or Christmases or attending her sons’ karate or basketball games. She uses flex-time to hold full-time employment; it’s just not in her chosen career of education. The only week without pain is the week she makes amends and gathers her resolve to live a life.

Galen, the eldest son, is married to his high school sweetheart on a summer day that breaks all known heat records in their city. Thérèse wants to die. Her period is in the last days of this cycle so thankfully light enough not to create concerns of visible spotting on her clothing.

Her migraine, however, is off the chart and unrecordable on the Richter scale. Even her eyelids are like fires on her eyeballs; her eyelashes trace molten lava below her eyes. Thérèse hides in the shade of the golf club facility.

Medical investigations are tried (again in some cases.) Thérèse has two exploratory laparoscopies, an endometrial ablation and an ovariectomy of the more problematic left ovary. The ovary is removed; it is healthy according to the latest specialist. Failure is discarded with the blood she is constantly losing. She simply can’t eat enough raisins to get the iron she needs and develops anemia.

Thérèse gets a call of support from her sister, Bethany. Two years younger and the sibling who should’ve been a medical doctor, Bethany makes an excellent diagnostician.

“I think I’ve found out what you have! Go to the website for the Mayo Clinic and look up adenomyosis.”

There is it, on the screen, a listing of symptoms that definitely seems to fit a prognosis of adenomyosis!

But the gynecologist is not convinced. The superior wisdom of the doctor and the affront to her status is palpable.

“There is only one way to test for adenomyosis. It takes a hysterectomy. Only then can the uterus can be examined for the disease.” The implication is that no one would have surgery to remove a healthy organ.

Thérèse inhales a deep (and never calming) breath and tersely tells the gynecologist, “either you remove my uterus or I will stab myself in the abdomen with a knife and take it out myself.”

Six weeks of recovery from a total hysterectomy (that other ovary, as ‘healthy’ as the left one had been, the fallopian tubes and the cervix…may as well, eh?) Thérèse relishes in the outcome of the surgery—no abdominal pain, no back pain, no headaches! Best of all, at 54 years, no mensuration. Just instant menopause!

Examination of the uterus shows the requisite 18 points plus of endometrium tissue embedded in Thérèse’s womb. Way to go, Bethany, love you!

Forty years of womanhood and a lifetime of taking the survivalist path to living.

Today, a chance to write those stories Thérèse carries in her heart. To laugh with her grandchildren. To live a life that is diminished but oh, so much more rewarding.

Regrettably, in a darkened back room of Thérèse’s consciousness, there will always be the futile question: what if…I had never had adenomyosis?

_________

*All proper names have been changed.

To readers of this story: I wish to thank Felice Noelle for spotlighting inherited diseases and the courage to share her journey with others (Rosy Red for Remembrances.) And to acknowledge Riel Rosehill for her story, TMI, and the revelation that this topic is not taboo.

As well as myself, my maternal grandmother, maternal aunt, mother and two of my four sisters have had forms of uterine disease. Not one of my female cousins on my paternal side have disclosed this type of disease. It doesn't prove inheritance but it seems too coincidental. Today, adenomyosis and endometriosis are better understood and have more options for diagnosis and treatment than in the past. 

To women everywhere, I wish you health.

L.H.