Invisible not Imaginary: Endometriosis

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the membrane which lines the abdominal cavity, the peritoneum. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones. Endometrial cells in areas outside the uterus (endometriosis) are also influenced by hormonal changes and respond in a way that is similar to the cells found inside the uterus. Symptoms of endometriosis are pain and infertility. The pain often is worse with the menstrual cycle and is termed dysmenorrhoea. Endometriosis is typically seen during the reproductive years; it has been estimated that endometriosis occurs in roughly 6–10% of women. Symptoms may depend on the site of active endometriosis. Its main but not universal symptom is pelvic pain in various manifestations. Endometriosis is a common finding in women with infertility. (Educalingo 2019)

SRHR Adventures embarked on a journey to collect “My endo stories”, in an effort to break the silence surrounding endometriosis. Hence, persons living with the condition were invited to share their stories with us. We hope that the stories collected would touch at least one life. Further, that persons will stop taking debilitating period pains for granted by seeing it as a natural part of ‘womanhood’. Moreover, we hope that healthcare providers will take the complaint of painful periods seriously.

Story #1 – I considered those minor in comparison to the relief of no period…

My period started just before I turned 12. Initially, they were mildly painful, tolerable. However, by the time I was around 15 years old, I noticed that the pain had started getting worse and I started needing to take Advil to ease the pain. I thought it was just painful periods, even though the pain gradually was increasing over the years. I really started to notice something was wrong when I started university and the pain suddenly became very intense to the point that I would miss classes during those first two days.
The pain was SEVERE. I would walk to the bathroom bent over in pain and nausea. Doing number two took forever because it was so painful to complete the process. So much, that apart from the bloating that came with the period, I had discomfort from the urge to defecate but couldn’t due to the pain, until my period had ended.

My medication dosage went up and I was on painkillers throughout the day. I literally spent those days home in bed, sleeping the pain away, waking up to take more painkillers and going back to sleep. I also felt exhausted and drowsy. Sometimes I had a fever. The tears of pain were real and my parents and siblings were so concerned about the amount of pain I was in. Ibuprofen was such a close friend and I dared not be without it every month. This continued for months that became years.

Looking up the causes of dysmenorrhea, I realized that there was a possibility that I had endometriosis. I visited an ob/gyn, and she agreed that it was a possibility, and ultrasound revealed cyst/mass, however, she never put me on any treatment. Fast forward a few more years. The pain still continued, increasing. During those years, I stepped up to diclofenac 50mg twice daily, then 75mg twice daily. Also started having chronic pelvic pain, and I wondered if I had a UTI.

When I started working, every month I would call in sick due to my periods. I couldn’t bear the pain, sometimes I felt like I would pass out. Visited another ob/gyn. She agreed it was endometriosis and started me on lupron monthly. That first month of no period was sooooooo relieving, however, the side effects of the injection, hot flashes, palpitations, however, I considered those minor in comparison to the relief of no period on the injection each month. I was also advised to conceive asap due to findings on repeat ultrasound. However, that injection did not last because of the numerous side effects. So back to popping pills. Many times I don’t share why I was ‘sick’ because some persons genuinely believe that if someone says she stayed home because of period pain, it will be scoffed at as if ‘it’s just your period’. But only those who have experienced it know. I do believe that a cure is out there somewhere, which I’m currently looking into, including diet changes. Until then, the fight continues.

Story #2 – It is like chills run down my spine when someone belittlingly tells me how endometriosis is only bad periods.

It is like chills run down my spine when someone belittlingly tells me how endometriosis is only bad periods. The floodgate of memories and suffering follow and I have to swallow the injustice so many endo warriors have encountered while trying to defend our invisible suffering. Invisible, because most of the time no one can see the crippling pain and exhaustion wrapped around us. It takes years to become numb with pain and then again only a few seconds to leave you crying in a fetal position.

Ten years ago I got my first false diagnosis for my abdominal pain. I always knew I was suffering from endometriosis but no one listened to me. I used to arrange long weekends off at home because the period pains immobilized me. Slowly pain became daily and was aggravated by various reasons together with bloating. There was no pain relief that alleviated the pain. I went from doctor to doctor for years and tried different pills but nothing worked.

Eventually, a day came I woke up from a bathroom floor vomit in my mouth. I had fainted of pain. This became normality; urinating, bowel movements, eating, drinking, moving felt like I was being stabbed all over my body, it was outrageous. I used to overdose on painkillers. I had hospital admissions for pain relief, fever, difficult nausea and for severe inflammations, endometriosis caused to my organs. Life settled slightly soon after my first surgery and diagnosis I had been begging for ten years. The pain was still there but mostly at an acceptable level.

Couple of years ago the same cycle started again. A year ago I had first pneumothorax that led to a cycle of them and difficulties to breathe. Bleeding causes bad coughs followed by blood clots and my right lung doesn’t expand as it used. Medical imaging found out my diaphragm is ruptured, the liver has lesions and it is herniated to the thoracic cavity, pressing my lung. No one knows how my lungs are but there is pain all over my chest. I thought I had hit the rock bottom until we started hormonal injections. I lost my immunity for a long time, there was a time I didn’t have white blood cells in me. Side effects together with my illness took me to my lowest.

Every day has turned into a battle, whether physically or emotionally. Being left undertreated and neglected my needs in Saudi last year. There was not a single competent surgeon who understood the complexity of this, I was always ahead of them. Back in Finland, it has taken ages to visit all my surgeons from different specialties and make plans when all of us can be present in the same operating room. All this caused unnecessary suffering and waiting. And I’m trying to stay hopeful even though they are not optimistic about the results.

I have been torn apart by this illness but it has taught me more than probably anything else in my life. There is nothing shameful to say how constant pain has left me depressed over the years. Hopelessness and loneliness as no one else sees or knows the battle with chronic pain and fatigue not to even mention the rest of the symptoms. I know I’m so much stronger now than ten years ago in my early twenties but I worry those young women who have to go through the same neglect for years until their suffering are being taken seriously.

Endometriosis isn’t just bad periods or pain during periods. It’s a very devastating and resilient illness but I want to believe I’m resilient too. We are resilient.

Story #3 – After the surgery, I thought I would now have a normal life but little did I know that I was just given a first class ticket to hell.

A lot of us go about our daily lives not knowing about many illnesses that could prevent us from having the ‘normal’ lives we seem to take for granted.

At the age of eleven, I had my first menstrual period. I must admit it was very much painful as most or all women would know. The following month I was lucky enough not to experience that awful feeling again but I was also worried that something was wrong. I spoke to my mother about it and was told that it was normal. This trend continued for some time. For one or two months I saw my period and the next month or two after, it would not show its ugly face. I often had mixed feeling about my cycles since I was told by my female classmates that they saw theirs each month. The months I did not see my menstruation were higher in number than the months I saw it. I became extremely worried and spoke to my mom about it once more. She then agreed that it was abnormal and took me to our family doctor. We were told that my experience was quite normal and as I age my cycles would become consistent. I lived for years thinking that this stage would pass.

By the time I was fifteen, nothing changed except for the pain. With or without seeing my menstruation the pain was there. It was not just there but there and much more excruciating. When it did came the bleeding was so heavy I was using three sanitary napkins within an hour. My body became weaker and my tears were longer. I began to complain much more often because I knew that something was terribly wrong. My visits to the hospital were always the same. They were frustrating and useless. Ibuprofen became my friend. I should say an enemy which I kept closer than my friends. I hated pills as much as I hated being in pain. The ibuprofen worked for a few minutes the most (could be hours but in my mind it was minutes).

After completing high school I immediately began my tertiary studies at the University of Guyana. I had to leave my comfort zone and take up residence elsewhere that would make attending UG much easier. Without my parents who already knew of my pain, it was difficult because I did not want to reveal my situation to my external family who I was now living by. The pain would be so much I would scream for help and I had no choice but to explain to my family what I was experiencing. My aunt told my mom and I that she experienced the same thing as a teenager but she found relief when she got her first child. I was nowhere close to having a child and thought that I would remain like this for a long time.

At age eighteen I started visiting doctors once more only to hear the same thing I heard years ago but now they had added information for me. I was told that I needed to gain weight, have sex often, have a child and change my diet. Feeling frustrated again, I did not take any of their advice. Ten months passed and I did not see my menstruation. On the eleventh month, it came and I was relieved. It was finally here along with its sidekick pain. However, after eight days the two were still keeping me company and that was very strange. The bleeding was extra heavy. I remember walking downtown and the blood was running down my legs. I took a taxi and made a mess of the back seat. The driver was very upset but I paid for him to get his car cleaned. Along with the heavy bleeding came an abnormal temperature. My friends took me to the health center and I was sent to do many different tests and an ultrasound. Everything was normal as usual except for a few cysts on my ovaries.

My mother then took me to our family doctor who looked at my ultrasound and told my mother I needed to undergo a surgery asap but he would be unable to do it since he was leaving the country for some time. He then sent me to a colleague of his but my mom did not take me to his colleague on that day. It was a Friday and she thought we could wait until Monday because she had to take my dad to the hospital then too. On Sunday I was extremely tired and decided to take a rest. A few minutes after going to bed, I was unable to feel any part of my body. I was numb so I screamed for help. My family came to my aid and I was rushed to the hospital.

The next morning I was operated on. That was a few days before my 20th birthday. I was in a haze and did not ask the doctor many questions. My mom was busy taking care of my dad in another hospital because he was diagnosed with cancer. She did not get to see the doctor and did not ask much questions too. All that we knew was that the cysts were removed.

After the surgery I thought I would now have a normal life but little did I know that I was just given a first class ticket to hell. The pain was back and the same issues I had prior to the surgery were back in less than a year. I had gotten my first job as a teacher but keeping up was hell. I would feel very fatigued each day.

The nauseous feeling, the headaches, the weakness, the cramps, the contractions, the weaknesses and pain in my legs and arms, the lower back pain, the pulling of my organs and the loss of appetite were all there. The devil had sent his most faithful servants to torture me. I was constantly taking days off from work and was unable to give my all to the job so after four years I left the teaching profession.

Sometime before my four years of teaching ended, I returned to the hospital where I did my surgery to get a better understanding of what happened to me. I was told that the doctor was no longer working at the hospital. He had returned to his country of birth. I was given my medical file which stated that I was diagnosed with endometriosis. I visited other doctors because the pain was unbearable but they all said I was misdiagnosed yet still they all failed to come up with an explanation for my condition. Since 2011 I did not receive any treatment for my endometriosis. I have done a lot of research and I know that I was not wrongfully diagnosed.

I still experience pain each month. I learned that I have been experiencing retrograde menstruation over the years (got this information from my family doctor). I have given up my job and a lot of the fun activities I once enjoyed.

Endometriosis changed my life in many ways. I speak a language many will never understand: the language of Excruciating Pain. I spend most of my days in bed but I am still fighting to keep whatever I have left of my personality alive.

I am an endometriosis warrior and being strong is what I do best.

Story #4 – Removal of my left ovary and tube did not stop the pain…

At the age of thirteen the question that many had asked my mother ‘she turn young lady yet?’ Finally happened. Every day until the age of 24 has been accompanied by excruciating menstrual cramps every month. Within two years after the ‘big day’ the pain had gotten worst, I was excused from school every month because I couldn’t bear the pain that was accompanied by diarrhea, vomiting and some months excessive bleeding. Luckily my school uniform was a dark color but as a young woman, it was still embarrassing. Some students even accused me of having a miscarriage/abortion, but it was just my monthly visitor.

My mother took me to a General doctor because paracetamol and ibuprofen didn’t relieve pain for more than two hours. At the doctor visit, I was told that the pain is ‘common’ and I would ‘outgrow’ the pain. I was prescribed more paracetamol and was encouraged to exercise more. That was the moment I knew it couldn’t be the truth, none of my other friends felt like they were dying when their period came. Every month I would die and be resurrected on the third or fourth day, that’s not normal. So as I went through my monthly drama while attending secondary school I tried to put more emphasis on my physical education sessions, the next time my period came no pain so I rejoiced. I continued exercising until my next cycle and pain again, worst than the prior. It had returned with a vengeance and once more like every month at school my father came to collect me so I went home to roll on the floor until I’d fall asleep after taking too much of what the doctor recommended, paracetamol. My mom said ‘maybe I need a clean out, that’s what I need’. She gave me senapod liquid to drink after my period and this routine continued for months but the pain was still there. I became a doctor too, I researched some home remedies for period pain so I started eating garlic and drinking it as tea and ginger tea sometimes. That didn’t help, all I did was vomit more.

At the age of 17, I started working and had to report sick at least one day of the month because of the excruciating pain. My supervisor noticed my overflow one month and she recommended a pill named Midol. Midol has been a great help to me for about 12hrs, I’d use at least 3 packs in one day. It helped with the abdominal pain but that did not suffice for the back pain, bloating, nausea and vomiting so I started drinking Andrews. All this was done so I can be present at work or any activity. Moreso I didn’t want to surpass one sick day per month, which was bad enough. The rumors of miscarriages continued in the workforce and I took whatever pill I could get to help ease the pain. I was grateful that my supervisor was understanding. I was never late or absent from work if I was it was automatically the cause of my period.

When I was 18 I visited another doctor that told me it was ‘gas’. At 19 I went to another doctor that stated that I would ‘outgrow’ the pain and it would ease after my first child. The pain never left me and I don’t have any children yet. By the time I was 21 something additional started to happen, pelvic pain at random times. This pain first was only evident during ovulation, then it happened anytime when I was anywhere. Suddenly the pelvic pain caused me to fall one afternoon while doing laundry. The following day I visited the doctor at a clinic in the community. I followed my instincts and told her that I believed that It had to do something with my womb, using all her medical terms she said it had nothing to do with that and treated me for bacterial vaginosis. I never took the medication because I had done my reading, it wasn’t that. Nevertheless, the pelvic pain stopped for a while, giving me a break for no more than four months.

Early 2017 the period pains got worst, I thought it was worse than the pain of childbirth. I gave up on the public healthcare system and started saving to visit a gynecologist. The pelvic pain got sharper and my periods got worst, I was 24 then and with the severity of the pain, I knew that something was terribly wrong. I prepared my mind to hear anything from the doctor, this included infertility. In July 2017 after my visit with a private gynecologist and receiving the results from an efficient radiologist, a cyst had grown in my left ovary that could only be removed via open surgery. In an effort to remove the cyst my left ovary would have to be removed. I didn’t want the surgery, I wanted pills to treat it and decrease it, taking pills had become part of me but this couldn’t be done. I left the doctor that Saturday afternoon, not surprised but hurt by the incompetence of the previous doctors. I didn’t cry because I was losing an ovary but because this could have been detected before, through one of my regular visits.

I had plans for the next two months but I was told recovery would be 8 weeks. As it neared the date of my surgery the pain got worst and the result was me fainting. A few hours after my surgery when my doctor visited, she informed me that it was a chocolate cyst and my left tube was so inflamed that it had to be removed as well. She after proceeded to inform me of endometriosis. There is no cure for this condition so I’m on treatment. A combined pill that I consume every day for the next nine months to stop by the period from coming. Removal of my left ovary and tube did not stop the pain though, I still have some pelvic pains but not as often or severe but I’m scared of what will happen when I come off the pills. Every doctor visit since my surgery I’m reminded that the cells spread and I should try to conceive sooner than later because it can be a challenge for someone with my condition and now one ovary. I am now 25 years old and 7 months post operations.

Endometriosis is known as the invisible disease but it is certainly not imaginary!

By Dr. Patricee Douglas MBBS, MSc.

Reference:

EDUCALINGO.,2019. Endometriosis [online] [viewed February 10th 2019]. Available from: https://educalingo.com/en/dic-en/endometriosis