Cyclically, there have been instances of extreme hypoglycemia which I mostly just conclude is endometriosis related as it correlates with my cycle to the T. There have been instances when the hypoglycemia has left me perilously faint in public. Nowadays I carry a glucose tab to fix this emergency should it occur at the wrong time and place. On the flip side, this is another of my indications that my flow is here and this may last through the cycle. This is often accompanied by cravings for sugary or oily foods.
I am currently not sexually active, but back then when I was, endometriosis would affect my sex life because of dyspareunia- or what the layman refers to as painful sex. In the past I was fortunate to have a long time medical boyfriend who understood this and was supportive- adjusting accordingly. It is hard to explain the same to other men making me shy off sexual activity and relationships altogether.
Now I understand why the psychologist was called on board on the material day when hell broke loose for me. It is never normal. The brain suffers a blow – nasty headaches and general malaise are proof. Mood swings and irritability have characterized my persona for a long time though I have learned to manage my emotions. Remember this is also a side effect of the medication. At some point before my surgery, endometriosis symptoms were adverse and due to my ignorance, the tracking of these symptoms was poor so all I remember of my past cycles is the pain. All I knew was long painful periods. I was unaware of the association with other conditions. But after my surgery, the awakening began, I started understanding endometriosis. In addition to the enlightenment, a long remission followed the surgery.
The Side Effects
The burden of drug side-effects and drug dependency is heavy with endometriosis. Sometimes I am not sure what is harder to deal with, the endometriosis or the side effects of the treatment plans. Every drug that is consumed has a side effect, a cost-benefit analysis needs to be done. Archetypally, I have in addition to this suffered dependency to pain medications that have CNS action. It is not strange to find me conjuring non-existing symptoms to get that strong painkiller that gives a high and a calming sedating effect. I may as well have used surgery medication in the process. On the other end are drugs whose side effects are harmful, affecting other bodily functions, systems, and organs.
I became a hypertensive at the age of 27 years for various reasons (I have an autoimmune disorder) but the endometriosis compounded the situation. I am now on two drugs to manage the high blood pressure: a beta blocker and an angiotensin-converting enzyme inhibitor (ACE). Remember these too have side effects. The ACE has left me with a chronic cough whose treatment is best with syrup containing codeine which is very addictive. I also suffer from drug-induced peptic ulcers from non-steroidal anti-inflammatory used to manage inflammation and pain from endometriosis. To counter their effect I have to take the NSAIDs with proton pump inhibitors (PPIs) to protect my stomach from further irritation by reducing stomach gas production. Only God knows the long-term effect. Common short-term effects are constipation worsening my endo triggered constipation. Regular antibiotics used to treat the occasional infections makes me susceptible to yeast infection as it alters the normal flora in my system. I always have an antifungal at hand should the situation move to yeast infection. I am mentally depleted and fatigued 24-7; it takes a lot of internal push to get going but the energy levels are mostly so low and fatigue always looms.
Progressively I have learned to live with endometriosis. I doubt I can properly weigh any of these symptoms as better or worse. I treat myself more often than not as it saves me time spent in the ER and money paid in for consultation as I am in between jobs and do not have a medical cover.
Through the Endometriosis Foundation of Kenya Whatsapp group, I have met fellow women, young and old alike, some with shared backgrounds all affected by endometriosis. I interact with and encounter women suffering similar and disparate forms of the condition. I get encouraged and encourage fellow sisters, I inspire and get inspired, I get tips and share tips. I get first-hand experiences from others and I’m able to compare services and treatment plans. We share doctor’s experiences. We also have endometriosis experts who walk us through the maze of the condition as different situations arise. I have learned new concepts. One of the greatest lessons I have learned from the group is about the importance of diet in managing endometriosis; the foods that boost endometrial tissue growth both inside and outside the uterus cavity and those that suppress this estrogen-dependent activity. From this group, I am now proudly off milk and dairy products and have more daunting tasks through diets and exercises which I am confident I shall achieve.
The biggest challenge I have experienced is access to specialized health care while in between jobs. Dealing with flares, monitoring progress, accessing treatment and lifestyle changes all come at a cost and this can take a toll on anyone whether or not one has a proper medical plan. But like any other terminal condition, the dangers of catastrophic expenditure are rife for women living with endometriosis, and especially those not gainfully employed or struggling to eke a living. Secondly, drug addiction requires close monitoring, proper management of treatment and rehabilitation. On infertility, I am not affected but the reality is with us.
Anatomically, my coccyx (the tailbone of the spine) was also not spared, and this has adversely affected my back and childbearing process in one way or the other. I cannot sit for long, and though rare inflammation of the coccyx and neuralgia causes unbearable pain requiring hospitalization and physiotherapy.
Fortunately for me, I have been blessed with two children. I had my first child early in my life and was able to conceive and deliver my second child after the endo-surgery. The pregnancy was however closely monitored.
Finally is the challenge of adhesions from the surgeries. I am counting about 5 surgeries in addition to a caesarian section and an appendectomy I’ve had. The scarring affects organs manifesting through pain, organ effect and bodily functions. I must say that I have in the recent past enjoyed being in remission, however, the situation is gradually deteriorating and reverting to previous critical stages. I will soon be require to go for a review.
I would commit a travesty of justice if I concluded my story without identifying policy gaps in the management of endometriosis.
i) Make specialized care for endometriosis affordable and accessible
ii) Research widely on management of endometriosis and treatment. Remember many organs are eventually affected and the condition is debilitating.
iii) Research on genetic predisposition and association with other autoimmune disorders.
iv) Funding of research and building the capacity through partnership with research institutes and medical institutions.
v) Proper categorization of endometriosis as a debilitating condition requiring specialized care to avoid misdiagnosis and resultant deteriorating.
vi) Aggressively research on estrogen specific to the Kenyan woman.
vii) Regulate reasonable adjustment at work place to accommodate endometriosis patients during a flare and long term therapy that my affect their ability to carry out normal duties and redeployment to a more accommodative position.
viii) Separate disability leave from sick leave
ix) Early diagnosis can help prevent infertility from untreated endometriosis.
x) Health workers should be trained in new guidelines and protocol in the management of endometriosis.