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The pain of living with endometriosis
Endometriosis is characterised by lesions on ovaries, fallopian tubes and the pelvis linings and it is thought to possibly affect 10% or more of women and some of its causes are unknown. It can cause pelvic pain and infertility, among other symptoms. PHOTO/FILE/COURTESY/INSIDER.COM
What you need to know:
- In 2019, Anne was diagnosed with endometriosis. Although she had lived through so much pain, the worst she felt was when the doctor told her the condition is incurable.
- Although anonymously, Anne shares her story hoping it will be a wakeup call, especially for many who are facing the same symptoms.
During our conversations as young women, we talk about and share ideas on a number of things, including our periods. One day, while having such a conversation during our lunch break, one of us spoke about her abnormally painful periods. Anne, a 20-year-old university student said because of the unbearable pain, she had gone to hospital for further tests and had been diagnosed with endometriosis at the age of 16.
“I started my period at 13 years of age. I would be told that the horrible cramps, pelvic pain, vomiting and at times being unable to get out of bed was the normal during one’s period. I would also feel pain while urinating, was always tired and even when I was not menstruating, I would often suffer from sharp pelvic pain. As I got older, the pain increased and this is when I realised it was not normal and sought medical help,” Anne recounts.
When she went to see a doctor in 2019, all she wanted was medication to stop the pain. But after several tests, the doctor asked her to call her parents before he would release the results. This is when she knew that maybe the situation was more serious than she had thought. On receiving the results, Anne says her body froze for a moment, especially since she did not know what this condition was.
“The doctor gave my mother the results, saying I have endometriosis. I listened as he explained what this condition was but all I was waiting for was the moment he would prescribe medication to end the pain. I was mortified when he said the condition has no cure and the only solution was to give me painkillers that I would take for the rest of my life,” she says.
What it is
Endometriosis is a condition where the tissue that normally lines the uterus grows outside of it, often on other organs in the pelvic area. This can cause pain and heavy bleeding, among other symptoms.
According to Ann, life was not the same again, both at home and school. This diagnosis affected her physically and emotionally.
“Even after the doctor prescribed medication to relieve the pain, being a stubborn teenager, I did not take the drugs as prescribed, leading to even worse pain. Sometimes, I would even black out during lectures. My diet had to change as well because I had to avoid dairy products and red meat in order to keep the symptoms in check,” Anne adds.
Anne also worries that she may never be able to conceive and because of this and feeling as though she is a burden to her family and friends, she suffers from episodes of depression and anxiety.
“The possibility that I may not give birth to my own children scares me. And since the doctor said this might be hereditary, I fear that if I do have children, I may pass this on to them and I dread the thought of any of my children going through such pain,” says Anne.
Treatment
Dr Joseph Nsenge, a gynecologist, says treatment to manage endometriosis can differ based on the severity of symptoms and whether pregnancy is desired or not.
“It is true that some prescribed treatments affect the fertility of the sick person but young people that have not lived so long with the disease for it to affect the uterus have better chances of getting pregnant. We prescribe medicine that would not affect one's plans of conceiving,” Dr Nsenge says.
“There are hormonal drugs that can be prescribed for endometriosis patients to pause their menstrual period for about six or 12 months. And for older people that are done with giving birth or those that are not interested in getting pregnant, there are options of either removing the uterus through surgery or disconnecting the nerves that supply the uterus to stop the pain,” he adds.
According to Dr Nsenge, there are no specific causes of endometriosis documented yet but there are some theories as to what could be the causes of the disease.
“The only advice I can give anyone experiencing any of the symptoms is to seek medical advice as soon as possible,” he says.
Symptoms
According to the World Health Organisation (WHO), some people with endometriosis do not have any symptoms. For those who do, pain in the lower part of the stomach (pelvis) most noticeable during menstrual periods, sexual intercourse or during urination. Some other people have trouble getting pregnant. Others may experience heavy bleeding during periods or between periods, trouble getting pregnant, bloating or nausea, fatigue and depression or anxiety.
Anne says with time and a lot of support and counselling, she has been able to accept her fate and gradually learnt how to live with the disease. She takes her drugs as prescribed to reduce the pain and surrounds herself with friends that give her emotional support.
Lifestyle changes
Warm baths, hot water bottles, and heating pads can give quick relief from endometriosis pain. Over time, these lifestyle changes might also help:
Eat right. Research has shown a link between endometriosis and diets that are low in fruits and vegetables and high in red meat. Some experts think the high amount of fat in meat like beef encourages your body to produce chemicals called prostaglandins, which may lead to more estrogen production. This extra estrogen could be what causes excess endometrial tissue to grow.
Add more fresh fruits and vegetables by making them the heart of your meals. Stocking your refrigerator with pre-washed and cut fruit and vegetables can help you eat more of both.
Exercise regularly. There are a lot of reasons exercise is a great way to manage your endometriosis. Working out encourages your heart to pump blood to all your organs, improve circulation, and help nutrients and oxygen flow to all your systems. People who also exercise may have less estrogen and have lighter periods, which can help improve their symptoms of endometriosis over time.
Manage stress. Researchers think stress can make endometriosis worse. In fact, the condition itself might be the cause of your stress because of the severe pain and other side effects. Finding ways to manage can help you ease symptoms.
