Isabel García, 51, loves dogs, nature, and kind people. She dreams of living on a farm in a charming, remote village by the mountains or in a cottage near the coast. A communication consultant, she was formerly a journalist and has also worked as a Spanish lecturer at a couple of universities in Sydney.
Isabel got her first period at 10, and over time, things started to get worse.
“At 11, in my Summer camp with the Scouts and Guides, I already remember staying one night in the infirmary because of my severe cramping. Then, it was always a pain to get my period. It was always painful. I remember missing school trips, exams, basketball matches, scout weekends… and later the same at high school and at University, although for some periods they would put me on the pill and I was slightly better (I still had cramps but not so bad),” she told Financial Express.com.
Every month, Isabel continue to struggle with excruciating period pain thinking “its normal.” “For many years I suffered very painful periods, my bleeding was excessive, I ended up in ER because of the painful cramps on many occasions (especially while at University), I had low iron levels… My period was every 22 days mainly, but irregular at times too,” she revealed.
In 1991, at 17, she had a laparotomy to remove a cyst in my ovary and was told “you should have children early because if you are having so much pain now and cysts, it is likely that it will get worse and your chances of being a mom will decrease” but didn’t get a diagnosis beyond “painful periods and cysts”.
“In 2012, after trying for a baby for a while, I heard the word endometriosis for the first time at the gynecologist clinic for the first time. She listened to my story of pain and she said I could have that. She ordered a MRI and a ca 125 test. The results looked quite clear to her and said I should have surgery to stop the pain and improve my chances for pregnancy. In 2012 I had my first laparoscopy and endo was removed from ovaries, outside the womb and bladder. They said that they removed one tube.”
She was finally diagnosed with endometriosis in 2012, at 38.
Till 2014, her symptoms continue to be the same but her pain was not just during periods, they were more constant throughout the cycle.
“Since there was no success for pregnancy I went for IVF but after some tests they told me I should have another surgery. In 2015 I had a laparoscopy and endometriosis was removed from ovaries, tubes, bladder and rectum. They found a streak of the tube I was told was removed in 2012 covered in endometriosis. They also diagnosed adenomyosis and said that, after trying IVF and getting my child, they recommended an hysterectomy to be pain free,” she told Financial Express.com.
“I felt much better after surgery recovery and, after a cycle of induced medical menopause, I started with IVF. Three unsuccessful cycles. Then, IVF with donor eggs and got pregnant but lost the baby when I was near the third month of pregnancy. I gave up motherhood.”
For 26 years, Isabel kept on thinking that she is a weak woman as everyone experiences the same period pain every month.
“In the 26 years it took to get a diagnosis the main challenge has been believing I am a weak person because “all women have period pain” and I am just not strong enough to cope with something that is normal. Your self-esteem suffers a lot in that sense and, in my case, that resulted in trying to always show a good face, a smile and try always my best… so, while I was not in pain (and even in pain) I pushed through very hard to become a very good student, worker, volunteer, sports,” she said.
Endometriosis affects roughly 10 percent (190 million) of reproductive age women and girls globally. According to the World Health Organization (WHO), endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and make it harder to get pregnant. Endometriosis can start at a person’s first menstrual period and last until menopause.
‘Endometriosis is usually diagnosed late’
Endometriosis is a chronic disease in which tissue that resembles the lining of the uterus grows outside the uterus, on the ovaries, fallopian tubes, and other pelvic organs.
Dr. Nidhi Rajotia, Sr. Consultant – Obstetrics & Gynaecology, Artemis Hospitals, unlike uterine tissue, it cannot be expelled from the body, leading to inflammation, pain, and scar tissue.
“Symptoms are severe cramps, chronic pelvic pain, heavy menstrual periods, painful intercourse, and infertility. The cause is not known, but genetic, hormonal, and immune factors may play a role. Though there is no cure, symptoms are treated with pain relief, hormone therapy, and surgery,” Dr. Rajotia explained.
In India, approximately 42 million women have endometriosis, but the figure could be higher because of underreporting and unawareness.
“Endometriosis is usually diagnosed late, and most women live with the condition for years before getting appropriate medical care. Worldwide, endometriosis is one of the top reasons for chronic pelvic pain and infertility, which directly affects the health and daily functioning of women. Awareness, early detection, and improved treatments are essential to managing the disease well,” she said.
‘I was so relieved after diagnosis’
After her diagnosis, which came after years of pain, hopelessness and helpless, Isabel felt a deep sense of relief.
“The main emotion I felt once I was diagnosed was relief. I thought: “Good, I was not imagining things and now they will listen to me and I will get treated and everything will be ok”. Sadly the condition is so foreign to so many GPs and even some gynaecologists that, even with the diagnosis, I have felt dismissed many times. So… this is discouraging. It makes you feel really sad and you tend to isolate yourself. I had always been very cheerful and positive but I see this has changed. I have had several episodes of depression since then,” she told Financial Express.com.
Chronic pain and fatigue are the most difficult symptoms to manage, as they are draining and invisible, so she face disbelief from others, including many doctors.
“I am an active person and I love my profession, but being constantly tired means I don’t perform well at work and I get insomnia often and a brain fog that makes it very difficult to concentrate, so I end up with unfinished tasks that I need to postpone and I find it difficult to manage a workload that may seem totally manageable for other people… This causes constant frustration and stress… It’s like a vicious circle, and I feel judged all the time. I try to be understanding with those whose comments imply judgement, because I understand that if you don’t feel what I do it is difficult to understand… but this is exhausting,” she told Financial Express.com.
“Apart from work, my social life is poor now, as I don’t feel strong enough to join many social activities, as simple as going out for dinner or, of course doing what I like the most, which is bushwalking. I had to stop doing bushwalking because the tiredness and pain afterwards is too much so I have to spend most weekends resting to be ready for work on Monday… as work is what pays my bills and I depend on my salary for everything, since I am divorced and I have no help financially.”
Diagnosis of endometriosis includes a combination of history, physical examination, and imaging tests.
“Doctors usually start with a pelvic examination to look for abnormalities. Ultrasound or MRI will reveal cysts or tissue masses, but a laparoscopy, a small surgical procedure, is the only certain method to diagnose endometriosis. It is difficult to make an early diagnosis as the symptoms are similar to other medical conditions such as irritable bowel syndrome or pelvic inflammatory disease,” Dr. Rajotia said.
Most women are diagnosed late, after several years, often because they are lacking awareness and there are no non-invasive diagnostic procedures available, she said.
Diagnosis of endometriosis is usually delayed due to the fact that its symptoms can be similar to other conditions such as irritable bowel syndrome, pelvic inflammatory disease, or urinary infections.
“Most women think painful menstruation is normal, and thus there is late consultation with a doctor. There is no awareness among patients. Non-invasive tests such as ultrasound do not detect mild or deep endometriosis, and thus laparoscopy remains the only diagnostic tool. As laparoscopy is an operation, the physician may not undertake it unless the symptoms are acute. The reasons lead to decades of incorrect diagnosis and distress,” the doctor explained.
To minimize the diagnostic delay, there should be awareness programs that make both women and medical professionals aware of endometriosis symptoms.
“Promoting early gynecological visits for chronic pelvic pain and abnormal cycles can result in earlier detection. Creating non-invasive diagnostic tools such as blood tests or new imaging technologies would facilitate early detection. Doctors should also be trained to notice the subtle symptoms of endometriosis rather than writing off pain as normal.”
Endometriosis symptoms differ in people, although the most common are severe menstrual pain, persistent pelvic pain, heavy bleeding, and intercourse pain. Some women have painful bowel movements, bloating, nausea, and tiredness, whereas others cannot conceive.
According to Dr. Rajotia, the severity of symptoms may not correspond to the severity of the disease, some with a mild case of endometriosis experience excruciating pain, whereas others who have a serious case experience minimal discomfort.
“Symptoms also evolve and worsen with hormonal changes. Since endometriosis develops differently in every individual, treatment and diagnosis are best approached with a customized approach depending on specific symptoms and history,” she said.
What are the most effective treatment options available today?
Isabel informed that she has tried surgery, hormonal treatments, painkillers and, as alternative therapies, acupuncture and reflexology.
“Also, many years ago, Traditional Chinese Medicine. The second surgery in 2015 did improve my general health for a while. Taking the pill masked my pain but once I left it (on several occasions) the symptoms came back stronger. Also, as side effects I had problems with weight management and have very noticeable cellulite, which has an impact on self esteem (especially when I was younger, even though now I still feel very conscious of it and I don’t enjoy going to the beach or wearing shorts or short sleeve tops, as I have it both on my legs and my arms). Hormonal treatments had an effect on my mood and my energy levels,” she told Financial Express.com.
Acupuncture and reflexology didn’t eliminate all my symptoms but helped me feel more relaxed. However, I only had these while I was married and my husband helped financially while I had to quit my job… so that also helped. Now I don’t have the time or money to do that continuously, she revealed.
Endometriosis cannot be cured, but its treatment is pain relief, regulation of hormones, and surgery where necessary. Pain relievers help manage discomfort.
“Hormonal therapy with birth control pills, progesterone, or GnRH agonists decreases tissue growth and pain. Severe cases require laparoscopic removal of endometrial tissue, with an improvement in symptoms and fertility. In very severe cases, a hysterectomy, or removal of the uterus, is contemplated. Changes in lifestyle, such as proper diet, physical exercise, and stress management, can also enhance quality of life for patients,” Dr. Rajotia informed.
Lifestyle changes such as diet, exercise, and stress reduction can reduce endometriosis symptoms. A diet of fruits, vegetables, whole grains, and omega-3 fatty acids decreases inflammation.
Dr. Rajotia also emphasised that the avoidance of processed foods, caffeine, and red meat can decrease pain and bloating. Exercise, including walking or yoga, enhances blood flow and decreases stress, which can ease symptoms.
“Stress can also be managed by meditation or deep breathing, as stress can worsen pain. Lifestyle modifications do not heal endometriosis; they can enhance overall health and make symptoms more manageable,” she said.
‘Do not be afraid to speak up for yourself’
If your discomfort is brushed aside by healthcare providers, believe your body and get a second opinion. Maintain a pain journal, recording symptoms, severity, and triggers to assist doctors in understanding your situation, Dr. Rajotia emphasised.
“Study endometriosis and insist on tests such as ultrasound or laparoscopy. Get support groups to guide and encourage you. Do not be afraid to speak up for yourself, your pain is real, and you deserve proper care and treatment,” she said.
If you have bad period pain, heavy bleeding, or long-term pelvic pain, don’t brush it off; see a doctor early. Monitor your symptoms, menstrual cycle, and pain levels to aid in diagnosis.
“Ask your doctor to refer you for an ultrasound or laparoscopy if symptoms persist. Treat pain with warm compresses, gentle exercise, and a healthy diet full of anti-inflammatory foods. Relieve stress by meditating or practicing deep breathing. Join support groups to share with others who are going through similar experiences. Early diagnosis and appropriate treatment can enhance your quality of life and avoid complications,” she said.