When she was 16, Karin Gaudet-Asmus’s periods were so painful that she missed school days every month. Around the age of 20, symptoms such as nausea, vomiting, bloating, diarrhea and extreme fatigue also occurred.
Doctors blamed her complaints on allergies, irritable bowel syndrome and polycystic ovarian syndrome, and prescribed medications that did not help. In her thirties she had difficulty getting pregnant and had two miscarriages. It was only when, at the age of 37, she had to have her gallbladder removed due to an infection, that she received the correct diagnosis: endometriosis.
What is endometriosis?
Sun 2 to 10 percent of women have endometriosis, a condition where the uterine lining (the endometrium) grows not only on the uterine wall, but also outside it. Consider, for example, the abdominal cavity, on or in the ovaries, between the uterus and the bladder or in the intestinal wall. This tissue also bleeds around menstruation, because it reacts to the hormone estrogen – which is why people of childbearing age in particular suffer from it. Especially around menstruation, these tissues can cause (unbearable) pain – and sometimes lead to infertility.
Although endometriosis is common, not much is known about it. On average it takes seven to ten years before someone gets the correct diagnosis. According to scientists, this is slowly changing, thanks to more research and a growing number of surgeons specializing in cancer minimally invasive gynecological surgery, better known as MIGS. The doctor examines the patient with a small instrument (laparoscope) through the abdominal wall and removes any unwanted tissue. There are also surgeons with this qualification in the Netherlands.
During the six-hour surgery to remove Gaudet-Asmus’ many endometrial lesions, tissue was excised from her abdominal wall and around her ovaries, appendix, colon and diaphragm. Almost immediately her symptoms disappeared. Yet her relief was tempered by anger at the delay in diagnosis and treatment. ‘This disease has taken so much of my life. I could have done so many things instead of staying in bed month after month,” she says.
Incorrect information
Endometriosis is routinely misdiagnosed, even by gynecologists, says Iris Kerin Orbuch, a MIGS surgeon in Beverly Hills. One reason is that the symptoms overlap with those of other diseases. People with endometriosis often suffer from painful and heavy periods and pain during sex, which can also occur with fibroids, for example. Bloating, constipation and fatigue can be caused by irritable bowel syndrome.
She also points to the attitude of doctors who dismiss painful periods as normal. They often don’t consider endometriosis as a possible diagnosis because they assume the patient is exaggerating. “The women are told that there is nothing wrong with them,” says Kerin Orbuch, even though their symptoms point to endometriosis.
Treatment for endometriosis
After a correct diagnosis, doctors often try to lower estrogen levels, mainly by prescribing birth control pills. In mild cases, this may be enough to reduce pain, says Donnellan.
If hormone therapy doesn’t work, doctors often recommend alblation, a treatment that involves burning lesions with a laser or heat device. Despite this, the tissue often grows back afterwards, says Megan Wasson, Gaudet-Asmus’ MIGS-trained surgeon. ‘Endometriosis is almost like a weed. If you just burn the leaves, the root will be left behind and it will come back.”
That’s why Wasson considers excision, a surgery to remove all traces of the disease, as the gold standard – especially when the disease is advanced or attached to other organs.
Not always successful
Even if a person receives the best available treatment, the surgery is not always successful. Many people, like Gaudet-Asmus, experience enormous improvement after a procedure, but others have to go under the knife repeatedly.
Also, after an excision, many people require extensive physical therapy or other treatments to counteract the years of tissue growing attached to and deforming organs and the pelvic floor. The most important thing for people with endometriosis is to speak to an expert for the best treatment advice, says Donnellan. “It’s never a bad idea to seek out a MIGS surgeon, even if you don’t end up needing surgery.”
2023-10-07 13:35:35
#endometriosis #treatment #delayed
