Endometriosis - an invisible disability
Names have been changed.
Clara is a 27-year-old woman who lives with endometriosis on a daily basis. The condition can be so debilitating at times that she struggles to get out of bed.
Endometriosis is a reproductive system condition where tissue similar to the lining of the uterus grows on other organs. It can be extremely painful and cause heavy bleeding. In addition, it can cause severe anxiety, reduced fertility or infertility. Endometriosis can impact the person's ability to walk or stand up. When this happens, Clara is forced to use a wheelchair.
The condition can be so debilitating that it can severely impact everyday decision making as well as the quality of life. Endometriosis can be managed with laparoscopic surgery where a surgeon inserts a slender viewing instrument (laparoscope) through a small incision near the navel and uses instruments to remove endometrial tissue and possibly the old scar tissue through another small incision. Laparoscopic surgery does not cure endometriosis. Rather, it helps to make it more manageable and easier to live with.
After surgery, your doctor may recommend taking hormone medication in combination with pain relievers to help improve pain. Hormone therapy can only be used if you are not trying to get pregnant.
"Hysterectomy with removal of the ovaries
A surgeon may also perform laparotomy. The difference between laparoscopy and laparotomy is that the former tends to be minimally invasive, whereas the latter is considered a major surgery during which the uterus could be removed. Surgery to remove the uterus (hysterectomy) and ovaries (oophorectomy) was once considered the most effective treatment for endometriosis. But endometriosis experts are moving away from this approach, instead focusing on the careful and thorough removal of all endometriosis tissue."
A friend of mine who was living in England at the time had hysterectomy in order to deal with severe endometriosis. She was in her thirties back then, and her doctor did not want to perform hysterectomy straight away. He asked her to wait for a year in case she wanted to have more children. She didn't have any and decided to stay that way, so after a year, she was determined to go ahead. The hysterectomy did help her, but it also resulted in early menopause.
"Having your ovaries removed results in menopause. The lack of hormones produced by the ovaries may improve endometriosis pain for some, but for others, endometriosis that remains after surgery continues to cause symptoms. Early menopause also carries a risk of cardiovascular diseases.
Removal of the uterus (hysterectomy) can sometimes be used to treat signs and symptoms associated with endometriosis, such as heavy menstrual bleeding and painful periods due to uterine cramping, in those who don't want to become pregnant. Even when the ovaries are left in place, a hysterectomy may still have a long-term effect on your health, especially if you have the surgery before age 35."
According to a Mayo study from 2018, some of the health risks may be:
14 percent higher risk of abnormal blood fat levels
a 13 percent higher risk for high blood pressure
a 13 percent higher risk for high blood pressure
a 13 percent higher risk for high blood pressure
The study was done on 2100 women all of whom had undergone hysterectomy, with the ovaries not removed. It should be noted that the Mayo study was using retrospective data (using existing data that have been recorded for reasons other than research), so it's hard to determine whether other factors apart form hysterectomy would have contributed to these health risks.
Therefore, it's important to discuss all treatment options with your doctor such as endometrial ablation (a procedure whereby a thin layer of tissue which lines the uterus is removed - this should only be considered if you are not planning on having any children). The reason why a woman may not be able to get pregnant after the ablation is that the egg needs the endometrium in order to implant itself in the uterus. Pregnancies that may occur after ablation are not normal. Endometrial ablation is not surgery, and your health care professional will use an instrument to reach the uterus through the vagina.
Sometimes endometriosis may affect other organs such as the bowel or ureter (the tube from the kidney to the bladder). If this is the case, a woman may require further surgery in future.
"Finding a doctor with whom you feel comfortable is crucial in managing and treating endometriosis. You may want to get a second opinion before starting any treatment to be sure you know all of your options and the possible outcomes." (https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661#:~:text=Even%20in%20severe%20cases%20of,tissue%20through%20another%20small%20incision.)."
A health care professional should make it clear that there is no cure for endometriosis. Treatment options are designed to deal with heavy bleeding, pain, and infertility. Your doctor should take into account your age, the severity of your symptoms, the severity of the endometriosis itself, and whether you want any children. Please bear in mind that endometriosis could return after the treatment or surgery (with the exception of hysterectomy as it's a radical procedure removing the uterus and/or ovaries.
Clara's major source of anxiety is not knowing how other people, including medical professionals, will react to her condition. In the past, she's come across doctors who did not believe her. The fact that endometriosis is often misdiagnosed and mistreated makes offering proper support and treatment more difficult. Asking for help can be quite difficult, and women with endometriosis can feel quite isolated. Doctors may not take into account how the disease could affect the person in all aspects of their life, including their identity and sense of self.
Endometriosis tends to be quite responsive to herbal treatments. While there is no guarantee, they will not cause any harm, and it's worthwhile giving it a go in conjunction with some lifestyle changes. Herbal treatments tend to be gentle treatments, meaning that it may take some time, for example, a week or a couple of weeks.
Please check ABC Australia for more stories on how women could be affected by a certain reproductive system condition. I have found it a great source of information.
