A Typical Scenario – You head to the gynecologist for an examination and some tests. You tell him or her that you and your husband have been trying to have a baby for months, but you can’t seem to get pregnant. You also mention that for as long as you can remember you’ve suffered with painful periods, a very heavy menstrual flow and discomfort during sex. You wonder if these symptoms and your inability to get pregnant are somehow related. Your gynecologist schedules you to have a laparoscopy to check for endometriosis. You have the procedure and as you wake up after the anesthesia wears off, you hear these words “You have endometriosis”. Is this a scenario you can relate to? This is very similar to what I went through, except I am not in the process of trying to start a family yet. Currently, I have no idea if I have infertility issues or not. But I understand all too well about the realities of endometriosis. I was diagnosed with the disease a few years ago.
What is Endometriosis?
Endometriosis is a disease that affects millions of women and girls all over the world. This chronic and often painful condition involves tissue much like the lining inside the uterus that sheds during menstruation called the endometrium, growing outside the uterus and other organs in the pelvic region. This tissue ends up developing into lesions or growths that build up over time, causing pain and scarring. The growths will shed just like the normal endometrial tissue does inside the uterus during a menstrual cycle. Since this occurs outside the organs, internal bleeding occurs because these growths have no way of really escaping the body, unlike the blood and tissue that escape a woman’s body during her period.
Common symptoms of endometriosis include painful and heavy periods, pain during intercourse, fatigue, digestive problems and infertility. According to the U.S. Department of Health and Human Services, research has shown that endometriosis may be the cause of other symptoms or health issues, such as allergies and chronic vaginal infections. However, the most common symptoms are known to be painful periods and pain during intercourse as well as infertility. Some women have no symptoms at all.
You’ve Been Diagnosed. Now What?
Your doctor or gynecologist has diagnosed you with this chronic and sometimes debilitating disease called endometriosis. You may be struggling with questions and options of what to do about it. As someone who also has faced these questions and still has tough decisions to make about continuing treatment, I understand how stressful it can be. Here is my advice on what a woman should do when she has been told she has this painful disease:
First of all, don’t panic. Endometriosis is treatable, and symptoms usually go away once a woman reaches menopause. Although there is speculation that endometriosis may increase one’s risk of developing certain cancers, researchers as far as I know, haven’t been able to prove that the disease itself causes cancer in women. If so, I believe this is a rare occurrence. I’ve also never heard of anyone dying from endometriosis.
Do your research. Find out what treatment options are out there, and see what information is available on the internet. Since you’re stuck with the disease for now, you might as well learn everything you can about it.
Keep the lines of communication open with your doctor. Make sure you voice your concerns and questions to your doctor or gynecologist. Also make certain your doctor explains in detail to you about all the different treatment options that are available. Some examples of treatments are birth control, laparoscopic surgery and hormone therapies like Lupron, that force the body into temporary menopause. He or she should help you choose the option that is right for you, judging by the severity of your endometriosis, your lifestyle, and whether or not you have any plans on starting a family. Side effects of treatments should also be considered. If the side effects of a treatment are worse than your endometriosis symptoms, then that particular treatment is not for you. If your doctor does not take all this into consideration, and does not talk you through all of the options that would suit you, then perhaps it is either time to find a new doctor, or get a second opinion. It is your body and your life; therefore it is ultimately your decision. A doctor should be able to understand and respect that, while still giving you proper advice or guidance.
Talk with others who have the disease. It can be a confusing and stressful time deciding on what to do about your endometriosis, so talking with others who also have the disease can help. Find out what they are doing about it, and compare notes. If you don’t know anyone who has the disease, then check out the endometriosis message boards or join a support group. Message boards are a good way to find out what others are saying about treatment options and how these treatments are affecting them. Experiences can vary between people, but it is good to know ahead of time what you can possibly expect.
Share your findings with your doctor. You may come across some doctors or ob/gyns who do not believe certain ailments or symptoms have anything to do with endometriosis. If you find information somewhere that suggests otherwise, you should print it out and show it to your doctor. Some people may choose certain treatments based on the amount of symptoms they have, and if you believe that your endometriosis is the cause of many ailments you suffer with, and there is reasonable evidence to suggest you are valid in these assumptions, then this information will help you and your doctor in making a decision about treatment. If recent research has suggested that some health issues are linked with endometriosis, your doctor needs to be aware of this.
Do your part in the fight. After you’ve made your decision as to what treatment option is the best for you and you’ve had the proper support from others, whether they are doctors, family, friends or other sufferers of the disease, you may want to give a little something back. There are organizations and foundations that are dedicated to researching endometriosis and finding a cure, as well as gaining a better understanding of what causes the disease. The Endometriosis Foundation of America is one of them. Padma Lakshmi is one of the co-founders of the organization. Many know her as the beautiful host on the reality competition show Top Chef. She is among the millions of women in the world who have to live with the disease, and in my opinion, is a wonderful spokesperson for it, as she has increased awareness about it by sharing with many her own personal story of endometriosis. If you are interested in making a donation, you can do so by clicking here.
So if you’ve been diagnosed with this bewildering disease, take some comfort in knowing that you are not alone. There are millions of women who like you, are also suffering with it, waiting to connect with someone else who understands. Take a look around. They’re everywhere. I’m one of them.
U.S. Department of Health & Human Services, “Endometriosis: Frequently Asked Questions”, Womenshealth.gov
Endometriosis Association, “What is Endometriosis?” Endo-Online
“Endometriosis cancer risk”, Medical News Today
Endometriosis Foundation of America