After fighting for a diagnosis for over three and a half years, I was finally diagnosed with endometriosis just months shy of my 16th birthday through laparoscopic surgery. Since my first diagnostic surgery, I've had two additional surgeries to remove countless amounts of endometriosis, scar tissue, and adhesions, and have been on more hormonal treatments to try and maintain my endo than I can count on my fingers. I may only be 21 now, but I have a lifelong battle ahead of me with this illness.
Living with a chronic illness like endometriosis is an ongoing battle, and a battle that I will continue to fight until a cure is hopefully found someday. However, I am fortunate enough to be surrounded by an extremely supportive team of doctors as well as a family and group of friends who understand the degree of my symptoms and daily struggle with this chronic pain condition. In honor of the month of March being Endometriosis Awareness Month, I wanted to highlight some truths that most girls and women that have been diagnosed with endometriosis know to be true:
1. The road to a diagnosis is never easy.
I say I am fortunate to have only gone three and a half years through the process of getting a proper diagnosis, while it takes some women over a decade. The process of getting diagnosed is extremely difficult due to a number of factors, including the fact that it can only be diagnosed through surgery, most doctors are not educated enough about the disease itself, and many women are afraid to seek help for their symptoms. Proper education about endometriosis must be provided to both doctors and the general public so that more women do not go years suffering from their pain because of how hard it is to get a proper diagnosis.
2. Endometriosis is not just a painful period.
For most women, endo pain does not just mean a worse than average period. The pain associated with endometriosis is enough to keep you in bed for days, crying out in pain, with no pain relief in sight. The pain lasts nearly 24/7, not just during your periods, and interferes with your daily life to the point where you can't feel like a normal girl anymore.
3. Treatment for endometriosis is not as simple as taking the pill.
As of right now, the only way to properly remove endometriosis is through excision surgery. Hormonal treatment is often supplemented to manage the pain and delay the need for more surgeries. However, finding the right hormonal treatment is an extremely difficult process and varies for each woman. Often, they range in the severity of side effects, as many put your body in a state of menopause, resulting in hot flashes, hair loss, weight gain, nausea, abdominal pain, and many other debilitating side effects.
4. Endometriosis is a very misunderstood disease.
Many young women are afraid to come out about their illness for the fear of others being uneducated about it or judging them for having a gynecological disorder. But the truth is, an estimated 200 million (!!!) women worldwide suffer from endometriosis, with so many more struggling to get diagnosed. So many fear that they are alone in their diagnosis with nowhere to turn for help or comfort, but the community of women and young girls suffering from endo is so strong, and there is a place for every endo sister to turn to for help and advice!
5. Having endo makes it extremely difficult to live a normal life.
Whether it's getting through work or school or simply maintaining a normal social life, having endometriosis makes it very difficult to do all of the above. The constant pain is enough to make you never want to leave bed or take your heating pad off, let alone leave the house and try to act like a normal person. Many women who suffer from endometriosis find that they miss out on a lot of experiences or are held back from being a normal girl because they cannot do everything the normal person can without being in pain or fatigued.
6. Chronic pelvic pain is not the only symptom.
Often, there is more to endometriosis than just the chronic, debilitating pelvic pain. Other symptoms of endometriosis can include but are not limited to: general abdominal pain, extremely irregular periods, pain with sexual intercourse, nausea, infertility, digestive issues, among other symptoms such as headaches, fatigue, muscle cramping, and so much more. Endometriosis affects the whole body, not just the pelvic region!
7. Endometriosis has the ability to grow anywhere in the body.
Personally, through my three laparoscopic surgeries, my surgeons have found endometriosis not just in my pelvic region, but also on my appendix, small intestine, colon, liver, large intestine, among other places. I have met other women who have had endometriosis on their lungs, diaphragm, and fallopian tubes. The ability for the endometrial tissue to grow on different organs can result in extremely detrimental symptoms and can also result in infertility in many cases.
8. A hysterectomy is not a definitive cure for endometriosis.
A common misconception about endometriosis is that having a hysterectomy will cure endo and the symptoms it causes. However, this is known to not be true, and it is still possible for symptoms to exist after the procedure.
9. Having endometriosis is extremely costly.
It is very difficult to not cringe at the pile of medical bills most women with endometriosis have. Between the extremely costly surgeries and some of the hormonal treatments costing upwards of $1,000 per injection (which are monthly!!!), it is very difficult for many women to afford the basic care to treat their illness.
10. There is currently no known cause or cure for endometriosis.
While doctors and researchers worldwide are doing their best to discover more about the disease, there is still no known cause for the disease or a cure. While many believe that it may be genetic, there's still no definitive answer. In order to discover more about this debilitating disease, more research needs to be done, which requires more funding and awareness worldwide!
11. Heating pads are a girl's best friend.
When the pain medication doesn't work anymore, most women who suffer from endometriosis turn to alternative methods of pain relief. This can include baths, acupuncture, diet alterations, among many other methods. However, you'll never meet an endo sister who doesn't own a heating pad. It's probably used almost daily and it's a lifesaver for those awful pain days.
12. Endometriosis is an invisible illness.
There are typically no physical signs to the naked eye that a woman suffers from endometriosis. However, it does not mean that their illness is fake or insignificant in comparison to those with visible illnesses or disabilities. Often, people diminish the pain associated with endometriosis or its effect on the body because it cannot be seen or because those who suffer from it are so good at being strong and pushing through the pain. However, this does not mean that every woman who suffers from the condition isn't a badass who fights like hell to not let this condition ruin their life.
This post is dedicated to every endo sister in the world who is currently or has fought their battle with this debilitating chronic illness. I want to remind you that you are not alone in this fight and that together as a community, we need to raise more awareness for this disease and fight for a cure.
You are strong, you are a badass, and you cannot let endometriosis win this battle!
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