For women with endometriosis, self-advocacy is a life skill needed in every stage of endometriosis. As Jenneh Bockari RN said, just getting a diagnosis for endometriosis takes self-advocacy.
Endometriosis, also known as “endo,” is an under-researched medical condition that affects 1 in every 10 women. A woman can spend up to five years struggling with endometriosis pain without getting an appropriate diagnosis. The symptoms of endometriosis are often overlooked and termed ‘normal,’ ‘psychological,’ or ‘exaggerated.’ It takes persistence, grit, and assertiveness to get an accurate diagnosis.
Self-advocacy is vital for anyone with a chronic illness, especially for women with endometriosis. Pain is often overlooked in women than men, making it more challenging to get a doctor who listens and takes your symptoms as something beyond the normal female cycle.
The first rule to keep at the back of your mind should be that “your symptoms are not normal,” pushing you to make yourself heard and not give up until someone who matters listens!
What is self-advocacy?
Self-advocacy, in plain terms, means speaking up for yourself. When it comes to health care, it means speaking up about your symptoms, sharing your opinions about treatment options, and knowing every update about your condition.
Self-advocacy makes you actively involved in managing your health and being informed of every decision concerning your condition. It means you understand and approve every medical decision concerning your health, which is crucial because it gives you control over an uncontrollable situation and can impact your physical and mental health positively.
Brief view of Endometriosis
In my post about easy tips for living with endometriosis, I went into more detail about its definition, types, causes, symptoms, diagnosis, and effects, but here’s a quick view of endometriosis.
Endometriosis occurs when the normal endometrial lining of the uterus that sheds during menstruation is found on other body organs (usually in the pelvic cavity). During menstruation, these linings also thicken and shed blood into the abdominal cavity resulting in scarred tissues, cysts, and even cancers.
There is no exact cause of endometriosis, but there have been different theories, such as a theory that says endometriosis can be caused by retrograde menstruation. Retrograde menstruation generally implies your menstrual blood flows backward through the fallopian tube and into the abdominal cavity instead of through the vagina.
The symptoms of endometriosis can include:
- Painful periods
- Severe back pain
- Heavy bleeding
- Abdominal pain
- Painful bowel movement
- Painful sex
Although these symptoms may vary individually, it usually results in physical and mental exertion, especially when not appropriately diagnosed.
The known countermeasure for endometriosis is a minimally invasive laparoscopy, a surgical procedure to remove the abnormal tissue, which isn’t a 100% guaranteed procedure because these tissues can grow back as well. There is also the hormone treatment that either puts you in a pregnant or menopausal state for a long time.
There are several other ways to live with and effectively manage endometriosis, including self-advocacy, which I will discuss in more detail below.
Self-advocacy tips for women with endometriosis
As I stated earlier, self-advocacy is a life skill for every woman with endometriosis because it is an under-researched condition that also presents distinct symptoms. If you are still wondering why you need to be your self-advocate, I’ll just have to refer you to my other post (why you need to be a self-care advocate).
Be ready to change doctors.
If you ever feel that your doctor isn’t listening enough or giving you the right treatment options, it is entirely okay to seek another doctor. It doesn’t matter if your current doctor is a specialist; what matters is your trust in your attending physician.
If you don’t trust your doctor, it will be harder for you to express yourself or trust their opinions.
Sometimes your doctor might reach the end of his expertise, and you don’t have to stick around because of loyalty or conscience when you can pursue more learned specialists to manage your symptoms. Appreciate the doctor for his efforts, but express the need for you to seek out other avenues for yourself.
Get updated on recent changes.
Knowledge is vital when you are advocating for yourself. Follow up on recent updates in research from credible sources about your condition because your doctor might not have time to keep up to date with these field changes, especially if it’s not a specialist.
When you are abreast of these updates, you can write them down in a notepad and take them to your next appointment. Wait for the doctor to bring it up; if he doesn’t, don’t keep quiet. Tell him about your findings, and if possible, ask him for sources that can confirm the data and suggest your readiness to try the new treatment option.
Research alternatives to medications.
Most treatment options suggested to you will be medications; as good as they are, you might be skeptical about constantly taking them for a prolonged period. You can seek out other alternative therapy you can use to manage your symptoms.
Make sure your doctor knows the alternatives you are taking, especially if it involves herbal medications, because of contradictions that may occur from drug-herb interaction in your system. You want to ensure that any herbal medication you take is safe to use.
Don’t be ashamed or feel guilty for speaking up.
When it comes to endometriosis, we know that some of the symptoms might be embarrassing to describe. You might not want to tell your doctor that you feel pain anytime you poop or have sex with your partner. If it helps, you can go in with someone or something that makes you comfortable.
Aside from that, you should talk about all the body changes you are experiencing, no matter how little. Say it out if you think your feet twitch anytime you take a specific medication. No symptom is insignificant. Even if it’s something that is not recorded in any article, you should still say it.
Monitor your body changes and record them.
Keep track of the changes in your body. Have a note to record how you feel before and after your medication, including during and after your period. If you have a particular symptom and your doctor gives you a treatment option to monitor it, you should also keep track of the symptoms.
If possible, add dates and other lifestyle habits like your diet and exercise.
Be expressive about your symptoms.
Talk about your symptoms, and don’t mind if it seems like you are offloading on your doctor. If you think the doctor isn’t taking notes or taking you seriously, I’ll refer to my first point: “Be ready to change doctors when needed.”
When you don’t understand or get confused with the barrage of information your doctor gives you during an appointment, it’s okay to ask for a recap and probably take notes.
Get a specialist.
When managing endometriosis, it is best to seek an endometriosis specialist instead of a general gynecologist. A specialist is focused on the specific condition, will constantly be up-to-date with new treatment options, and will take you more seriously than regular doctors.
Have a solid support system.
Sometimes, having a solid support system around you makes the struggle with endo more bearable. It might involve educating them exclusively and explicitly so they fully understand what endometriosis means. When they do, they can follow you to doctor’s appointments, take note of symptoms you might overlook, and lend a shoulder when you need one.
Be ready to seek a second opinion.
This is slightly different from changing doctors, although one can view it as the same. Some people return to their initial doctor even after seeking a second opinion because the diagnosis or medical advice might remain unchanged.
If your doctor gives you a treatment option or diagnosis that doesn’t sit well with you, you can request a second opinion from a specialist. The hospital might help with this, or you might want someone you picked out yourself.
Be confident and trust yourself.
Lastly, be confident in yourself and trust your decisions. You know your body better than anyone else, and no one can be more interested in being healthy than you are. I trust you will make good decisions when you have verified research materials and are well-informed about your condition. And you should trust yourself too.
Dealing with endometriosis is a lot for anyone, and I applaud every woman who has to experience intense pain that people quickly write off just because it doesn’t show physically. Explaining an ‘invisible’ condition to your boss and the need to take sick leave with suspicious eyes staring back at you is heartbreaking.
The worst part might be talking to a health practitioner about the severity of your symptoms and getting written off as an ‘exaggerated’ complaint. Nevertheless, I hope you get the strength to stand up for yourself and not give up until you are heard.
You’re not alone in the fight, and an army of supporters is rooting for you.
How long have you been dealing with endometriosis? Do you know someone with endometriosis? What has been your biggest challenge with self-advocating? And what has been your most significant winning moment?