Diagnosed With Endometriosis? 5 Tips To Be Your Best Advocate

March is Endometriosis Awareness Month. Mayo Clinic defines endometriosis as a "painful disorder in which tissue [...] grows outside your uterus." This disease affects roughly 200 million people on a global scale, according to Endometriosis Foundation of America. However, despite this, endometriosis is not the most straightforward condition to diagnose. It can therefore go a lot time as undiagnosed. According to Medical News Today, the diagnosis time for most people who suffer from endometriosis ranges from four to 11 years.

Therefore it's important to make sure that you are your own best advocate throughout your journey. What happens to your body when you have endometriosis and the symptoms you deal with can change as you get older and therefore more symptoms may rear their head. Getting diagnosed with endometriosis is one thing that can really help you feel validated for your pain, but there are still steps you need to be wary of post-diagnosis for this chronic condition.

From proctalgia fugax (painful spasms in your rear) to intense stomach cramps, endometriosis flare-ups can be vast and extremely excruciating — especially when you haven't yet found pain relief to manage it. Campaigns and communications manager for Endometriosis UK, Faye Farthing, spoke to The Independent and mentioned that other endometriosis symptoms can include "pelvic pain [...] irregular periods, pain during or after sex, painful bowel movements," and more. Sometimes, when explaining endometriosis symptoms to others who cannot relate, it can make you feel like you are over-exaggerating the pain. This can leave you feeling invalidated or dismissed over a very real pain you are experiencing, which can put you down at the best of times.

That's why it's important to still have a belief that there is real validity in your symptoms, even when it seems like others around you are struggling to understand. It's this belief in yourself that will drive you to keep going until you arrive at a point where you are offered the right treatment that will better help you manage your endometriosis. When you let the dismissal of others override the real pain you're experiencing, it doesn't get you any closer to managing your symptoms. Whilst it requires a lot of willpower in the beginning, on top of the pain you're experiencing, believing in yourself is the best way to push for more answers.

Of course, seeking medical attention should be your first port of call when enquiring about endometriosis symptoms, especially for an official diagnosis. However, in this digital age, there are several medical experts who also have their own online platforms or medical websites that may share insights that you could use to bring up to your doctor.

For example, if there's a particular symptom you're experiencing and it's explained well online, you can highlight this to your doctor in your next appointment. It gives them a better reference to understand what it is you are referring to. As with anything online, just be wary of the information you come across. Gynecologist Dr. Valinda Riggins Nwadike suggests to Healthline that recommended endometriosis specialist sites such as the Facebook group Nancy's Nook are a great resource. The information you find here could help you when referencing your symptoms to your doctor.

When being diagnosed with endometriosis, the suggestions your doctor may provide for your care to manage your symptoms can, understandably, seem like a lot to take in at once. Bringing a notepad with you to your doctor appointments can be a good way to make sure you can reference back to what was said in your consultation at a later point in time, and give you more space to digest the information. Whether it's a digital notepad on your phone or a physical book specifically dedicated to your health, these tools can help you keep track of your endometriosis journey.

The Endometriosis Foundation of America even suggests writing down questions you may have ahead of your appointment to alleviate the pressure of storing it all in your mind. It's easy to get flustered in appointments on such a sensitive subject matter, so a notepad can help assist you in this area.

Sometimes, it can be hard to speak up and advocate for yourself. If you find that you struggle to talk to your doctor, it can be beneficial to find someone to go with you to appointments. A great support system can be encouraging and used as a resource to confirm your symptoms. It may be hard finding the right people, so look to your best friends and family first. Those closest to you will be more understanding. 

Not only can your support system help you at the doctor, but they can assist you at home when you're suffering as well. For instance, a roommate who you trust can get you a pain reliever when you're not feeling good. A partner can bring over a care package on days when your symptoms are flaring up. Even your family can call you up on bad days to make you feel better. When you have the right people in your corner, you are more encouraged to fight. 

Another great way to build your support team is to join an endometriosis group. There are support groups you can join online or in your community. These groups can help you chat with other people who suffer from endometriosis, so you can compare symptoms or just have an empathetic ear to listen to you talk. For anyone on TikTok, there tons of videos on the app that feature different people talking about endometriosis. In fact, #endomestriosis has over two billion views on TikTok alone. 

Seeing other people openly discuss their journey can help you get through yours. You may even find a great corner of TikTok, where you feel comfortable talking about your own diagnosis and symptoms. The more you talk about it, the better you may feel. You can also join in on any Endometriosis Awareness Month events happening in your community that include fundraisers and marches that may help you find a group as well.