The Mighty Logo

Just Diagnosed With Endometriosis? Here's a 5-Step Plan to Help

So you just received an endometriosis diagnosis. First of all, I’m so relieved for you. I know full well how long you have been in pain, how often you have been dismissed, and how frequently you have been disbelieved to get here. I know how many pain charts you had to look at and how they never accurately represented what you were experiencing. I know how many different specialists you have likely seen to rule out a million other possible diagnoses. I know how many different medications you have had thrown at you to manage your symptoms, which probably didn’t help and came with a host of side effects to exacerbate an already untenable lifestyle. I know how many days you’ve probably had to call in sick to work or tell your friends you couldn’t hang with them. And I know the sheer frustration and desperation you experienced alone, in the silence of your thoughts, wondering if you were ever going to get any relief from your condition.

Now you have a label for what you are experiencing and probably a more complete visual of what parts of your body have been impacted by the endometrial lesions. But what’s next? What do you do with this newfound information? Here are five things to consider as your next steps.

1. Ask your doctor questions about endometriosis — lots of them.

It’s important that you understand your diagnosis thoroughly. Ask your doctor for details about exactly what they found that led them to your diagnosis. Find out how well educated they are on the condition and how current they are on the latest treatment options. You want to be armed with as much good information as you can get and know that your medical team knows what they are doing. If they are not willing to have this discussion or give you the information you request, consider finding another doctor who will. As the patient, it’s your right to advocate for yourself and the doctor works for you.

2. Do some homework to learn more about endometriosis.

If you are anything like me, I want to know everything about anything relating to a diagnosis. I want to know if it’s genetic, what causes it and how it spreads. I want to know what things can potentially exacerbate the symptoms. I want to know what the typical treatments are. I want to know if there are lifestyle changes I need to make or if any non-medical supplements or strategies can help me manage my symptoms safely. And most of all I want to know what to expect. Uncertainty is an instant anxiety trigger for me. Having answers at my fingertips helps me feel less helpless and hopeless about my condition and gives me some confidence in being able to have more nuanced, fruitful conversations with my medical team.

3. Join an endometriosis support group.

One benefit to social media that has really been helpful to me has been the connections I’ve made with online communities of individuals who are living with the same conditions as I am. It’s a place to go for advice, information, and most of all, the empathy of others who fully understand what you are experiencing. There’s really nothing else like it. Friends and family can support you in a lot of ways, but if they haven’t been through the myriad symptoms that come with a condition like endometriosis, they simply can’t relate.

You can join our Endometriosis Support Group right here on The Mighty to connect with others who understand.

4. Educate your friends, family, and anyone else who needs to be informed about living with endometriosis.

This is controversial because I understand that not everyone deserves details about your medical condition. I’m not saying divulge private information, but it may be useful to all parties involved to know that you have this condition and how it may impact your relationships. It is also an opportunity to build stronger connections with your loved ones, and it gives both you and them a chance to articulate your needs so that they can support you when you might not be able to ask clearly.

5. Grieve and process your feelings about your new endometriosis diagnosis.

While finally getting an endometriosis diagnosis can be a huge relief, it can also come with some grief. Grief over the time and quality of life you have lost while trying to get the diagnosis and anticipatory grief over the ways in which the condition will inevitably affect your future. It can be really helpful to find a therapist to work with who is trained in counseling those with chronic illnesses or other medical trauma. If nothing else, it’s a safe place to vent any pent-up frustration and anger and to have those feelings validated and normalized.

A couple of my favorite resources for up-to-date information on endometriosis are endometriosis.org and EndoWhat.org. Both are active across all social platforms and are working on research, advocacy, and legislation for those living with endometriosis. Remember, endometriosis doesn’t have to define you. Knowing what it is will hopefully empower you to seek out the treatments and tools you need to live a full and meaningful life.

Getty image by Rudzhan Nagiev.

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home