In this section you will find several resources to help you on your endometriosis journey. It includes a variety of topics including:
- links to articles, podcasts, videos, webinars, and other sources of information and advocacy
- information about navigating insurance
- links to topics specific for teens, infertility, pregnancy, and LGBTQIA+
- topics such as writing your personal medical history, things to pack for surgery/hospital, and so forth
- resources for those in the UK and Australia
- and more!
Choosing your surgeon
Contemplating excision surgery is a big step, but an even bigger one is hiring the surgeon you’ll use. You know that the typical OB/GYN isn’t the best candidate, and you’ve scoped out the list of member-recommended surgeons on Nancy’s Nook
Managing the relationship with your current doctor
Try to think long term. You may be irritated at your doctor right now, but you will need someone to follow you medically. If your current doctor is going to be that person, you need to navigate a way to keep the relationship cordial.
Personal Medical History Template
A list of current medications and a concise medical history is good to have when visiting any provider. It can help assure that any pertinent information your provider might want to know is available. Here is an example of a brief but thorough medical history.
Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis
Why am I here? I’m not a doctor, not a nurse – have no medical degree whatsoever. By trade I’m a lawyer and a filmmaker and by necessity in the last few years, an activist. I’m here because we’re in a care crisis with endometriosis.
Endometriosis: The Patient Perspective (an AAGL presentation)
Endometriosis: The Patient Perspective (an AAGL presentation)
Giving Women Control of their Healthcare: from the APPG
The WHAPPG has found that women are not treated with dignity, are not provided with sufficient information about their treatment options, and are not told about treatment side-effects appropriately when counselled about their gynaecological health.
UK Resources
After surgery, you may not be told about your surgery findings at discharge. When you are discharged, you will often be told you are no longer under “their care” as an inpatient, which means the day unit’s care.
Before Surgery
Surgery can be scary, but being prepared can help. Below you will find some resources to help you prepare:
After Surgery: What to Expect
Recovery can take a while and looks different for everyone. For most people with endometriosis, they have suffered with symptoms for many years.
Articles and Website Links
Below are several links to articles and websites to help you learn more about endometriosis.
Tips for Dealing with Insurance
Insurance policies are all different, so please be sure to check with your own policy documents in addition to using these tips.
Insurance: Tricare
If you have Tricare Prime you will need a referral to see a Gynecologist for pelvic pain. If you are at a base that has a Gynecologist it will be harder to get expert care.
Endometriosis affects absenteeism and presenteeism
Women who experienced 3 endometriosis symptoms concurrently lost a significantly greater number of employment hours because of absenteeism and presenteeism compared with those experiencing 1 or 2 symptoms (P < 0.001)