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What I Wish I Knew When I Was First Diagnosed

For many women, the journey to an endometriosis diagnosis can take years. In fact, most women have to wait an average of 7-8 years before receiving a diagnosis. After a diagnosis of endo, you may have questions, or wonder what to do next.

To better meet the needs of newly diagnosed Endo Sisters, we asked our advocates, “Thinking back to when you were first diagnosed with endometriosis, what do you know now that you wish you knew then?“. Check-out their responses below.

From Alene

“I wish someone told me that endometriosis was suspected to be an autoimmune disease. I would have begun exploring the healing process of autoimmune disease. I understand that physicians go by what is confirmed with hard, long established studies, but I think there’s also a way to share information with patients that let’s them know, “We don’t have a tremendous amount of research on this yet; However, we’re starting to explore if endometriosis is an autoimmune disease.”” Read more about Alene here.

From Amanda

“Nobody ever explained how quickly it can grow and take over when left untreated. Unfortunately, mine was left untreated for two years because no doctor would believe that a teen could have endometriosis. They insisted nothing was wrong with me until I saw about 15 doctors. I may not have begun with stage 4 if somebody would have bothered to do something in the first two years instead of saying that I was just depressed or “being a baby”. I wish my specialist would have told me once I was married that we should have done my hysterectomy immediately instead of waiting…” Read more about Amanda here.

From Fela

“I wish I understood how much my life was going to change and that there isn’t just a simple fix. It’s a long road filled with ups and downs and trial and error. It becomes such a big part of your life and I didn’t even really understand the concept of an illness having such control. Most of all, I wish I had known about excision surgery when I first got diagnosed. Instead, my disease progressed and spread, and by the time I was able to have a proper removal of the disease, it had caused immense damage.” Read more about Fela here.

From Jess

“I wish I had known more people who had endometriosis, especially when I was an adolescent. I think I would have had an easier time coping with it if I knew people who I felt could really understand. I also wish I had known (or that I was old enough to understand) that the surgeries I had likely contributed to some of the scar tissue that affected my fertility. When I was younger, I just desperately wanted the pain and excessive bleeding to stop and didn’t have the capacity to consider the future implications of having 3 surgeries in 10 years. I ended up needing a fourth before I could begin fertility treatments.” Read more about Jess here.

From Jessica

“Everything! When I was first diagnosed, the endometriosis was lasered off, and I was told that it hopefully won’t come back, and was sent on my merry way. No one told me that fatigue, brain fog, IBS problems, estrogen dominance, depression, and anxiety were all connected to endometriosis, and yet I was facing these issues daily. It took me several years to discover the connection. I was so relieved to know that they were all related to the same problem, rather than it just being my body and mind totally falling apart! Now I know all this, I’ve been able to address not just the symptoms, but the root cause – I’ve found working with my hormones one of the biggest factors in reducing these issues and managing them, but I suffered for years with them alone.” Read more about Jessica here.

From Jessie

“I wish I knew that I would manage this illness better than I thought. I worried endometriosis would beat me, and take away so much more than it had already taken. I didn’t know I had the strength in me to live with an illness like endometriosis. I also wished somebody had warned me about the invasive questions I would be getting from friends, relatives, and even strangers. I get asked so many times about my ability/desire/willingness to have children, and it’s very unsettling every time.” Read more about Jessie here.

From Keri

“It would have been life changing if I knew that hormonal birth control wasn’t a magic bullet. I tried somewhere around 7 or 8 different kinds. Not one of them prevented the recurrence of my endo, but they all made me feel terrible, emotionally and physically. My specialists at the time made it seem like my endo would spread like a wildfire if I stopped taking it. But my mood and body felt better when I quit hormones. Adjusting my diet has helped wth the pain. With that said, no one ever told me at the beginning how much changing my diet would help. In their defense, to this day, there haven’t been extensive studies about diet and endo. It took 20 years to find a doctor — and a gastroenterologist at that — to finally make the link between my digestive problems and endo.” Read more about Keri here.

From Kimberli

“I wish I knew it was going to come back so quickly. My surgery was a year ago and I only found a few short months of relief. Now, I feel it is back and back 20 times worse. I wish I knew of support groups before my surgery to get opinions about my doctor and opinions on other doctors.” Read more about Kimberli here.

From Laura

“I just wish I had more support and understanding the disparities in treatment that women in pain often go through. Also, I wish I knew more about the potential connection between chemicals found in our food, clothes and personal care products on the endocrine system and how that can exacerbate endo. I would have made dietary and lifestyle changes at an earlier age and may have preempted the of the more egregious side effects and impacts of the disease.” Read more about Laura here.

From Meredith

“That pain, bloating, and the other symptoms that go along with endo are not normal. Do not accept it when a doctor is telling you there’s nothing wrong; Trust your gut and keep searching until you find answers. Also, finding a team of health professionals who specialize and are up to date with the latest research on endometriosis is important.” Read more about Meredith here.

Can you relate? If you’ve been diagnosed, What do you wish you knew