Diagnosis of Endometriosis
Hi all,
I'm new to the community here and wanted your perspective + advice. To start, I have not been medically diagnosed with endometriosis but I'm certain that I have it - it also runs in my family.
I used to have extended periods (typically, twice a month) and heavy bleeding (menorrhagia). There would be days where I was in extreme pain and could not move out of bed. Soon after, my physician prescribed hormonal birth control and called it good for the next ten years. Years later, I experienced a ruptured ovarian cyst and discovered that sexual intercourse is unbearable. Additionally, I have also recently been diagnosed with SIBO with a functional health medicine physician (constant bloating that is uncomfortable).
I guess, my question is it worth getting diagnosed for endometriosis if I'm not in constant pain? What are the benefits of knowing your diagnosis of endometriosis? And how can that shape your future?
Hi
, I'm so glad you've joined us here! And I'm sorry to hear that you are dealing with all of this. Endometriosis can show up in different ways for different people--some have terrible pain all the time, some have heavy or irregular bleeding, some have painful intercourse and some don't. Even though you are not in constant pain, it sounds like your symptoms are impacting your life. Knowing--or at least being fairly sure--that your problems are caused by endometriosis can help you and your doctor make better decisions about what type of treatment to try.
Laparoscopy is typically thought to be the "gold standard" to make a diagnosis. There are, of course, pros and cons to having surgery. If you haven't already, you could have a clear conversation with your doctor about testing and treatment options. Discuss the possible risks and benefits, and then together you can decide on the plan that is best for YOU.
Here's one community member's story about her diagnosis: https://endometriosis.net/living/diagnosis-journey-part-1.
Please let us know how things go for you. Wishing you all the best! -Audrey (endometriosis.net team)Thank you!
Hi Bailey. Welcome! Surgery is definitely a decision to make with your doctor, preferably someone who treats people with endometriosis a lot. But I'll speak from my experience. My diagnosis changed many aspects of my medical care down the line. It didn't fix my period pain. But my surgeries (followed by pelvic floor therapy) were very helpful for easing pain with sex — I've had lots of scar tissue removed over the years, along with endometriosis. Knowing I have endo has also been a clue for my gastroenterologists and physical therapists. My mother, who didn't have pain, also struggled with infertility. Surgery seems to have helped her conceive. (Though, it's possible she would've gotten pregnant anyway.) I'd suggest going over your goals with your OB/GYN (again, preferably someone very experienced with endo) to see what the pros and cons of a diagnostic surgery might be. Wishing you well! - Keri (endometriosis.net team member)
