My Life With Endometriosis: Part 2
What do you think you would do if you woke up one day and were told that you were misdiagnosed over five years ago? You would probably roll your eyes and laugh thinking that your anesthesia was making you dream some pretty weird stuff. Atleast, that's what happened to me.
All was going according to plan the morning of my Endometriosis surgery. I got to the hospital, filled out the paperwork, they started my IV, and into the operating room I went. I woke up only 45 minutes later to, "good news, Madeline, you don't have Endometriosis!"
My first thought was, wow, this nurse has no idea what she's talking about. So, when my boyfriend, Casey, walked into my recovery room I said "they told me I don't have Endometriosis," and I laughed. He looked at me and said, "yeah, because you don't. You have Adenomyosis."
I was so angry. How did this happen? They surgically diagnosed me with Endometriosis five years ago— at the same hospital— and have been trying to treat it ever since. I just started to feel comfortable in my knowledge of Endometriosis and now I have to learn something new that I should have known five years ago anyway?!
It has been three weeks since I got the news of misdiagnosis and I am still trying to take it in. Since seeing my doctor last week, I have gained very little knowledge about Adenomyosis— I am not sure I'm ready to research the way I did for Endo. But, my surgeon (who is awesome, by the way) told me that this is a very common misdiagnosis. She was able to go in and see the Adenomyosis within minutes and said that it appears very similarly to Endo; so, if someone other than an Endometriosis specialist is looking at me, even the Gynecologist who preformed my first surgery, it is typically missed.
Okay, so I don't have Endo; now what? Well, she is putting me on a new birth control. For those of you who may be unaware, birth control is used for a lot more than preventing pregnancy. In my case, I will be taking three months straight of pills and then I will have one period in the fourth month. Essentially, I will now only get my period four times a year. This will allow my body time to try and heal itself and hopefully, with the right combination of hormones, reduce the pain and extreme symptoms I feel during my cycle.
While this is a frustrating situation, I keep reminding myself that this is a positive; I have a great doctor and a great support system who have helped me take this news and view it in a positive light. I am excited to see how the new pill will work for me and my symptoms as well as finally having an answer to why I was in so much pain all these years.
As I said in my last post, I am not telling you this to get pitty. I am sharing my experiences so that it may help others. If you are feeling any of the following symptoms* during PMS or while you are on your period, I highly encourage you to see a specialist— it could change your life.
Heavy or prolonged menstrual bleeding
Severe cramping or sharp, knifelike pelvic pain during menstruation (Dysmenorrhea)
Menstrual cramps that last throughout your period and worsen as you get older
Pain during intercourse
Blood clots that pass during your period
If you are in the Chicagoland area and would like to see my specialist (seriously, she's the best) just let me know and I will get you her information.
Please let me know if you would like to read more about my journey with Adenomyosis— I am an open book with this topic and encourage you to ask me, others like me and (obviously) medical professionals about experiences with Endo or Adeno.
*You do not need all of these symptoms to meet with a doctor. Even one symptom could mean something is off. Personally, I do not have all of the symptoms listed above and have several symptoms that are not on this list.