RKaye09's interview
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How did all start?
Originally, my periods weren't painful. I first got my period when I was 11 and had no pain. Throughout middle school I started having more pain in which I thought it was normal and just took some NSAIDs to relieve pain during my period. I started having increased pain around my period during high school and didn't think it was a problem. During this whole time I thought having painful periods were normal. It wasn't until a family vacation in Jackson Hole in Wyoming that I realized something wasn't right. I ended up having my period at a hotel in the area and was in enough pain that I needed a heating pad to get through the day. I later discussed this with my primary care physician who recommended that it could be endometriosis.
Do you already have a diagnosis? How long did it take you to get it?
From the time I told my primary care physician to getting a diagnosis it took about half a year to eight months of going to different doctors and an excision surgery to get it. I consider myself lucky to only take about half a year to get a diagnosis. It typically can take an average of 10 years to get a diagnosis. From the time from my first period at 11 to my diagnosis it took about 10 years. Depending on the definition of the statistics showing it can take an average of 10 years, it could have taken me 10 years, but I believe it actually took less than a year for searching for answers.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I am typically only treated by OBGYNs or OBGYN surgeons, but I also work with my primary care physician and a pain specialist with other symptoms.
What has been the most useful thing for you so far?
Pain medications or medications for other symptoms have helped me. I am currently using continuous oral birth control and have an IUD, but my period has recently broken through both. I will be having another surgery to help clean out the endometriosis again. I have neuropathy referred from endo which makes gabapentin a must for me. Cannabis is also helpful. I am on my state's cannabis program and it helps a lot with reduced appetite and increased nausea.
What have been your biggest difficulties?
Pain management and keeping everything together in my life.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been supportive more recently. At one point my sister thought I was faking, but since my diagnosis it has been much better.
What things have you stopped doing?
I've stopped being as active as I used to be. Walking long distances is hard and nearly always sends me into a flare or pain later on.
What do you think about the future?
I'm not sure. I can see a lot of goals I want to get to, but I also see quite a bit of pain.
So far, which years have been the best years in your life? What have you done during them?
During my undergraduate degree was the time my endometriosis was really bad. I would say my highschool years were the best, but I also have hope for the future.
What would you like to do if you didn’t have your condition?
I would have liked to get my undergraduate degree in something other than I got it in. I had to switch mainly because of attendance issues (from pain and fatigue) and issues with being able to understand different topics fully (which is connected to attendance).
If you had to describe your life in a sentence, what would it be?
Full of pain, but also happiness and hope for the future.
Finally, what advice would you give to a person in a similar situation?
Advocate for yourself! It can be the difference between getting the treatment you want and getting a treatment that is potentially something you don't believe in. Getting an endometriosis specialist who also specializes in excision surgery is also very important. Because excision surgery is the best treatment, getting a an excision specialist is a must to proper treatment. Nancy's Nook on Facebook has a lot of information and a list of excision specialists around the world. That is also a really good resource to use as well.
