My Endometriosis Story
Abdominal migraines, IBS, anxiety, constipation, ovarian cysts. These are the things doctors blamed for the abdominal pain I began having at 14 years old (1999).
Every Doctor I saw had a different opinion. I honestly can’t tell you how many times I was sent to get an urgent cat scan because they were convinced I had appendicitis and was at risk of my appendix bursting.
Only for them all to come back clean. All because my pain is always in the right lower side of my abdomen. This continued until 2011 when I finally got my OBGYN to listen to me.
I started having period pain in my teens
But let’s go back a few years and talk about my cycle. My flow was heavy from the get-go.
Beyond that, I had debilitating cramps, nausea, pain when using a tampon, constipation, and later pain with intercourse. But I was told that this was all part of having a period and would eventually work itself out.
As a young girl in middle school, I was always miserable during my monthly cycle. It was embarrassing because I had to wear a high-flow tampon that I had to change every couple of hours.
Along with multiple pads that were so thick, I just knew everyone could hear it crinkle like a diaper as I walked down the hall. As embarrassing as all that was, it was better than the alternative of bleeding through my clothes, which I did on more than one occasion.
Probably the most challenging or annoying thing about my cycle is that it was never regular. When I say irregular, it was all over the place. I would have one in May, then not another until October, when I would have two. It was truly always a surprise when aunt flow would show up.
Trying everything to help my symptoms
Finally, a few years after starting my period, I asked my mom to take me to my first OBGYN. At that visit, I was again told everything I was dealing with was “normal,” and my best option was hormonal birth control.
So around the age of 15, I started birth control pills. They said the pill would help with the heavy flow and the cramps and should get me back on a regular cycle.
Over the coming years, I think I tried every available option for hormonal birth control; the pill, ring, patch, and even depo shot. They all had positives and negatives.
But none of them helped the severe cramps, pain with intercourse, and all the other symptoms I was dealing with.
Being diagnosed with endometriosis
Finally, in 2011 I was done. My symptoms came to a head; I just couldn’t handle them anymore.
With each cycle, I took much more ibuprofen than I should and lived with a heating pad attached to me all the time. I went to my OBGYN and begged her to go in and explore the area with a laparoscope to see if I had endometriosis.
In November 2011, I was finally diagnosed with Endometriosis. Twelve long years after the symptoms started.
Getting that diagnosis was honestly a relief. It validated that I wasn’t “crazy” or some kind of “med seeker.” Something was causing all my pain and other symptoms.
Since that surgery, I’ve had two more, three, to excise the endometriosis. The last of which was done in 2016.
At that time, I was just so done with all of it. When I went to that appointment, I knew what I wanted.
I was ready to have a hysterectomy. However, I was only 31, and she said she wasn’t comfortable doing a hysterectomy because I was young and might “change my mind.”
I tried explaining that because of my many other health conditions bearing children of my own just wasn’t an option. But she stood firm and said it wasn’t an option then.
I had surgery every 2-3 years from 2011 to 2016. I went back in 2018 to what I was considering my pre-op appointment for my fourth surgery. But instead, I got an IUD.
Finding something that worked
My dr explained all the pros and cons of using an IUD to treat Endometriosis. I wasn’t looking forward to surgery four, so I agreed to try the IUD.
That said, I was unprepared for the discomfort of having an IUD placed. But 3.5 years later, I can say that the few moments of being uncomfortable and the little bit of spotting and cramping I experienced were worth it.
Mostly, I don’t think about my endo all that often. There are times when the pain comes back for a few days.
When that happens, it always worries me that maybe this is when that IUD has stopped working. That this will be the year, I will be getting my hysterectomy.
But so far, all have been okay. If it does get to a point where I need another surgery to treat it, I will be getting a hysterectomy.
I’ll be 37 this year and having a baby is off the table, so there is no reason to do another excision.
This is my story, and I hope it somehow helps someone else.
Have you taken our In America Survey yet?