Hi. My name is Jill. I have been an intern for the Endometriosis Foundation of Houston (EFHou) for about a year, and I am happy to announce that I have joined the board as the
new Director of Communications and Marketing! My journey with endometriosis and adenomyosis has been a long and difficult journey, but through the years the experience has fueled a passion for advocacy and education that makes me very excited for the future.
I started experiencing symptoms of endo at age 12. It started with incredibly heavy periods that lasted around 2 weeks. Soon, 2 weeks turned into 2 months, 2 months into 6 months, and so on. At one point I counted 180 days of bleeding before I gave up on counting. Not only was the bleeding neverending and unbearable, but the pain was debilitating. In my teen years, I had to walk with a cane part-time, because I could not stand up straight from the pain. When I sought out medical help, I was met with OBGYNs telling me the pain and extensive bleeding was “part of being a woman,” that I was “too emotional,” “it’s all in your head,” “you’re seeking attention,” “just lose weight,” etc. You've heard it all, too. For years, not a single doctor validated or believed my pain. All that was done to take care of me was being put on hormonal birth control. It was not until 4 years after symptoms started that the first doctor believed my pain, Dr. Oleka at Texas Children’s. At 16 years old, one month after seeing her, I was diagnosed with stage 1 endometriosis. While receiving a diagnosis was the biggest relief I have felt in my life (I was not crazy after all!), it was not at all the end of my journey, but only the beginning.
After surgery, my pain did not go away, so I was put on more birth controls to try to manage symptoms. The hormone therapy made me nauseous, tired, depressed, and at certain points, suicidal. I did not know what was worse, the hormonal therapy side effects, or the pain and bleeding I experienced without them. A year after my diagnostic surgery, I underwent laparoscopic excision surgery with Dr. Xiaoming Guan. In this procedure he found extensive amounts of endo, which he meticulously removed. His expertise and compassion for me, and his other patients, is something that amazed (and still amazes) me.
However, 6 months after excision surgery, the bleeding came back. Soon to follow was the pain. I felt hopeless having to manage symptoms with hormonal therapies (again), and sought to get a second opinion as to what was going on. Dr. Guan’s schedule was full for months (a regular occurrence), so I sought out Dr. Garza in Austin, who performed a second excision surgery. I had stage 3 endo.
And again, 6 months after the second excision surgery, the bleeding came back with pain close behind. At this point, my mental health was at an all time low. I did not know what to do, or where to go.
I looked within the endo community, finding stories on HAEG (Houston Area Endometriosis Group) about adenomyosis, their stories and mine were similar. I consulted Dr. Garza if there was any way to determine if my recurring symptoms could be from adenomyosis, only to find out the only way to diagnose it is through a hysterectomy. At this point I was only 19, but my decision was already made. I wanted a hysterectomy if my only option of treatment was hormonal therapy. I was broken, and my mental health rapidly decreased as the dosages increased. Dr. Garza wanted me to try every option before proceeding with a hysterectomy, including Orilissa. The last thing I wanted was to be on that kind of medication, I just wanted my uterus out so I could determine my next steps, but ultimately, I proceeded with the medication.
The bleeding finally stopped and my pain was minimized, but my mental health was never lower. After less than a month, I was severely depressed and suicidal. I told Dr. Garza about the suicidal ideations, and I was promptly taken off the medication. The bleeding and pain resumed, but my mental health improved practically overnight.
This is where the “fight” truly began. I fully decided to proceed with the hysterectomy. Dr. Garza ultimately said no to the procedure, saying my ability to have children was not something he felt comfortable taking away at 19. He suggested that I ask other endometriosis specialists for a second opinion, or if they would be willing to perform the surgery themselves.
So, I went back to Dr. Guan. The appointment came, and I was prepared to have to argue my case like I was on trial (lol). We sat down and I told him that I was in pain and bleeding, and that nothing I could take safely stopped either of these, and that I wanted a hysterectomy. He looked over my past medications, surgeries, and other medical records. Right then he said that nothing I’ve tried has worked, and that I shouldn’t have to live like that. He agreed to perform the hysterectomy at that moment. One month later, the surgery was over.
I am a little over a year post op, and my life has changed for the better in so many ways. My pain has dramatically decreased, I am not bleeding, and I am not on medications that make me depressed. I have my spark back. I still am recovering mentally from the years of depression, and sometimes I do mourn the loss of the ability to someday become pregnant, but then I think back on the pain and multifaceted suffering I went through, and remember I could not live like that. It wasn't living at all, but barely surviving.
I owe so much to Dr. Oleka, Dr. Guan, and Dr. Garza. But also to my wonderfully supportive family, friends, and the community I have found in EFHou.
Comments