I was 16 years old when the pain started taking over my life with over whelming force.
The pain in my stomach was so intense, there just aren’t any words to describe it. My menstrual cycle at the time was really irregular, so starts my first misdiagnosis of PMS and menstrual cramps. I was floored, to say the least. I knew my girlfriends that had complained monthly about their cramps, we’re not describing them like I was experiencing.
Yet at 16 I trusted my doctor and thought maybe I was just a wimp and was not able to tolerate the pain like my peers.
They put me on birth control to regulate my periods and sent me on my way. For almost a year I dealt with the pain in silence, until one day standing on risers preparing for a choir concert, the pain hit me unlike anything I had felt.
A cold sweat and shakes followed and I remember praying “Lord just give me the strength to get through this without anyone noticing.”
That is the last thing I remember before passing out.
This episode resulted in another trip to the doctor, which led to a colonoscopy, an upper GI, and another misdiagnosis of irritable bowel syndrome. I was given some medicine that was supposed to help with the cramping and sent on my way yet again!
I was feeling defeated.
The medicine was not touching the pain, the symptoms of the cold sweats and dizziness were starting to accompany the debilitating abdominal pain more and more frequently. Roughly 6 months later I ended up switching gynecologists. She listened to my symptoms and ordered an ultrasound, which led to my diagnosis of PCOS (polycystic ovarian syndrome).
I was relieved to finally have a diagnosis that made a bit more sense than the last couple. But, I was devastated with that diagnosis because with it came the news that there would be a slim to none chance of me becoming pregnant. The gyn put me on estrogen pills and gave me a chart to track my symptoms and periods. 12 weeks later I was 8 weeks pregnant.
Katy Rose was born January 2 via emergency c-section after a very complicated pregnancy and spent some time in the NICU. The pain over the next 3 years becomes a daily battle, but still with the diagnosis of PCOS. Year two after Katy was born my husband and I decide to try for another baby. After a year and half of trying to conceive, I miscarried.
However, two months later I became pregnant again and eight-and-a-half months after that, Jarron Thomas was born.
The Return of the Pain
Three months after Jarron was born I started to realize the pain I was feeling was not that of a typical c-section. I could not hold him across my stomach, my daughter could not sit on my lap, I could not lay on my stomach or even deal with the pain. Even just the pressure of cotton elastic pants touching my stomach hurt. Plus, even though three months had passed, I still looked 7 months pregnant.
I decided to visit my OBGYN, who was less than helpful. I was in pain. I was doing terribly. I wanted a second opinion.
Enter the Hero
Now if my story was a lifetime movie, this is where the bells would start ringing, angels would sing, clouds would part and Dr. Beckman would enter. He listened to my symptoms (current and past) and since my uterus was still the size of me being 6 months pregnant he decided to do a DNC and laproscopic surgery.
When I came to in recovery Dr Beckman explained to me that I had the worst case of endometriosis that he had seen in his 20+ years in practice.
My uterus and ovaries were adhered to my bladder, colon and pelvic wall. The endometriosis had also taken over my appendix and my cervix (did you know sex wasn’t supposed to always be painful? I had nooooo idea!) He tried to remove what endometriosis he could and decided to put me into chemical menopause.
I was devastated!
I know God blessed me with 2 healthy beautiful babies and I was thankful for that. Especially after Dr. Beckman said he was surprised I carried the first child and nothing short of a true miracle, that I carried my son at all. But you see I was only 23 years old. I felt like I was giving up a piece of my womanhood by having all of my female parts removed.
I struggled with it for months.
In the end at 23 years old and 6 months after my son was born, the pain of living with this horrible disease out weighed my reservations on having a hysterectomy. So, I went and got it done.
I still have scar tissue that causes me issues and pain, from them having to leave pieces behind for fear of damaging my bladder or my colon. Looking back a realize I was embarrassed every time I went to the doctor and they could not figure out what was wrong with me, so I never asked questions or spoke up.
Thank you for sharing your endometriosis battle story.
It’s nice to be able to share mine and possibly read and or hear from other when who not only live with this nasty disease but are working to conquer it! Hopefully we are able to educate others who do not believe this is a real disease.
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