These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
My Journey with Suspected Endometriosis
by Heather Marie McAleese
(Gainesville,Fl, United States)
Hi, My name is Heather.I started to have the classic symptoms of endometriosis at 11 years old. I had heavy prolonged bleeding and painful periods to where I couldn't go to school every month.
As I got older the pain got worse over time. When I was 17 years old in high school, my pain during my period got so unbearable I was rushed to the ER. There the doctor did some blood work and did a CT scan. The blood work came back normal but the scan showed that I had a bunch of cysts on both of my ovaries.
The PA said they looked Poly-cystic and suggested that I see an obgyn to be put on birth control. I saw the doctor and she put me on several different types of birth control because I was still having painful periods and heavy bleeding.
So she referred me to a different obgyn for a second opinion. I met the new doctor. At that time, I was in a relationship and sexually active. I told her how my cycles were and how heavy and painful they were and how having sex hurts a lot.
She did some blood work to check for hpv and that came back negative. She did an ultrasound and saw only one tiny cyst on my left ovary. She told me the hormones are helping the cysts but that cysts shouldn't be causing you that much pain all the time. So she told me she suspects that I have endometriosis.
She wanted me to try a different bcp called seasonique. She told me if this does not help she was going to refer me to the hospital to get the laparoscopy surgery done for me. I tried the pills for a couple of months and it did not help. My health insurance expired so i couldn't take the pills or see my doctor.
I kept pushing through the pain and I graduated high school with honors. A couple years later I moved out of my dad's house to live with my current boyfriend to go to college and try to work part-time. The pain just kept getting worse to where I had to stop going to school and I was missing too many work days. A co-worker of mine mentioned a voluntary health program for uninsured and low-income patients.
I immediately applied and started making doctor appointment's again. I met with my GP. I told him my medical history and he ordered some blood work to check my hormones and did another ultrasound. The blood work came back normal but the ultrasound found one tiny 8 mm cyst on my left ovary and said that it could be endometriosis as well.
So he referred me to an obgyn through Shands. I met up with her and told her my medical history and what tests I've had done and birth control I already tried. She told me to try a continuous bcp that is to treat for mild endometriosis for six months and try pelvic floor physical therapy for a couple of months.
She said if that doesn't help surgery was the next step. I went ahead and did what she told me to do. The pills were actually helping but therapy didn't. I kept taking the pills until I noticed a rash was forming on my face. It didn't itch it was just red and inflamed. I made an appointment with a different lady doctor because the one at Shands went somewhere else.
I explained what was happening at the office where she could physically see the rash on my face. I asked her if it was the hormones. She said that couldn't be because it was helping me. She referred me to a dermatologist to see if it was eczema. I saw the doctor and she prescribed me a steroidal cream.
I tried as directed and the rash was still there. I asked my obgyn if i can stop taking the pills. She agreed and wanted me to schedule another appointment with her. A week later, the rash cleared up and didn't return. I saw my doctor and she was surprised that my face was cleared up.
She was hesitant about me getting surgery still and have me try provera tablets and that did not help either. Then my insurance expired and I couldn't once a again see my doctor and get a diagnosis. A year later, my periods were still super painful and heavy. Then I was not having a period.
I sometimes skip a month and start the next. This time that wasn't happening. So I just waited it out. Still didn't come. I took four at home pregnancy tests. All were negative. So I made an appointment with my doctor. When I saw her we did a pregnancy test there and that was negative. She then said she is willing to do the surgery for me.
We scheduled the surgery for March 20th. In the meantime, she wanted me to take provera pills for 10 days and wanted me to get blood work done to check my hormones again. After taking provera, I still didn't start my period. The blood work came back normal except, I had high levels of testosterone. I went back to my doctor about my results and she told me the high levels of testosterone is from PCOS and that can explain why I wasn't having a period for four months, and acne, and really bad mood swings.
She said I can still have endometriosis because of the constant pain. I went in for pre-op to only cancel the surgery because my insurance does not cover the price up front. I am 25 years old and once again another delay in getting a diagnosis. So for now I am taking a generic brand of seasonique until I have enough money saved to get the surgery to be pain-free for a while for once!
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