As Jacquelyne Froeber tells
March is an endometriosis consciousness month.
I remember that I had problems with my period as a teenager, but it was early 30 when I started to have pelvic pain and cramps that would not disappear.
I made an appointment with my gynecologist and she said I had some little cysts, but she – and whatever I had, don’t be worried.
But in the next few years my symptoms got worse and it became a big deal. In addition to the pelvic pain, I had back pain, constipation, flatulence, severe bleeding, pain in sex and dazzling headache attacks. A few days were so bad that I couldn’t get out of bed.
I knew that some people thought I was dramatic, but nobody could see the clamp of lesions and abnormal tissues that grow on and around my reproductive organs, cause inflammation and pain and cause my inside chaos.
When I was 36 years old, I decided to go to another gynecologist and thought she could understand my pain. Unfortunately she didn’t. “This is how periods are,” she said. But finally she referred me to a health service provider (HCP) who treated endometriosis.
I had never heard of endometriosis. Although I was angry that she had released my symptoms, I was thrilled to have a episode with someone that could actually help me.
After the new HCP had ordered a number of tests, we decided together to carry out a laparoscopic procedure in which a thin, illuminated tube (laparoscope) is introduced by a small cut to view the pelvic cavity and identify endometrium tissue.
When the results came back, he said I had endometriosis. I felt a flood of relief and an increase in adrenaline. I was finally able to start with my life. We then decided to advance with endometrium ablation. After the procedure I felt better for a few weeks, but then all symptoms came back.
“What is our next step?” I asked my provider.
“Go out and get pregnant,” he said.
He didn’t joke.
He continued that most women have fewer symptoms of endometriosis during pregnancy.
I immediately felt how I pulled myself back into my shell. My mind whirled. What he said was completely inappropriate. Unfortunately, the fact that I was single and that nobody can stay pregnant forever – what then? – Pregnancy is not a treatment. My stomach screamed with anger and agony. But my brain started to be deaf.
After I had clarified that if I wanted to get pregnant, I didn’t want to treat my illness, hoping that it would shrink endometriosis.
Ironically, the medication brought me into a state of menopause, and I quickly added hot flashes, vaginal dryness and dramatic mood swings to my growing list of health problems.
In a minute I was completely fine and in the next minute I sobbed and hid out of the world. The side effects were so extreme that I didn’t start long after I started it. There had to be another way.
After a few visits to various providers, a surgeon in Baltimore took my endometriosis symptoms seriously, and we decided on excision surgery to cut out the affected areas.
I was carefully optimistic about the procedure that had gone through everything – but when I woke up from the operation, I knew that something was different. The operation had worked! For the first time in years I had a significant decline in pain. I felt like my old me.
Lindsey about Capitol Hill was committed to financing and researching endometriosis.
But the excitement was short -lived. A few months after the operation, the pain and severe bleeding came back.
My HCP recommended another injectable drug (which I later learned that men with prostate cancer were normally prescribed), but the side effects were even worse than the medication I was previously. I stopped taking.
All medications, operations, hormones and pain put a significant impact on my mental and physical health. After turning 40, I quit my prestigious job in Washington, DC, and moved home with my mother and stepfather. I felt broken. I spent my days in a fog with sunglasses in her house.
My mother and stepfather supported me and took care of me for the next six months until I felt strong enough to take off and live alone.
Nevertheless, every day was affected by the symptoms of endometriosis. I returned to the HCP, which carried out the operation to see if I could still try to treat the disease. It turned out that there was an option – a hysterectomy.
I knew that a hysterectomy was a possibility, but it seemed so extreme. A hysterectomy meant no chance of giving birth. I didn’t know if I could make this decision. I left the appointment alone and confused and angry that it was an option to remove my organs at all.
I didn’t take the decision easily. Six months later, I decided to have the hysterectomy and also remove my left ovarian – the one who hurt the most.
After the hysterectomy, the surgeon told me that everything was fine, but they removed the right ovary – not the left. Why? He said the right one looked “worse”.
“But we didn’t decide that before the operation,” I protested. “My left ovaries is the one who hurts.”
And it still does today.
In order to make things worse, the hospital wanted to release me on the day of the operation. I declined. I couldn’t believe that they wanted to send me home after removing all my reproductive organs. This was a greater operation, but they treated me like me for a routine examination.
This day was the turning point for me. I shouldn’t have asked and ask to stay in the hospital that night (they finally released me). Without my consent, I shouldn’t have taken out the wrong ovary. I should have more treatment options that are not about taking body parts primarily.
I was ready to feel dismissed and how my feelings didn’t matter. You did it – you do it.
During my endometriosis trip, I found it very important for myself to take part in an endometriosis community. I connected to the CEO of the Endometriosis Association, which greeted me with open weapons to share my story to educate others and increase more funds for endometriosis. This was also my way to speak against everyone who did not seriously take me – or the illness.
The awareness of endometriosis has become my full -time job. Over the years I have managed many interviews and spoke engagements. It was an honor for me to be the first brand ambassador to the Endometriosis Association, and I continue to support research on Capitol Hill and on my own website.
I still tell my story because there is still no healing for the disease. I want more awareness. I want more financing. I want more research.
We cannot accept that our options are either pregnancy or hysterectomy. We deserve to be heard and we want to act. We just don’t want the plot to remove our parts of the body.
Do you have your own real women, real stories you want to share? Let us know.
Our real women, real stories are the authentic experiences of women in real life. The views, opinions and experiences that are shared in these stories are not supported by healthwomen and do not necessarily reflect the official politics or position of healthwomen.
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