My Treatment Options for Endometriosis Were Unacceptable

As told Jacquelyne Froeber

March is Endometriosis awareness month.

I remember having problems with my period when I was a teenager, but it went to my 30 years when I began to have pelvic pain and cramps that did not disappear.

I made an appointment with my gynecologist and she said she had some small cysts, but they, and any pain she had, were nothing to worry about.

But in the coming years, my symptoms worsened, and became a big problem. In addition to pelvic pain, it had back pain, constipation, swelling, heavy period bleeding, pain during sex and attacks with blinding headache. Some days were so bad that I couldn’t get out of bed.

I knew that some people thought it was being dramatic, but no one could see the bridge of injuries and the abnormal tissue that grew in my reproductive organs, causing inflammation and pain, and wreaked havoc inside me.

When I was 36 years old, I decided to go to another gynecologist thinking that I can understand my pain. Unfortunately, she doesn’t. «This is the periods,» he said. But finally, she referred me to a medical care provider (PSH) that treated endometriosis.

I had never heard of endometriosis before. So, although I was enraged that she discarded my symptoms, I was delighted to track someone who can really help me.

After the new HCP ordered a series of tests, we collectively decided to do a laparoscopic procedure where a thin and illuminated (laparoscope) tube is inserted through a small incision to look at the pelvic cavity and identify the endometrial tissue.

When the results returned, he said he had endometriosis. I felt an avalanche of relief and a wave of adrenaline. I could finally start moving forward with my life. Then we decided to move forward with endometrial ablation. After the procedure, I felt better for a few weeks, but then all the symptoms returned.

«What is our next step?» I asked my supplier.

«Salt and get pregnant,» he said.

I wasn’t joking.

He continued saying that most women have less endometriosis symptoms during pregnancy.

I immediately felt retired in my shell. My mind turned. What he said was completely inappropriate. No matter that I was single and that no one can get pregnant forever, then what? – Pregnancy is not a treatment. My abdomen shouted with anger and agony. But my brain began to numb.

After making it clear that if I wanted to get pregnant, it would not be my illness, they prescribed an injectable medication with the hope that I would shrink endometriosis.

Ironically, the medicine put me in a menopausal state, and I quickly added stifling, vaginal dryness and dramatic humor changes to my growing list of health problems.

A minute was perfectly well, and the next minute I was sobbing and hiding from the world. The side effects were so extreme that I stopped taking the medication not long after starting. There had to be another way.

After some visits to different suppliers, a surgeon in Baltimore took my symptoms of endometriosis seriously, and we decided a split surgery to cut the affected areas.

I was cautiously optimistic about the procedure given everything that had happened, but when I woke up from surgery, I knew something was different. The surgery had worked! For the first time in years, I had a significant decrease in pain. I started feeling like my old self.

Lindsey in Capitol Hill advocates the financing and investigation of endometriosis.

But the emotion was short duration. A few months after surgery, pain and strong hemorrhage returned.

My HCP recommended a different injectable medication (which I later learned that it was generally prescribed for men with prostate cancer), but the side effects were even worse than the medication in which it was before. I stopped taking it.

All medications, surgeries, hormones and pain significantly affected my mental and physical health. After doing 40 years, I left my prestigious work in Washington, DC, and I moved home with my mother and stepfather. I felt broken. I spent my days in a fog with sunglasses inside his house.

My mother and stepfather supported me and took care of me for the next six months until I felt strong enough to move and live alone.

Even so, every day was affected by the symptoms of endometriosis. I returned to the HCP that did the surgery to see if there was anything else that could try to control the disease. It turns out that there was an option: a hysterectomy.

I knew that a hysterectomy was a possibility, but it seemed so extreme. A hysterectomy meant zero possibilities of supporting children. I didn’t know if I could make that decision. I left the appointment feeling alone, confused and furious that eliminating my organs was an option.

I did not make the decision lightly. Six months later, I decided to have the hysterectomy and also take off the left ovary, the one that hurts the most.

After the hysterectomy, the surgeon told me that everything went well but that they removed the right ovary, not the left. Because? He said the correct seemed «worse.»

«But that’s not what we decided before surgery,» I protested. «My left ovary is the one that hurts.»

And he still does today.

To make things worse, the hospital wanted to pay me on the day of surgery. I refused. I couldn’t believe they wanted to send me home after eliminating all my reproductive organs. This was greater surgery, but they treated me as if I came to a routine check.

That day was the turning point for me. I shouldn’t have had to beg and beg that I stay in the hospital that night (they finally clarified to stay). I should not have had the incorrect ovary without my consent. Yo ought Have more treatment options that did not involve taking body parts first.

I had finished feeling fired and, as if my feelings did not matter. They did, they do.

During my endometriosis trip, it seemed very important to get involved in a community of endometriosis. I connected with the CEO of the Endometriosis Association that welcomed me with open arms to share my history to educate others and raise more funds for endometriosis. This was also my way of speaking against all those who did not take me, or the disease, seriously.

The growing awareness about endometriosis has become my full -time work. Over the years, I have done many interviews and commitments. I had the honor of being the first ambassador of the brand of the Endometriosis Association, and I still advocate for the research on Capitol Hill and through mine website.

I keep telling my story because there is still no cure for the disease. I want more awareness. I want more funds. I want more research.

We cannot accept that our options are pregnancy or hysterectomy. We deserve to be heard and want action. We simply do not want the action to eliminate the parts of our body.

Do you have your own real women, real stories that you want to share? Let us know.

Our real women, real stories are the authentic experiences of real life women. The opinions, opinions and experiences shared in these stories are not backed by healthy women and do not necessarily reflect the official policy or the position of healthy women.