Hysterectomy at 25: My Endometriosis Story

An article from The Cut graced my Google news feed a couple of days ago, and I thought I was going to puke.

The article is titled, “An Actual Study Asked: Are Women with Endometriosis Hotter?”

Yes, it’s as awful as it sounds.

There was in fact a study conducted in 2013 that aimed to prove that having rectovaginal endometriosis made a women more “attractive.”

I was aware of this bullshit study years ago, and when I read the headline of this article, I feared that the study somehow had a resurgence in popularity, but, instead, the article discussed that “after years of criticism from the medical community, the authors of a scientific study that aimed to measure the “attractiveness” of women with endometriosis have requested that the study’s findings be retracted from the medical journal that first published them in 2013.”

So, that’s a small win.

As I began to calm knowing that the authors of that abhorrent study were actually, finally, trying to retract the trash they had perpetuated, a wave of new anger boiled inside of me, and I felt the need to write it out.

I Have Endometriosis

I have endometriosis. (Technically, I’m in remission.)

I began having problems the second I started having periods.

When my mom told me that her periods were only three days long and that she barely noticed, I thought I must just be sensitive, but as the pain and bleeding increased in intensity and affected my day to day life, I knew something had to be wrong.

Suffering in Silence

Before I felt comfortable enough to talk about it with my doctor, I had to quit playing sports because the cramps would be so intense that I could barely stand and the bleeding would be so intense that I was bleeding onto my sports uniforms during games. I repeatedly bled through my regular clothes, and I finally started carrying around an extra pair of pants and underwear with me from the age of 12 until I was 25. My friends would call me dramatic as we would talk about our periods and I would say how bad mine were and how nauseous I was. My periods would last 14-20 days, but the nausea was fairly constant. Sex was painful, but I just figured everyone felt that way. I had days when I couldn’t sit or stand, and it hurt anytime I had a bowel movement, even when I wasn’t on my period. When I moved in with my then fíance, now husband, he came back home unexpectedly one morning to find our bed full of blood and blood running down my legs as I could barely walk to the bathroom crying and in pain. I missed countless days of work and school, days of my life, and I felt completely alone and crazy.

I suffered in silence for years.

I brought it up once to a male gynecologist and he referred me to a psychologist for an evaluation for “anxiety.”

I saw a male gynecology specialist and I was told that I had fibromyalgia.

No one was listening, and I continued to tell myself that I needed to just “suck it up.”

Finally, the first year my husband and I were married, I had an ovarian cyst that caused me to have to go to our local emergency room. The gynecologist that I was referred to go see days after I was discharged was horrible. He told me that I just needed to exercise to not be in as much pain and that I needed to “toughen up.” After the appointment, before I went to sit in my car in the parking lot and cry, I asked the woman at the front desk to be referred to the female gynecologist I saw on the list for their practice that was closer to where I lived. I figured if I was going to have to deal with terrible healthcare, it might as well be a shorter drive.

New Gynecologist and New Hope

Switching to the new gynecologist ended up being the best decision I ever made.

When I met with the new GYN a month later, she was horrified to know that I was 21 years old and that no one had ever talked to me about endometriosis.

I got my period when I was 12, so for 9 years, I suffered from intense bleeding and pain, but probably worst of all, I suffered from not being listened to by the medical community.

She immediately started me on a host of meds and holistic remedies, and unfortunately, nothing was working as hoped. At this point, my husband and I had been married for a year, and she asked if I had planned on having kids. I said that it was the plan, but not until I was in my mid 30s. She indicated that, unfortunately, with endometriosis, the older you get, the harder it is to conceive and carry.

So, her prescription for me was to think about trying to get pregnant.

It was a difficult choice to try to have a baby at that time, especially being so new in our marriage and not really planning on having children until I was a bit older, but my husband and I knew that we wanted to try to have kids on our own, so we went ahead and started trying.

Pregnancy and Labor

It was a lot more difficult to conceive than I thought it was going to be. (I was brought up Catholic and was taught that you get pregnant after you have sex once and then you go to hell, so I feel really let down that neither of those things happened.)

It took months before I actually got pregnant, and then I lost it.

I was told it wasn’t unusual and that I probably wouldn’t have even noticed had I not been actively trying.

So, I was very surprised when a few months after that I became pregnant. My husband refused to believe it until I went to the doctor and had a blood test.

The doc confirmed, and I was officially pregnant! There was an immense sigh of relief. I knew how hard it was to conceive with endo, so I felt incredibly lucky.

However, pregnancy was an entirely different nightmare. I was sick throughout my entire pregnancy. I was constantly in pain and forever nauseous. The GYN who I saw when I was first pregnant told me that I had a retroflexed uterus, most likely from the endometriosis, so I was going to be more susceptible to urinary incontinence or difficulty urinating, and back pain. I never had those “good” months of being a glowing, majestic being. No, I was pissing myself, had diarrhea, and was vomiting for nine months straight. The pain in my pelvis, tailbone, and lower back was excruciating. Thankfully, I had a very mindful OB/GYN who helped me every step of the way. I finally made it to my labor day, and it was the worst pain of my entire life.

I was scheduled to be induced on a Wednesday and, instead, I went into labor on my own on Sunday.

I had back labor, which is basically unrelenting, intense pain in the lower back during labor that doesn’t let up as labor progresses.

So, it was pretty much the worst.

I puked through the whole thing and ended up with a ridiculous tear, but I had a wonderful baby to show for it.

He was healthy, and that’s really all that mattered to me.

Taking a Turn for The Worse

I was told that sometimes pregnancy can cause endometriosis to go into remission, so I was looking forward to being problem free after the birth of my son.

Unfortunately, that’s not what happened.

About six months after my son was born, the pain was back, and it was worse.

My OB/GYN that I had through the majority of my pregnancy had me try some newer meds for endometriosis, but nothing helped, so we agreed to do an exploratory, abdominal laparoscopy.

During the laparoscopy, my endometriosis was confirmed, and they even found multiple holes in my uterus. My doctor was able to do what he could with the endometriosis lesions and cauterize the holes in my uterus.

We discussed that, for some women, doing a laparoscopy and excising some of the adhesions can help symptoms, and it worked that way for me too, for about six months.

Then I was back in my gyn’s office. I tried a few more drugs, including one that put me into a pseudo-menopause, but either my symptoms kept returning or I couldn’t tolerate the side effects of the meds.

So, when my son was two years old, after a horrific period that resulted in me being in so much pain I could barely take care of my son, I went for an appointment with my gyn.

Hysterectomy

I burst into tears and told him that I couldn’t do it anymore, and he said, “If you’re done, we can be done.” We then discussed a complete hysterectomy. (A complete hysterectomy includes the uterus, and both ovaries.) My symptoms were so severe, and I had tried ever other therapeutic drug possible, so a hysterectomy was the next course of action. He told me that I could have time to prep eggs to freeze, but that the process may be painful and uncomfortable because they have to boost your estrogen, which fuels the endometriosis.

I went home to talk my options out with my husband, and I even had one of my cousins offer to be a surrogate for us, but, ultimately, we decided that if another kid was in our future, adoption was the way we were going to go.

On June 12, 2012, at the age of 25, I had a complete hysterectomy.

I had to have a vaginal hysterectomy because my uterus was enlarged, so it was a tougher healing process than it would have been if I was able to have it laparoscopically.

I woke up in my hospital bed hours after my surgery on the same floor as moms who were recovering from giving birth. It was an odd place to be to wake up without being able to carry a baby ever again and listening to the sounds of newborns. In a way, it wasn’t odd at all, because I guess, I was nursing a new life for myself, too.

I immediately went into menopause.

Yup, at 25, I was menopausal. Which proved to be considerably tricky while chasing after a toddler, but we survived. I will take hot flashes over debilitating pain any day.

I do not regret my hysterectomy for one second. I can’t even begin to count how many days I missed for periods that I gained back post-surgery. I was present for every moment of my son’s toddlerhood, super sweaty, but present.

Now

Eight years later, and it’s not all roses and sunshine. In addition to hot flashes and other post-menopausal issues, I still have serious pelvic floor and bowel issues from years of endometriosis wreaking havoc in my pelvis and abdomen, but I keep working with some wonderful doctors to get things under control.

Now, what enraged me after reading that article about that bullshit study, was that endometriosis still needs some serious research.

There is a considerable lack of funding for research for a disease that affects 1 in every 10 women. Why?

Why does endometriosis get completely ridiculous studies about the effect of this debilitating and life-changing disease on a woman’s physical appearance, but serious research goes into male health issues like ED? Men would be horrified if a study ever came out that said that erectile dysfunction made men less attractive.

Diseases that affect women deserve real research!

You’re Your Own Best Advocate

It took me years to finally be believed, and even after everything that I’ve been through and the hysterectomy, I still am looked at like I’m “hysterical” by some doctors and specialists. This needs to change.

The gender gap in healthcare is literally killing women and forcing too many to suffer in silence, especially women of color.

So, I’m asking for everyone to be an advocate for women’s healthcare and research.

If you are suffering from endometriosis symptoms, please reach out to your doctor for help, and if they don’t listen, immediately find someone else. Don’t let someone tell you that you don’t know your own body. You live in it every day and you know it better than anyone.

You are your own best advocate, and you deserve to feel your best.

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