My Endometriosis Story

Dear Liana,

As we were discussing the other day, by the time we’d met as college sophomores, I’d already been through a painful adolescence, although not one represented by social angst or bullying or any of the other more typical issues.  Instead, I was alone among my friends with a period that would keep me out of school or activities due to overly heavy bleeding and what was too often excruciating pain.

Your suggestion of writing down my history, now executed, has proven a powerful one. Even I, who can be my harshest critic, can only find compassion for the woman dealing with this past. So, as requested, here’s my history. Grab your coffee or tea … it’s not a brief story!

Bad From the Start

I was one of the last of my friends to get her period … I literally felt like Margaret, wondering when it was going to happen already! (Wow … if I knew then what I know now, I would have been happy to wait a whole lot longer!!!) When the event finally occurred, I was in 8th grade and sitting in Mrs. Waller’s math class (my most dreaded and miserable class, I might add.) Mrs. Waller was a formidable and seemingly unbending woman and not too empathetic towards those of us who struggled with algebraic concepts.

Are you there God? It's me, Margaret by Judy Blume That day, I remember feeling vaguely sick. Of course, I didn’t recognize the sensations. Then, I felt a gushing, and when I shifted in my seat and looked down, I saw a bloody seat. WHAT?! It was late spring and I was wearing very light-colored khaki pants. I was absolutely horrified and frozen; I couldn’t move for fear of any of my classmates seeing it and none of my close friends were in this class with me to offer support. Given my intimidation of Mrs. Waller, when the bell rang, it never occurred to me to ask her for help. I just beelined for the nurse’s office, looking straight ahead, catching no one’s eye, and fervently praying no one could see the blood on the back of my pants. I was mortified as only a 13-year-old girl can be; I was sure my world was ending.

Thankfully, the nurse was sympathetic and kind, providing me supplies, and much-needed sympathy for my plight. Mom was called and arrived with a long jacket for me to wear on my escape home.

The Virgin On Birth Control

By the time I was a sophomore in high school, I was missing at least a day of school each month because of my period. It was always heavy and the cramping was fierce. At first, my mother thought I was exaggerating (my propensity for drama biting me in the ass here) because she had never had any major issues around her cycle so she simply had no frame of reference.

After some time, Mom could see I was truly in pain, so she made an appointment with a GYN—a male—which initially made me quite uncomfortable. Fortunately, he was kind and managed to make me as comfortable as any young woman could be with her legs in stirrups for the first time. If he said the word endometriosis, it didn’t register. What I do recall is his strongly worded recommendation for birth control pills as a way of lessening my symptoms.  So, years before I had sex, I was on the Pill. On top of that, he recommended Advil (or similar) at prescription quantities (800 mg doses) as needed. In hindsight, I can see he was focused on that present moment. He didn’t discuss repercussions of long-term NSAID use and he likely never considered the fact that I’d take his words to heart and take prescription level doses of Motrin for YEARS.

The First Time I *Heard* the Word Endometriosis

I was about six months out of college, newly married to an Air Force man working for NATO, and living in Meßstetten, Germany when I first heard someone mention “endometriosis”.  A woman, late 20’s to early 30s, and mother of two, told me she had it and was anticipating surgery for it.  By that time, I’d been on birth control pills for at least 6 years with much less pain.  Although I commiserated with her a little, it seemed very disconnected to my experience.

Although my first marriage ended swiftly—I was married at 22, separated right before my 24th birthday, and officially divorced by 25—I didn’t go off the Pill until facing 30. I decided to go off it because I wasn’t clear on what long-term use did to fertility and I was positive I wanted to get pregnant at some point (I still had a “Plan B” … if I hit 35 without a partner, I’d get pregnant and do it myself.) Within 6 months, I started experiencing bad periods again.

Living With It

Once I went off the pill, I just lived with the pain. There was always cramping and varying degrees of heavy bleeding. Inevitably, it seems, I ended back in the space of missing days in which I’d have to call in to work, or leave early because I just couldn’t function. I took gross quantities of Advil (or Pamprin, a popular PMS mitigator.) I also got into the habit of self-medicating with several glasses of red wine using the logic that the uterus is a muscle and alcohol is a muscle relaxant. This went on for YEARS. I shudder to think what I was doing to my liver…

Rare clear day on Franconia Ridge, NH
Me on one of the many NH hikes I did in my 30s, enjoying a rare, clear day on Franconia Ridge in the White Mountains.

In my 30’s, I spent all my free time hiking and practicing yoga, but I simply couldn’t when I was bleeding. I couldn’t make it through a 90-minute yoga class without bleeding through a super-duper tampon.  I found that dealing with my period on the trail was just too difficult, not to mention the fatigue I felt which would make me want to just sit down wherever I was on the trail and go to sleep. On top of that, because endometriosis (which I didn’t know I had at the time) gets everywhere, including one’s bladder, colon, and connective tissues in the deep pelvic floor, my digestion would go wonky each month, too. Between the intense pain, digestive discomfort, and the heavy bleeding there were times when it truly felt as if my life energy was draining out of my body. 

“Hello. Your Pap Results Are In. They’re Abnormal.”

As you know, Liana, having gone with me to most of these doctor appointments in my mid-30s, I got the call no woman wants—my pap smear results showed abnormal cells. This is when I learned about cervical dysplasia (pre-cancerous cells). My reaction was probably like many a woman’s in that moment … ‘I have what?! HPV?! WTF is that?!’ I found out I had pre-cancerous cells growing not only on my cervix, but down along the walls of my vagina, which apparently was not common.

Friendship support and love through hard times.
This was a time in my life fear took over. This was the first moment I faced the reality that I might not have children. You were my rock, Liana, when it felt like the waves of information would knock me down and swamp me. Having you accompany me to my appointments, holding my hand in the exam room while you asked the questions I couldn’t think to formulate, and holding me after the appointment when I was overwhelmed by fear was a level of support and comfort for which I’m still so grateful … I don’t think I could have gotten through it without you.

I don’t know if you remember, but it took 3 procedures and a topical treatment (all with weeks or months in between) to get rid of the dysplasia. I endured  a “cone biopsy”, which is when a cone-shaped piece of the cervix is removed from the location of the abnormal tissue, “cryosurgery” in which they freeze the abnormal cells off, and a loop electrosurgical excision procedure (LEEP) which uses electricity to remove affected tissue. And FINALLY, a topical treatment using a skin cancer treatment cream. For 5 days, I had to first cover my vulva with Vaseline (to prevent any burning of healthy tissue), then using a douche-type applicator, apply the cream vaginally right before bed. I was told to immediately lie down so no cream would drip out and potentially “burn” other skin. Upon waking, I took a bath and washed thoroughly to remove any excess. Not a fun week, but it did the trick.

Appendicitis? NOPE! Ovarian Cysts … AND Finally, Endometriosis!

Sometime in the year I was 38, I took myself out of work one day and to the emergency room. I honestly thought I had appendicitis. I was experiencing such an intense and focused pain in just the right spot for it. However, after several hours and some tests in the ER, I was told that’s not what I had, so an ultrasound was ordered; ovarian cysts were suspected.  Sure enough, the ultrasound revealed a couple of them, one particularly large, so surgery was recommended. Once the doc went in, she was able to definitively diagnose endometriosis. Endometriosis occurs when the endometrium (lining of the uterus) grows outside of the uterus on other areas in your body such as the ovaries, fallopian tubes, outer surface of the uterus, vagina, cervix, vulva, tissue that holds the uterus in place, bowel, bladder, or rectum.

Endometriosis

Severe endometriosisThe doc discovered a LOT of endometriosis in that first surgery. She removed the cysts, cleaned up what endo she could, closed me up, and delivered that diagnosis … which oddly, seems like the first time I had the word “endometriosis” applied to me … after 25+ years of living and managing the symptoms.

Post-op, we discussed options. At that time, even though I was 38, I hadn’t given up my desire to be a mother and was still hoping I’d meet a partner who wanted to be a father. (Plan B didn’t happen. At 35 I was old enough to know how much work being a single mother would be!) Because of this, we discussed Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists drugs, common as treatment for endometriosis, which block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation, creating an artificial menopause. However, after some research, I was reluctant to take this because when researching, there were a fairly significant percentage of women who stayed in menopause and at 38, I was definitely NOT ready for that!  

Birth control pills were the next choice because they had worked before. However, this time I tried two different pills over the course of about 6-8 months—they made me absolutely insane. I didn’t recognize myself … I had crazy mood swings, I was angry and volatile, and just felt all sorts of WRONG. So I stopped them and started trying to treat myself as holistically as possible. I talked to my doc about it and we discussed non-pharmaceutical methods to lessen estrogen, such as avoiding soy-based foods and exploring herbal remedies for endometriosis.  

Fini

Although a strong, intelligent, all-grown-up woman in my 40s, there were times in the last few years that had me feeling like that lost and confused adolescent. As I write this, I’m 48 and the last couple years were, simply put, brutal.

I was feeling ovulation when it happened, which I described as someone stabbing me with a knife, fast and hot. Once I started bleeding, the fatigue was debilitating and the pain was volatile, moving from cramping to sharp, excruciating shooting bursts of pain that would leave me whimpering and breathless with my husband looking on feeling helpless.

The digestive discomfort was growing worse around my period, too. I found that if my bladder or colon were full while I had my period, it just added another layer of pain. At this point, my system wouldn’t tolerate NSAIDs any longer, they made me so sick, so other than alcohol, I had no drugs to help. I used herbal remedies, which *sometimes* could take the edge off, but at the dose I needed, I gained dizziness … I was getting desperate.

I was wrung out in all ways. At 47, the spectre of menopause didn’t seem nearly as fearful as enduring another 5-10-15 years of a painful menstrual cycle based on whenever my body decided to enter menopause. The consistent physical stress was taking its toll in myriad ways – I didn’t sleep as well, I didn’t exercise as well, and I’d isolate myself for days.

Recovering from surgery on Captiva Island
Four and a half weeks after my hysterectomy, I got to finish up my recovery on a family vacation on Captiva Island.

And the reality was that soon after meeting my current, last, and best husband at 41, I went through the emotional and mentally painful realization that having children wasn’t in the cards for me.  Accepting this helped inform my final treatment choice.

At my annual exam, I came to the decision with my doc that a hysterectomy was what I wanted and needed. My symptoms were so bad again, I was looking at another surgery anyway, so I figured why not end it once and for all?

And Now …

Liana, you know there was, and continues to be, grief around the decision because it’s truly final—I’m not giving birth.  However, I have to admit there is a weight removed. (And I truly do love being the “cool Auntie!”) Although I’m still healing from surgery (PT is helping), it’s a revelation not to be held hostage by my own body.

I’ll also admit, and I’m somewhat surprised by, how vulnerable sharing this history makes me feel. You’ve witnessed it and been there with me, but now our choice to embark on this project and start it by sharing our personal stories leaves me in a tender space.

Revisiting this past of mine brings up old emotions and new. But, as vulnerable as I feel, I’m glad to share it. I want other women to know they are NOT alone. I want women who suffer from endometriosis to find support. I want young women who may not know what’s going on that endometriosis may be the problem. I want dialogue around it because I still find it ridiculous that I didn’t have a diagnosis for years and it’s something too many people aren’t comfortable talking about.

So, thank you for suggesting I do this exercise. Telling my story, having it heard and honored, does offer me a sense of healing.

With love and gratitude,

Deb

Author: Deb Goeschel

Deb is one of the founders of Heard. Healed. Honored. https://www.heardhealedhonored.org/two-friends-heard-healed-honored/

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