What I Know Now About Endometriosis

Dear Liana,

Thank you for your continued support as I tell my endometriosis story. My delayed response to your post is due to being up to our eyeballs in moving boxes and questions that always seem to start with, “Where the heck did I put …?” along with the fact I needed to process the telling of my own story and absorb your response. Your thoughtful questions required I step back and give some serious thought to what I want to express in order to help other women.

Having a Voice & Using It

Endometriosis statisticsIt’s amazing to experience how our voice, or lack thereof, can impact our health stories. As an adolescent my voice was fairly timid or nonexistent. There were certainly “taboo” topics about which I was quite uncomfortable talking, but in reality, I didn’t know what I didn’t know — our teen years occurred well before the internet was available! Looking back, I’m not sure I had enough knowledge, or even language, to ask the right questions. All I knew was my period hurt … I’d never even heard the word “endometriosis.” It occurs to me now that rather than me asking the doctors, the doctors should have been asking a lot more questions of me to get a broader and more comprehensive picture because how could I know, at the age of 16, what I don’t know?

Finding the right ob/gyn doc for me was critical — it changed my experience of my healthcare visits. I finally found the doc I stuck with somewhere in my early to mid-30s. Once I found her, I felt confident I’d be heard. In my 30s, I was much more apt to ask questions and push back, so we could actually dialogue, which wasn’t what happened when I was younger. And my doc was always running late on her appts because she did take time to talk with her patients — I never felt rushed. I do feel that my doc tried very hard to approach any of the options we discussed and attempted (including getting rid of the pre-cancerous cells) with the eye to not destroying my fertility because she knew I desired to become pregnant at some point.

As I got older, she’d always check in to see where my thoughts were on the fertility/pregnancy topic because that informed our approach. And it wasn’t until in my early 40s that the conversation changed. At that point, I made it clear that I felt that window had closed. My doc had always indicated that pregnancy wasn’t impossible, but it was highly likely it wouldn’t be easy for me, and the older I got, the more true that statement. And the fact remained, I had never been interested in a lot of the fertility options available to women today. I never wanted to spend a fortune in money and emotional/physical effort to go through fertility treatments, etc on the chance I could have a child in my mid-40s. It’s a choice many women make, and I congratulate those that do so successfully. I even have a couple dear friends who chose that route, but that path wasn’t one I wanted to take myself and my husband down.

Pre Endometriosis surgery pic
Not the most flattering of photos, but since I’m laying it all out anyway … me pre-surgery, high on something, and giggling because I looked like a purple Stay-Puft marshmallow man due to the “warming machine” blowing warmed air into my hospital johnny!

I think my experience around my hysterectomy (almost a year ago!) leads me, once again, to confirm we need advocates with us in these big moves. My husband came to several of my appointments with me, helping me ask the questions we needed answered — How was it to be done? What were the short and long-term implications? How do we handle sudden surgical menopause? What were the implications of hormone therapy? How long was a typical surgery? How long was recovery? Etc — because we were contemplating a momentous change in my body and health and life experience. But in truth, out of ignorance, there were some things neither of us thought to ask or even consider. In hindsight, my post-surgery challenges make sense, but at the time, I didn’t consider the possibility of a strained hip or adductor muscle due to the surgery itself: my five-hour surgery was longer than most hysterectomy surgeries. As my PT subsequently said, five hours in stirrups is more than my hips could manage. And I didn’t realize it’d take me so long to get an appointment with a specialist in pelvic floor rehabilitation and helping women recover from hysterectomies. It was three and a half months before my first appointment, which left me quite uncomfortable and limited in movement for several months after surgery. I’m pleased I’m making so much progress, but it’s astonishing to realize I’m 11 months past surgery and 7 months in PT and only now beginning to get things truly back on track.

At my first annual ob/gyn appointment post-surgery (about 4 months after), I found it perplexing and somewhat disheartening that when I used the words “hip injury” with my doc, she shut down. I didn’t understand what was happening in the moment, but I was confused. Later, when describing it to my husband, he stated that she probably thought I was going to sue her, which NEVER entered my mind. I simply wanted a conversation that might make it better for another woman after me. I wanted another of her patients to be told, “hey, be prepared to see a PT afterward as you might need it”. Our system makes it so difficult for doctors to be holistic with their patients!

Being Heard

Your point about the nurse helping me when I got my period is a great one. Nurses, without question, have almost always been a great resource for comfort in some uncomfortable moments. (I do remember one nurse holding my hand during one of my first pelvic exams.) But nurses are sometimes held back by their position — there’s always some information that must come only from the doctor’s mouth, and if a nurse isn’t present throughout an exam or for a discussion, she/he can’t really add more to the conversation because they don’t have all the information either. I’d like to see nurses further empowered because I think they make a phenomenal “bridge” between patient and doctor in our over-stressed healthcare system.

I read your comments about listening and being heard and I think that’s partly why I did attempt holistic and alternative care in addition to visiting with my ob/gyn to manage my endometriosis symptoms. There was a BIG difference between working with traditional western docs versus the herbalists or a naturopath. Although my ob/gyn was open to me working with other folks to find some relief — she knew her limitations — her gaze was still quite laser focused on my reproductive system. The naturopath and herbalists looked at my reproductive system and then asked me what else was going on? They wanted to know, how was my digestion, energy levels, emotional and mental well-being, etc? They worked from the premise that these other things could be both a cause and an effect of what was going on with my reproductive system.

My naturopath listened to my entire history (from childhood on) and immediately set about creating a protocol to heal a leaky gut (which caused my food intolerances), build up my immune system, calm my adrenals, and shore up my abused and exhausted liver. Treating these separate, but intertwined parts of the complex body systems DID help, in its own way, to bring some balance to my body. Somewhere in my late 30s, I had a regularly-timed period for first time ever w/o birth control pills. Pain management was a bit trickier … over the years I’ve used with varying degrees of success chiropractic, massage (although I never tried maya massage), Reiki and other energetic modalities, herbal medicines, and topical essential oil balms, all in an attempt to mitigate pain and take back some control over my life/body.

What I Want Other Women to Know

Tips for endometriosis doctor appointments.

I want any woman, especially young or adolescent women, with whom this endometriosis story resonates, to find their voice so they can ask the questions they need answered. I want to give them the opportunity to ask *me* questions so I can offer some insight and information as they navigate their own reproductive health journey. I want women to be empowered to advocate for themselves and to reach out a hand to their Liana when they need support. My entire objective of sharing this journey is so that others know they are NOT alone! So that they know what questions to ask, what expectations to temper, what challenges they may face … and to understand how many different options for treatment are available to them. And to walk away with a thorough understanding that their care and treatment choices must work for them and it very well may look different woman to woman.

I suspect young women today have more info than I did because Google exists, but it’s terribly difficult to know what sources to trust. And with definitive diagnosis so difficult to obtain, it makes it even harder for women to know what to do. And the bottom line is, every woman’s body is different and every woman’s body will respond uniquely to different modalities and treatments. We have to remember that at any given time in a health journey, sometimes it’s our bodies that need help, and sometimes our emotional or mental well being needs attention first — and women have the right to choices in the options.

Today, I’d say to any woman facing endometriosis, to write down their questions and define their places of confusion. Ask for help from a beloved friend or family member … someone who can help advocate to come up with these questions. If you’re a mother, talk to your daughters and hear what they’re saying about their particular menstruation experience so doctor appointments have more chance of being productive. Write down concerns, fears, and goals because those will help inform treatment choices. Go into every appointment with questions! And bring a trusted friend/family member/partner to write things down and help track the questions, or record the appointment so you capture everything, because it’s HARD to remember afterwards.

Cracked and Beautifully Strong … Not Broken

I LOVED that you referenced Kintsugi, that beautiful Japanese pottery tradition of mending broken pieces with gold or silver! I’ve always thought that was a beautiful practice and it’s a phenomenal metaphor for all of us women … in our lives and health journeys, we may get cracked, bruised, and sometimes broken, but we mend stronger and ultimately more beautiful for the knowledge, strength, and wisdom we gain. My current favorite image that represents that practice is a Paige Bradley sculpture called Expansion. It’s my laptop desktop wallpaper and I’ve a purchased print of it I’m eager to hang in my new house. It speaks so beautifully to the concept of Kintsugi.

Paige Bradley's Expansion Sculpture

Thank you for holding space for me in years past and again now as together we begin this health stories telling journey. I can be open and strong because I have support from you and others in my life. I’m deeply grateful for it.

Love,
Deb

 

 

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