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

 

 

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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