My Endometriosis Story
I had painful periods for over 20 years, starting when I was 16. I accepted this as normal and incurable all the way back then. What medicine could not fix, I was told pregnancy eventually would. I thought the pain, nausea, vomiting, etc. were just how my body worked, endometriosis was never part of the conversation.
About 15 years ago, I started developing other symptoms as well, such as GI issues, yo-yoing thyroid hormone levels, abnormal ovarian cysts, and malabsorption issues that no provider could fully diagnose. These additional symptoms were weirdly cyclical in a way I could not pinpoint at first, but after multiple tests and procedures – ultrasounds, an MRI, a colonoscopy, tests for parasites and many blood tests – found nothing really wrong with me, I started keeping a detailed diary of my symptoms.
Because I had long accepted the incurable nature of my painful periods, my diary was initially a way for me to keep track of these “other” symptoms, but over time I started to wonder if they actually could be related to my periods. My symptom diary led me to think back about when I first started to feel sick and began to try different herbs and foods as remedies. That took me back 20 years to the first time I felt sick on my period – I was so ill, vomiting so much that I couldn’t leave the bathroom, and I was in pain.
Once I noticed that connection, I began to research with the knowledge that all the symptoms I had outside of my period were way worse during my period – so maybe that was the place of origin. After watching a documentary called Endo What?, I started to suspect I had endometriosis before any provider had a chance to diagnose me.
On February 18, 2019, I had surgery to excise endometriosis. At the same time, my gallbladder was removed, as well as my appendix. My gallbladder was chronically inflamed and functioning at a level of only 3% – only the second lowest level my surgeon had ever seen, and the lowest was 0%. My appendix was scarred and wrapped around behind my colon, where it was attached. Endometriosis was found on my sigmoid colon, cul-de-sac, rectovaginal septum, left and right uterosacral ligaments, left and right pelvic sidewalls, and my right ovary was scarred down with endo and attached to my pelvic sidewall.
Almost every day, I notice myself feeling better. It’s crazy because since my symptoms were so chronic, I had learned to live with them – and with some of the symptoms the truth of their existence occurs to me when I no longer feel them. I am going to pelvic physical therapy to address the dysfunction that is happening in my muscles and nerves after years of pain and symptoms. I’m working on getting stronger through movement. Endo is a chronic, life-long condition, but I am hoping I continue feeling the benefits of excision surgery and other lifestyle modifications. It is possible I will need more treatment later, but I will cross that bridge when I come to it
In the last week, I have also been diagnosed with celiac disease, and I hope that going strictly gluten free will alleviate even more of my symptoms. This is all a process, and I hope that in 6 months, I feel better than I have in many years.
For so long, women’s health has been focused on fertility, and I think that it’s the truly upsetting thing – that we are only concerned with a woman’s health when it hinders her ability to conceive. Even the stages of endometriosis correspond mostly to fertility – the higher the stage, the more infertility is expected. But the stages do not illustrate how much pain or symptoms are present, nor do they indicate where in the body endometriosis was found.
As women our health is tied to our menstrual cycles and the hormones made by them, but fertility or lack thereof is not the only indication that a cycle has gone awry. And, we need our hormones for more than just reproduction. I read this somewhere and can’t recall where: Would a man ever be told he doesn’t need testosterone until he’s ready to be a father?
As a yoga teacher and someone steeped since childhood in the world of “unconventional” medicine, I often notice anger in those who hear my story. They are frustrated at how long it took for doctors to listen to me and for me to find skilled care. It is true that Western medicine took a long time to diagnose me, but naturopathic, functional medicine did not diagnose me, either. And highly specialized, highly experienced Western medicine has also saved me with endometriosis excision surgery and detection of celiac. There are so many providers out there on both “sides” who want to learn more and want to do good, but the true symptom profile of endometriosis is still unknown to most doctors and patients.
To many, it is still seen as simply painful cramps, and trouble with conceiving. In my body and in the bodies of so many other women, it is much, much more than that.
- EndoWhat.org – start with watching the documentary.
- Nancy’s Nook Endometriosis Education – an online patient community on Facebook. This group is more for research purposes than support, though you will find support as well through education.
- Greater Seattle Endometriosis Group – also a community on Facebook. They host meetups throughout the year, and have more localized PNW resources than Nancy’s Nook will. I found my pelvic floor physical therapist through this group.
(info from Nancy’s Nook, EndoWhat, etc.)
- Endometriosis – when tissue similar to the lining of the uterus that sheds each month during a period implants itself in places outside of the uterus. It can be found on the ovaries, uterus, uterine ligaments, appendix, bowels, fallopian tubes, lungs, liver, brain, etc. It causes inflammation and pain (though some can have it without any pain).
- Endo can be found in anyone born with a uterus, and, though rare, has also been found in cis men.
- Laparoscopic excision surgery is the gold standard of treatment today, and reoccurrence rates are much lower than for ablation
- Endometriosis is rarely seen on imaging tests, such as ultrasound, MRI, or CT scan. The only way to definitively diagnose and treat endo is with surgery.
- Excision does not equal ablation – ablation is like burning the top layer, leaving the “root” of the lesion intact. Excision is removing the lesion at the root.
- It takes an average of 10 years for a person to be diagnosed with endometriosis.
- Hormonal birth control (includes Lupron, Orlissa, and the Pill) is often prescribed for endometriosis, but its use is now understood by endo specialists to be palliative only. Hormonal birth control does not shrink lesions or make them disappear. If it helps symptoms, that is great, but beyond that it does not treat endo. Lupron and Orlissa often have terrible side effects that do not go away once the medication is stopped.
- Pregnancy is not a cure for endometriosis. While many people do have a reduction in symptoms while pregnant, that is not true for everyone. And symptoms can come back with a vengeance after pregnancy and breastfeeding are complete.
- Hysterectomy is not a cure for endometriosis. Endo is a disease that by definition occurs outside of the uterus. Removing the uterus does not remove endometriosis. Removing the ovaries (an oophorectomy) does not cause lesions to shrink either – endo lesions can make their own estrogen, so they do not need the ovaries to persist.
Going to the Doctor – When you think you have endo (but also anything else)
Some of these are my own, some I’ve heard along the way.
- Make a list of concerns you want to cover, and any questions.
- Make a separate doctor’s appointment for each concern you have (i.e. don’t tack on a question about possible endometriosis to your yearly check-up – give it its own space.)
- Be direct and as concise as can be.
- Practice describing your pain and when you have it. Is it hot? Stabbing? Does it feel like pulling? Does it happen all the time? How long have you had it? Do any movements or positions make it better, or worse?
- ALWAYS ask for records, and read them. It is much easier to do this right after the office or hospital visit rather than years later. It is in my record from an ER visit in 2011 when I had classic appendicitis symptoms “patient admits she may have overindulged at her wedding two weeks ago.”
- At the end of the visit, re-cap what was covered with your doctor, so that you both are on the same page.
- If the treatment does not work, and you still think that doctor can help you, go back and say the treatment did not work. Or if you find the answer through another provider, share that record with your previous doctor, so they get feedback.
Written by Collective member Lindsey Toledo, a local yoga teacher who lives on Vashon Island. Follow her on Instagram, or stay connected by joining her email list or sending her an email.