Endometriosis: My Story

March is Endometriosis Awareness Month

Women live in pain, and it affects not just our physical well-being, but our quality of life, and eventually how we age. I have wanted to share this for other sufferers for many years, it is very personal, but spreading awareness is key, so I am sharing this condensed version of my story even if it only helps one other woman — it is worth it.

Symptoms of Endometriosis:

A primary symptom is pain. Other common symptoms include:

• Abnormal or heavy menstrual flow including bleeding between periods
• Extreme menstrual cramps in the abdomen and/or lower back
• Pain during intercourse
• Infertility
• Painful urination and/or bowel movements during menses or ovulation
• Gastrointestinal problems, such as loss of appetite, nausea, constipation, and/or diarrhea
• Abdominal swelling and bloating
• Ovarian cysts

I had all of those symptoms, but it is important to note not all women who have endometriosis experience noticeable symptoms. The amount of lesions found do not directly correlate with the amount of pain. Minor endometriosis can cause severe pain depending on the location of the lesions. Some women may even have severe endometriosis and not be aware of it until infertility issues arise.

23 Years Of My Life:

I was diagnosed, via surgery, in 1992, at age 17. At the time, endometriosis was a nondescript disease. It had no reason or cause, and we still don’t fully know why it happens. It still has no treatment or cure, just surgeries to clean it up. All I knew about it in the 90’s was how to pronounce it, how much pain and havoc it wreaked on my life, and I would likely never have babies.

I had three more surgeries over the next 23 years. At my post-op appointments, the surgeons would always say something to the effect of, “I did the best I could, but you are a mess in there.” I had tumors, cysts, fibroids, scar tissue/adhesions, lesions, and always endometriosis or the damage left in its wake. It damaged my bowel, my ovaries, my fallopian tubes, and my ureters.

At 34, I lost both fallopian tubes. The following six years, things really started deteriorating. I went from working out six days a week to some days being barely able to move. Little by little, I stopped working out and I stopped moving.

A day in my life could look like this: I would wake up (if I slept at all), unwillingly crawl out of bed, let the dogs out, grab a cup of coffee, and curl up into a heating-blanket ball. This went from once a month to twice a month. It went from one or two days to one or two weeks at a time. It felt like my insides were literally trying to tear their way out. It took my energy. It took my momentum. It took my stamina. It completely zapped me. It took my healthy self and slowly spun me into merely surviving.

Before the fourth and final surgery, it had devolved into lower back and leg pain, severe abdominal pain (like appendicitis) that left me doubled over, my right side would burn for days, I had extremely long and heavy periods, subsequently I suffered from anemia. I had been misdiagnosed with IBS due only to the adhesions and hormonal upheavals. I was told repeatedly that the leg and back pain and the pain in my right side weren’t related.

Trying Harder:

I remember an appointment where my naturally and extremely thin gynecologist talked to me about my weight. She told me to eat less — I was at about 1300-1400 calories a day. She told me to work out more — I was in a place where one workout a healthy woman could do almost daily, would take me down for days if not weeks. She told me to eat healthier — I was not eating gluten or sugar, and eating only whole and organic foods. I didn’t eat out, and 99% of my meals were home-cooked. When I told my gynecologist how I was eating and working out, she said, and I quote, “try harder!” When I saw the gastroenterologist (for the misdiagnosed IBS) she said my diet was her dream list for her patients, and it was not the diet of a person with IBS.

When I finished my appointments with my gynecologist, I would go to my car, and sit in the parking garage crying until I could get it together enough to drive home.

I was “trying so hard” just to make it through these days of the month. And under doctor’s orders, when I was able, I would work out more, eat less, and try even harder. Only to end up doubled over in pain.

I was told when asking for more than ibuprofen for the pain endometriosis was a “gray-zone” there was no injury or surgery, so pain meds weren’t necessary. When I was finally able to keep a tiny handful of pills around for months at a time, and only take one a day for the absolutely worst days, my GYN questioned me on how many did I take, when did I take them, why not just do massage and acupuncture?

Under doctor’s orders, I meticulously tracked every symptom I had, every single day for three years. I would give her the journal at every appointment and I don’t know that she ever looked through it all. I doubt she had time.

I tried everything I could — alternative treatments, chiropractic, acupuncture, herbs, homeopathics, supplements (at one point, I was taking 45 pills a day), extreme diet changes, mental-emotional control (mind over matter), exercise, yoga, physical therapy, and bioidentical hormones (this offered the most sustainable treatment, but it could only do so much). All of it only helped for a moment or two, and then it was me, my favorite chair, and a heating pad, curled tightly into a ball.

This became my normal. I kept going on the down and out days, but it was spurts of short-lived energy that just barely kept me and my household going. On the miraculous days I felt “okay,” I’d wear myself out trying to catch up just doing laundry, shopping, and housework. I’d use the good days to do as much as I possibly could not knowing when I’d be down and out again. I’d schedule travel between bouts and pray my plans wouldn’t be ruined, and they often were. Endometriosis is one of the reasons I am self-employed. I could not rely on my body not to betray me, and I could not responsibly put the unreliability on an employer.

Around age 37, my yearly pap was expanded into also having a yearly colposcopy. This went on for three years, with no numbing or even a pain pill; they would attack my cervix for colposcopies. With a simple exasperated, “please relax…”

At the age of forty, my doctor did my last colposcopy, laid her hand on my knee, and said, “It’s time.” I replied, “For what?” She flatly said, “For a hysterectomy.” It was all so flat as if she was asking me to give her my earrings.

I should have had the hysterectomy at the last surgery, it is my belief, she didn’t do it because she had just found out she was pregnant. She wanted to preserve the possibility for me because I was still under 40, maybe fueled by her own joyous news. Unfortunately, this is a normal and antiquated view of reproductive years by doctors  ̶  preserve the possibility until 40.

I understood her desire to believe all women wanted children, but as predicted, I had NEVER been pregnant. I had even expressed on multiple occasions I was okay with not having babies. I was not meant to be a mom and I held no issue with being child-free. I would get the proverbial responses, “things change,” “you never know,” “you could suddenly, one day…”

Making the Decision:

This was not a decision I chose lightly. I thought long and hard about it. I spoke to many professionals and friends who had had hysterectomies, and even some who chose not to. I chose to go with the percentages. One woman’s advice really helped; she said, “You know, even if this is only 50% of your problems with pain, then you solve half your problem with this. That’s worth it.”

Please take this seriously. Hysterectomy, should be your last option — not your first, it is not an option for everyone, it is not a cure, and it shouldn’t be chased after.

Sexism in the Treatment of Pain:

I was hung out to dry over the pain. I was made to feel like a criminal for just asking for relief. Thousands of women found themselves with me in this boat when opioids were criminalized, even though the studies showed those of us using pain medication for endometriosis did not abuse our meds. I was offered antidepressants though because, you know, I must be hysterical.

I have never forgotten How Doctors Take Women’s Pain Less Seriously, an article on women and sexism in treatment of pain. I read this eye-opening article when it came out one month before my final surgery. I resonated so much with the story because after it had been determined I needed a hysterectomy; I was told I couldn’t have any more pain pills, and there seemed to be little urgency in scheduling me for this life-altering procedure.

It took me four months to schedule an appointment with the specialist. They weren’t calling me back, they weren’t answering their scheduling line, and I waited and waited. I finally went into their office and scheduled, at the desk, in person.

After my complete hysterectomy (ovaries, uterus, and cervix), the doctor told me afterwards had I waited another 2 months to schedule my surgery it would have been much more complicated, it would have likely meant some kidney and bowel issues because of the scar tissue taking over. I was way to out of it to tell him his scheduling department needed to know that.

Post Hysterectomy:

I laid awake in the very noisy hospital most of the night. I felt I was on the precipice of something amazing. ALL I HAD TO DO WAS LET GO. I felt like finally, I might be able to live and not merely survive each day.

I thought about all the ways I wanted to let go. Let go of my thoughts on what I wasn’t. Let go of my thoughts of what I would be, and just be. Just be. Sometimes some antiquated thought pops up when my joints ache, my back stiffens up, or my knees crack…yes, this is an aging body but now it isn’t entangled in the mess of a “gray-zone” disease.

Many have said to me their 40’s was where they found out WHO they were. They were no longer a student, or maybe they suddenly wanted to be a student. They were no longer in mommy mode, or maybe they decided it was finally time to be a mom. One dropped her 6-figure income career and moved to South America to become a travel photographer. Some became models. I unfurled myself and let all the tension go, I took a leap of faith to start a brand new business, and then two years later a second business.

I will always have pelvic pain, it is an unpleasant fact when you have had 20 something years of endometriosis and multiple laparoscopic procedures, the more surgeries you have the more scar tissue develops. Life is much better now. I do take hormones to protect my health and mitigate any more flare-ups of endometriosis.

From my experience, I will say this, advocate for yourself. You have to be able to say things I was never willing to say. I didn’t argue with my doctor, and I should have. I changed doctors several times. And as often as my last GYN said the wrong thing and made me feel horrible, it wasn’t her intention. She was doing her best with her knowns. The reality was, because I stayed with her she referred me to one of the best surgeons in the Southwest for endometriosis. Doctors are just now recognizing how debilitating endometriosis can be. Sadly, some of them are still operating from antiquated views on the subject.

Things We Now Know:

• There is a decreased risk with a higher BMI. Maybe I was trying too hard to keep a lower one.
• While exercise helps decrease the risk, losing weight may not.
• Medical professionals ignoring my pain did not help my physical well-being and often affected my mental and emotional health.
• I was never referred to a pain clinic to help manage the pain, which is now a general guideline.

Some Endometriosis Facts:

• It is estimated that 1 out of every 8-10 women and girls have endometriosis.
• 70% of women with pelvic pain likely have endometriosis.
• Almost 40% of women with infertility issues have endometriosis.
• The only method of diagnosis is via surgical findings.
• I was extremely fortunate to have been diagnosed at 17 with surgery; it is more common for women to go undiagnosed for 10 years or more.
• Surgical procedures are one of the most proven and effective ways to remove endometriosis, and help with pain. With a 50-80% success rate. However, they can cause more harm than good with inadequate or inappropriate procedures. {Always find a specialist.}
• While hysterectomy doesn’t cure endometriosis, add in proper hormonal care, and the likelihood of it recurring is greatly limited.
• More research is needed for non-invasive diagnostic techniques, and non-surgical treatments.
• An anti-inflammatory diet, including fish and omega 3 fatty acids, can help.
• Being underweight or too thin can increase the risk.
• Having Adverse Childhood Experiences (ACE) including sexual abuse increases the risk of endometriosis by almost 80%. Aside from genetics, I believe this was one of the biggest contributors to my story.

Please know I did not write this for sympathy or attention on me. I shared part of my story because I believe knowledge is power. The pain of endometriosis can be more severe than labor pains, more severe than appendicitis (like I felt), and it is real it is not a gray-zone. If you or someone you know is suffering, please advocate for yourself or them. Seek the help of a professional. Reasons women don’t seek help are embarrassment because it is related to menses, believing this is normal, they are weak, or it is all in their head.

If you would like to read more on current research and ways forward in the treatment of endometriosis, this article is a good start. > The latest in endometriosis research: Ways forward

If you would like to donate to research, read more stories like mine, and/or get involved, please go to > The Endometriosis Foundation of America

If you are in another country outside the USA, please search your area for any endometriosis support, specialists, and foundations.

If you know someone who might find inspiration here, please share with her. It is my hope, my story also gives you an idea of what she could be going through.

I hope you found this post educational and helpful.

Thank you for reading. Please feel free to share.

As always it is about so much more than the hair.

§

Works Cited:

1. Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: Epidemiology, Diagnosis and Clinical Management. Current obstetrics and gynecology reports, 6(1), 34–41. https://doi.org/10.1007/s13669-017-0187-1
2. Fassler, Joe. “How Doctors Take Women’s Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/. 
3. “Endometriosis.” ACOG, https://www.acog.org/womens-health/faqs/endometriosis.
4. Mapes , Diane. “Endometriosis Linked to Childhood Abuse.” Fred Hutch, 17 July 2018, https://www.fredhutch.org/en/news/center-news/2018/07/endometriosis-linked-to-childhood-abuse.html.

Next Suggested Post