Symptoms

Various symptoms of Endometriosis

Share Your Story : Angela

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A woman with brown hair wearing glasses

Angela was 29 when she found out she had Endometriosis.  Now 32, she continues to have pain and problems, despite several excision surgeries.  She lives in Darwen in the United Kingdom and she and her fiancé are the proud and happy parents of their fur-baby, Alfie. They continue to push on and live, despite these difficulties.

Angela’s Journey: I’ve always struggled with painful and heavy periods since the age of about 14. I was used to going months without one and then the floodgates would open and the Hell would start again. When I was 18 I was diagnosed with Polycystic Ovarian Syndrome. To be fair I was quite lucky with my symptoms. Yes I put on weight but thankfully I didn’t develop excess hair. It was manageable. I was prepared for potential fertility issues but I wasn’t overly concerned. And then it all went wrong. So so wrong.

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Share your Story : Amanda

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A smiling woman with brown hair

Amanda was diagnosed with Endometriosis at 22 and had a hysterectomy at 28.  Now 36, she continues to suffer from chronic pain, despite the hysterectomy.  Regardless, she fights through it and she and her husband have adopted two lovely children. She is blessed, even with all she has endured.  May her story aid others in their journey.

Amanda’s Journey: My story started one summer afternoon when I was twelve. My family had gone on a day trip to a park. My period had started that day and the cramps started as usual. This day was going to be a turning point though as the pain reached a point to where I found myself curled up on the floor of our minivan drenched in a cold sweat, praying that I would not throw up as my family picnicked nearby.

At first, these episodes happened a few times a year. By the time I was seventeen, they became a monthly occurrence. I did not understand the significance of the degree of pain I was in. All of my friends complained about their periods so I figured I was just experiencing what everyone else did. My mom took me to my first gynecologist appointment that year, searching for relief. I was started on an anti-inflammatory and told that it was “normal” to have cramps like that at my age. Hopefully, they would improve with age.

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Share Your Story : Lindsay

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Woman with brown hair sitting on a military tank

Lindsay was 16 years old when she was diagnosed with Endometriosis.  Now 21, she lives in Connecticut.  She is a volunteer Firefighter (thank you!!!) while still enduring several chronic illnesses: Endometriosis, Fibromyalgia, Bursitis, and Anxiety.  She doesn’t let it stop her from living!

Lindsay’s Journey: Since I’ve had my period I have suffered with horrible pain and bleeding that was far from normal. My pain wasn’t just in my lower abdomen, but also really bad pain in my lower back. I tried multiple birth controls to help control my pain, but nothing seemed to help. In fact, I had horrible adverse effects. I had suicidal thoughts and it made me anxious beyond belief. Part of the issue is due to the fact that I had my thyroid removed and my hormone replacement kind of mixed with the hormones in the birth control.

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Stress levels may affect Endo

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Graph of how stress affects body mind emotions and behavior

So after a particularly stressful day at the office, I decided to do some writing and soul searching and (of course) research.  In all of the books and articles I’ve read, there has been a comment or chapter stating that stress may worsen Endometriosis.  But why?

How Stress Affects the Body:

Stress may trigger adrenal stress hormones, which may alter heart rates and blood flow.  It may also impair our white blood cell count, which can lower the body’s chances of fighting infection, reduce inflammation or even prevent/limit scarring. Gals with Endo know that inflammation and scarring are two critical components of a painful Endo day.  Stress may also cause or exacerbate problems such as headaches, high blood pressure, heart problems, stroke, diabetes, skin conditions, asthma, arthritis, depression, and anxiety.

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Share Your Story : Josi

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text on a chalkboard that reads Don't Give Up!

Josi is 19 years old and lives in Torrington, WY.  She was diagnosed with Endometriosis just two months ago.  Like so many women, just knowing there was a cause to her pain gave her a little bit of peace of mind and she has begun her journey toward relief.  Josi hasn’t let this pain stop her from living, as she recently married the love of her life and is moving forward with hers!

Josi’s Journey: I started vomiting constantly and experiencing bad pain at 11 years old. I thought it was anxiety, and didn’t get it checked out for a couple years. At 14, I finally had a scope done to reveal a hiatal hernia. I thought, “finally, this is the cause!” And began taking prescribed medicines for acid reflux and IBS. Nothing helped. Another scope. Nothing new.

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Share Your Story : Courtney

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A woman with brown hair wearing sunglasses

Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old.  Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.

Courtney’s Journey:  I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!

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Suicide & Endometriosis

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Two yellow ribbons coming together for Endometriosis and Suicide Awareness

I find it interesting that both the Endometriosis Awareness ribbon and the Suicide Awareness ribbon are yellow ribbons…

Today while perusing Facebook, I ran across a post where a Virginia Endometriosis Awareness group had posted that there’s been 8 women who committed suicide this year due to their Endometriosis.  Where they got their stats, or if it’s just in VA, or…national…or global…I don’t know.  (For clarification on these statistics, see the Comments Section below). But, I do know that that’s 8 too many…and I was struck dumb, literally frozen in my chair struggling not to cry.

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Dead at 27

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A young woman and her dog

A Swedish friend of mind sent me an article about a Swedish gal, Emelia, who died in 2011 due to complications of Endometriosis, and (more importantly) the neglect of her physicians.  Google translate gave me the gist of it.

Emelia was diagnosed with Endometriosis when she was 21 years old, among the usual places it was also found on her intestines.  In 2010 (she was approx. 26) she had been suffering from severe constipation (sometimes for periods of up to 10 days) which we well know is a symptom of Endometriosis.  Over the next nine months, Emelia saw 32 different doctors. That’s right…thirty-two.  Nobody could resolve her constipation, symptoms, or her pain. She sought referrals to an Endometriosis Clinic at the Uppsala University Hospital in the hopes they could help.  But her referral requests were denied.

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EndoInvasion : Stages

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A stage with the Bloomin' Uterus logo centered on it in a spotlight
Our Uterus : center stage!

So there are four “Stages” of Endometriosis.  It’s the doctors way of categorizing the depth of the EndoInvasion in our bodies.  It was developed by the American Society of Reproductive Medicine.   Diagrams of the various stages can be in an article published in Fertility & Sterility back in 1997.

I didn’t know my Stage level and had to ask my doctor.  My Endometriosis was Stage 4, the most severe it can get. Probably because it was brewing inside me undetected for nearly 2 decades. Ugly disease. (Update: As of June 6, 2019, I’ve now had a total of four excision surgeries; each one classified my illness as Stage 4).

The interesting things about Stages: the Stage Level doesn’t necessarily dictate our symptom or pain levels.  Someone with Stage 1 can have severe pain, while someone with Stage 4 may not even realize it.  Just one more mystery o’Endo.

So what are these Stages?  Here ya go:

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