At what age did your first endometriosis symptoms start?

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Each patient has a different beginning to their endometriosis journey at a different age. Age sometimes has been a factor that makes doctors disregard endometriosis despite its significant impact on a person’s life. Unfortunately, we still see patients being denied care at the beginning of their diseases or later despite having endometriosis symptoms, all because their age was not “”typical.” A part of this problem is due to many people not being aware of how endometriosis can start at different ages. Therefore we wanted to invite you to talk about the age that it all started and your initial symptoms. Someone will read your story and find an answer to many problems because of endometriosis.

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The all-out-something-is-wrong symptoms began at 48!!  But looking back I had all the subtle and minimized symptoms (by my doctors). Those subtle symptoms were present since my 20’s or maybe even younger! But at 48 my body couldn’t take it any every symptom began raging to the point where I couldn’t function at all.

  • Nancy Chadwick answered 2 weeks ago
  • last edited 5 days ago
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My endometriosis symptoms first started when I was 11, with my first period. Between the pelvic and abdominal pain, the heavy bleeding and the feeling of weakness, I knew something was very wrong. It took 22 years to finally get a laparoscopy and diagnosis.

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14

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Looking back I realise a lot of my symptoms started before I even got my first period. I started being rushed to hospital with abdominal pains at age 8, but that got progressively worse and more regular visits when I got my period at age 12. From 12-15 I was in emergency almost every month and frequently misdiagnosed with bowel issues which were later treated as IBS (granted I’ve also been diagnosed coeliac since then, the same year I got my endo diagnosis, but treating coeliac disease didn’t alleviate all my bowel or abdominal symptoms,  which usually coincided with my period).

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25

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My symptoms started when I was probably 14 or 15. I had no idea until after my endo was discovered and my excision at age 36 that most of my standard period issues were endometriosis related, including intensely aching thighs, digestive issues, migraines, shoulder and rib cage pain, breathing issues when exercising during my period, sciatica, intense abdominal and back cramps, and (later) infertility, painful sex, tight and painful abdomen. I only figured most of it out afterward, when many of the symptoms disappeared altogether or were identified by my surgeon as caused by endo adhesions.
No one had ever told me about endometriosis or anything about the symptoms. Ever.

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I was 8 years old when I started with symptoms. It started with abdominal pain, changes in bowel movements, nausea, energy level, appetite. They thought I had Crohn’s disease. That was ruled out with an endoscopy and colonoscopy. I got my period at age 9. They were long, heavy and excruciating. My first ovarian cyst was when I was 11 years old. It was the size of a grapefruit and no surgical measures were taken. I was started on hormonal birth control for “symptom management” and management of probable endometriosis at age 11 and have not been off for 20 years. Long story short- it took over 18 years to receive proper diagnosis and treatment with an expert excision. I truly hope this helps someone else, especially someone young, because it can happen. It was me.

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