I had severe “ovarian” pain that doubled me over and made me pass out with my first period at age 13. I felt the twisting hot knives in my ovaries at 13. It never ended. My ovaries were destroyed and eaten through with endometriomas, like pushing pebbles into the ovaries and destroying them, by age 33. At age 33 my ovaries were removed. Endo pain in the ovaries is like a cancer pain, indescribable unbearable pain that at a young age was only with my period. By age 27 the ovarian endometriomas and pelvic endo put pressure on my bladder and I felt the need to urinate all the time and could not sleep because when I lay down all I wanted to do was pee. I wanted to put a bullet to my head. I so wished for death as I had no sleep and was in pain. At age 33 my ovaries were removed. My bladder pressure and sense of bladder infection immediately went away. However, now at age 57 I suffer the consequences of many laparoscopic surgeries for endometriosis that caused rectal prolapses, sphincter problems, vaginal vault droppage, 8 hernias, broken hernia wire etc. My life has been a nightmare of pain and despair due to endo. I am surprised I am still alive. We need a cure for this disease. We also need to treat the pain of the disease like cancer pain. My kidney’s are not good due to so many decades on Naproxen for pain. Pre-cancerous stomach now due to Naproxen use. Endo patients need morphine. I tried to go to work as a teacher on so many pain meds. The pain meds now have damaged kidneys as I tried to go to work for many years living on them  The pain of endometriosis needs to be respected. Women need to get disability pensions easily for endometriosis. Like has been very very difficult for me as people don’t understand endometriosis. Stand up for yourself. State your disease. Don’t make others feel badly or guilty for not doing enough.

When I was 13. My periods got so much more heavier. I was having horrible bloating and terrible PMS/headaches.  But the most severe start of all my problems were  after my c-section with my first child, when I was 28. The pain became unbearable, kidney pain, back pain, cramps, diarrhea and migraine. Then I had my second and last child, after her I started getting endometrioma’s on my left ovary. Eventually I had to have a totally hysterectomy, by choice. My uterus was so Inflamed.

I feel like the c-section just spread the endo all over like dandelions blowing in the wind.

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.

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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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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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.

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.