Patient Comments: Endometriosis - Symptoms

The symptoms of endometriosis can vary greatly from patient to patient. What were your symptoms?

Comment from: JMM0803, 25-34 Female (Patient) Published: September 15

Ever since I started menstruating, my periods were always heavy lasting 9 days or longer, and very painful. I went on birth control at 17 which helped immensely. I came off birth control and quickly became pregnant, back on birth control and then off and pregnant again (5 times, 3 living children and 2 miscarriages). I had my tubes tied at 24 and the heavy periods and cramps came back. For many years I simply thought it was just normal to have heavy painful periods. My periods have gotten increasingly worse over the last 5 years and I was diagnosed with menorrhagia. I've been back and forth to doctors' offices for heavy cramping and bleeding, bloating, GERD, constipation, diarrhea, stomach pain when having a bowel movement (ruled out Crohn's), pain when urinating and needing to urinate often (no urinary tract infection), mood swings, weight gain and fatigue (thyroid is normal), headaches, lower back pain, pain during sex (no sexually transmitted diseases), etc. I was just seen today after taking Monistat for what I thought was a yeast infection. I started having severe cramps and stomach pain (nothing new since my period is due in a week). What concerned me was my discharge was tinged with blood. Everything came back negative, except that I have numerous cysts on both ovaries. I have had cysts in the past since I was 16, with three having had burst. The technician who did my sonogram today mentioned endometriosis and asked if I have ever been tested for it. They recommended I see an obstetrician/gynecologist as soon as possible for the cysts since I have so many. Perhaps this could be the answer to all my problems.

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Comment from: GIGI, 25-34 Female (Patient) Published: April 07

I was about 23 years old, had three pregnancies. It started with a big pain on my belly. I thought it was a normal menstruation pain. I spent 8 months bedridden. The pains went from my lower back, across my belly and down till my knees. If I lay back, I was not able to move. If I sat down, I was not able to stand. That's how hard the pain was. They did a couple of tests, mixed medications, heavy medication, etc., until they finally knew it was endometriosis. I started taking birth control pills, and magically the pain was gone. It was all about regulating my menstruation system. But years later I stopped using it. Bad idea. Pains are back, but at least now I know what it is and how to deal with it.

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Comment from: madeline.lowery, 19-24 Female (Patient) Published: June 12

I was diagnosed with endometriosis after an ectopic pregnancy when I was 21. When I'm having my period the pain in my pelvis is so great during this time that I'm only able to be active for about a half hour before needing to sit or lay back down. Over the counter medicine does seem to relieve my pain. And applying heat helps significantly. Also during menstruation my lower back aches like it is bruised and I get so exhausted that I fall asleep doing anything where I sit still for a few minutes. It's truly debilitating for the days that I'm bleeding.

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Comment from: Jean, 55-64 Female (Patient) Published: May 21

I am 58 years old. I was diagnosed with endometriosis at 16. The doctor said I would probably never have children. I hadn"t even graduated from high school yet and I was devastated. I had been having so much pain and heavy bleeding. The pain would cause me to vomit and I would have to leave school. I married at 19 and continued to have pain, but birth control pills helped. Unfortunately I had to stop taking them due to migraine headaches associated with the pill. I still dreamed of having my own child, but the doctor said my chances were one in a million. I found another doctor who treated infertility and under his care I beat those odds and had a wonderful son. At 37 years old I slipped and fell and a chocolate ovarian cyst broke inside of me. I hemorrhaged for 5 days before I was taken seriously and surgery was done. I nearly died from blood loss and was extremely ill. Eight weeks later I had a total hysterectomy. My health was restored and I felt wonderful for the first time since I was a young girl.

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Patient Comments

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Endometriosis - Treatments Question: Were there any effective treatments for your endometriosis?
Endometriosis - Infertility Question: Is endometriosis the cause of your infertility? If so, what treatment options have you tried or been given?
Endometriosis - Diagnosis Question: Describe tests or exams that led to a diagnosis of endometriosis.
Endometriosis - Experience Question: Please share your experience with endometriosis.
Endometriosis: Diet Question: Please share your experience with the endometriosis diet?

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