Patient Comments: Endometriosis - Symptoms

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

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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Comment from: 30years later, 45-54 Female (Patient) Published: March 14

I started having pain at age sixteen, it was not until age 21 I found out I had endometriosis. I have seen several doctors over a period of years and the one I have now has been my obstetrician/gynecologist for over 30 years. I take strong painkillers. I do have some pain but I changed my diet to lots of fruits and vegetables and this has helped. I am at a point in my life that I am so tired of this that I don"t know what to do. I am still not sure about surgery. I just want pain relief. This disease can and will ruin a relationship.

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Comment from: BP, 35-44 Female (Patient) Published: January 08

I have had a hysterectomy to be rid of the endometriosis, but it did not work; In fact it is worse now. I have major skin pain, like an inside out pin cushion is being pressed against it continuously, I cough and it feels like my skin is going to explode. It is so bad it brings tears to my eyes most times. It hurts to have anything against it. It hurts when I move. It's really painful.

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Comment from: 35-44 Female (Patient) Published: December 05

I am 43 and about 4 years ago I started having lots of ovarian cysts, some the size of an orange. My cycle would only last 3 days from start to finish, then in June I had a cycle, then stopped for 3 months and started again in October that lasted 14 days, very heavy flow. I stopped for a week and started back bleeding again and have not stopped as of yet, I have lots of pain in lower back, hips and lower abdomen down to my knees; I've been having headaches almost daily.

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Comment from: Claire, 25-34 Female (Patient) Published: November 20

I'm 32 and been having issues for a few months now, since I came off the pill due to bad mood swings and generally making me feel down all the time. Since I've done this I've been fine! I started getting pains so bad in my abdomen, sides and back and headache. I've had 3 ultra sounds to rule out appendicitis and cysts on my ovaries. I have noticed a pattern that it starts after my period when ovulating. The pain is horrid and I find it hurts after I urinate or add any kind of pressure to the muscles then relax them. Even my breasts start to hurt and after sex it is painful and I sometimes feel sick and dizzy.

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Comment from: sunita, 19-24 Female (Patient) Published: May 22

I have already removed endometriosis or chocolate cyst, and still the pain persists. I took lots of pain killers but of no use. Recently I took leuprolide injection. Last time there was no periods after injecting leuprolide but this time normal bleeding started after taking leuprolide.

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Comment from: Miss May, 19-24 Female (Patient) Published: March 03

I was 15 when I first had pain with what started as cysts and the pain got worse every couple of months till I was 19 and had constant pain. I went in and out of doctor's offices telling me it's all in my head, have you tried going gluten free, etc. After that didn"t work that well I finally got the gynecologist and she tested me for endometriosis. I tried the pill, it worked for months and then had my period on the pill; for 4 weeks I didn"t miss a pill. I tried a different pill, gluten free and Metamucil; again it worked for a couple months then I got my period for 6 weeks straight. The pain got so bad to even get out of bed I was taking T4 and Advil together and could move but still felt it. I found out about a new trail medication called Visanne. It worked as long as you didn"t miss a pill but I have some liver problems from taking it and got most of the other symptoms.

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Patient Comments

Viewers share their comments

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.

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