Patient Comments: Endometriosis - Symptoms

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

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: K, 19-24 Female (Patient) Published: October 28

I am 21 years old. I had a 7cm cyst on my ovary when I was 17 years old and have since then experienced painful periods and ongoing issues with cysts. About a year ago I spoke with my doctor about the pain I was experiencing and how it got worse. It was painful to have sex, I noticed if I had any gas or had any urine in my bladder the pain was worse and she asked me to see another doctor. The new doctor told me that I have endometriosis. Recently my pain has gotten worse and my periods last longer, sometimes 2-3 weeks or 1 week on then off and on again. I started experiencing large blood clots in my period. They say the average size is about a quarter inch or so, mine have been upwards of 6 to 7 inches. I fear for more surgeries and the possibility of not being able to have children of my own. I am ok with adopting it's something I've always wanted to do. I hope that doctors can find something to end endometriosis for good and that more word and information on the topic is given to young women.

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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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