Patient Comments: Endometriosis - Experience


Please share your experience with endometriosis. Submit Your Comment

Comment from: Ana, 25-34 Female (Patient) Published: April 11

I had terrible sharp pains since age 12. Now I am 26 and just found out 2 years ago it was endometriosis. The pain is awful. Premenstrual pain starts about a week before the actual bleeding. I have knee pains, vomiting, loss of appetite and immobility. But I don't experience back pain. If I eat before the pain starts, sometimes the pain is so extreme it causes me to throw up. And if I don't eat, I will bring up bile from my gall bladder. Yes, all because of the pain of endometriosis. No fix for me as yet.

Comment from: Syrephine , 35-44 Female (Patient) Published: April 03

My doctor here in Japan put me on a small dose of progesterone to help with bleeding from endometriosis, but after a week and half my period started back when I had an orgasm with my boyfriend, and now the bleeding won’t stop again.

Comment from: J, 19-24 Female (Patient) Published: October 03

They stopped making the only birth control pill that worked for me 8 months ago, so I got off of birth control all together. For the past 7 months I've been experiencing hellacious periods. I'm dizzy all the time but the dizziness worsens on my period week, my cramps are excruciating on the first two days of my period, and I get acne, aches and pains, weakness, nausea, feverish feeling, burning, FATIGUE, etc. I've had ultrasounds and tests done on my blood and it’s all been normal. I hope I get answers at my appointment on Thursday.

Comment from: [email protected], 65-74 Female (Patient) Published: May 08

I worked in nursing for 17 years. After my 3rd baby I had uncontrollable bleeding for about 3 weeks every month. I always had a change of clothes with me because I was also passing clots. One day I just had to go home and one of the doctors asked if I had ever been checked for fibroids. Well, since nothing was private on that floor and female organs were just everyday discussion, I went to him and sure enough I had 2 big fibroids. I was 43 and a widow, so I had a vaginal hysterectomy with my ovaries intact. It was magic. I picked up a pizza in the lobby that evening and I live now like it never happened. It is obviously not the solution for everyone’s endometriosis, but it sure was for me. Men have it so easy!

Comment from: Sophia , 19-24 Female (Patient) Published: April 03

As long as I have had periods they have been irregular and extremely heavy. My cycles would happen anywhere from 130 days to 33 days, and I would bleed anywhere from 1 to 9 days. My periods were often accompanied by painful bloating and cramping. My doctor had originally thought that I had low progesterone levels and started me on NuvaRing so I was having a regular period. It wasn't until I started to feel bumps on my cervix and went in to get a Pap smear that I was diagnosed with endometriosis. I still have painful bloating and my periods still have a little unpredictability to them. I was told I might have to have a scraping procedure done and that infertility would probably be an issue I would have to face.

Comment from: Epiphany20, 25-34 Female (Patient) Published: July 03

I have been diagnosed with endometriosis for 2 years now and my last cycle was more unusual than the others. I pulled a 2 to 3 inch clot or at least what I assumed was a clot, out of myself. This one struck me as a little too firm so I placed it in warm water. The result was very different than before, it never dissolved, and in fact it actually looked similar to tissue.

Comment from: LJ in So Cal, 25-34 Female (Patient) Published: July 08

At about the age of 24 or 25 I had abdominal pain. It was worse when I sat down in the car to drive. Being bent over, the seat belt and lifting leg to drive made it so much worse. I had an obstetrician/gynecologist take care of the endometriosis problem through surgery. I had a quick recovery and life got back to normal. Don't let anyone tell you that the pain is normal or that you have to put up with it. You have options!

Comment from: Fibrooks., 25-34 Female (Patient) Published: March 13

My endometriosis is so unpredictable. One day I'm fine and I can take care of the kids and clean and go out. Next day I could be crippled in pain and nothing takes it away. I can't move I have to stay very still with a hot pad and pillow pressed into my abdomen. I am getting an injection next week that will start my menopause and hopefully kill the rest. I do find it very hard for people to understand the pain. My husband gets annoyed when I just all of a sudden can't move. Keeping my mind from drifting to negative thoughts has been my challenge because there is a cure and I will be fine someday. If women want to talk to me about my process that I'm about to go through they can. The injection will be given once a month for three months then I have to have a hysterectomy. I am 34 years old.

Comment from: sick&tired, 45-54 Female (Patient) Published: February 24

I just had my 5th surgery due to 'female issues'. Finally I was told it is endometriosis. At age 47 I had part of cervix removed, at 49 had uterus removed, at 52 had tubes removed, and at 52 had rest of cervix removed. I was always told it was scar tissue as to why I bleed and had pain. When the pain overtook me they finally did CT scan and found kidney failure and cysts on ovaries, may be cancer. I just had the surgery to remove dead kidney, ovaries and nodes. No cancer but the implants caused from endometriosis will now stop because the ovaries can't produce them anymore.


What Is Endometriosis? Symptoms, Causes, Treatment See Slideshow
Comment from: Fiona White, 35-44 Female (Patient) Published: September 14

I have had endometriosis for 5 years. In this time, I suffered with chronic pain, and recurrent bleeding, it's just like a cancer, because I cannot find an effective way. The doctors suggest me to take a surgery, however, I try the herbal way, taking Fuyan pill. I'm not bleeding now, I hope it will work.

Comment from: betty, 25-34 Female (Patient) Published: August 26

I was diagnosed with endometriosis about 5 years ago, and I have a 6 years old child. Recently I started having sharp pains, also I have back pain from time to time. Sometimes back pain is low middle and sometimes low right side. I’m scared of having surgery.

Comment from: monica, 35-44 Female (Patient) Published: September 06

After five years of trying my husband and I are finally expecting our first baby. I had seen three or four infertility specialists and diagnosed with unexplained infertility, meaning, they had no idea why we couldn’t have a child. I always felt sad and guilty. After four years, of no success, finally I found the Fuyan pill suggested to my doctor, and finished my first month treatment. On my second month, I became pregnant. All of my infertility problems were related to endometriosis, which were taken care of by medication. I hope any women trying to get pregnant finds a doctor as good as mine and finds themselves as lucky as we are.

Comment from: Noneofyourbusiness, 25-34 Female (Patient) Published: May 05

The notion of a higher risk of the condition of endometriosis being linked to higher BMI is ridiculous. I know plenty of women who have low BMIs and some who are even anorexic and have endometriosis. As someone who used to have a higher BMI and a sufferer of severe endometriosis, I find the notion of this correlation ridiculous. It gives doctors an authoritative stance to tell you, 'oh, you're just fat that's why you have this.' Well let me tell you, as a person who lost 150 plus pounds, and still has horrible endometriosis, what is their excuse now!

Comment from: lilmama, 19-24 Female (Patient) Published: January 05

I have pains from endometriosis that makes me want to cry; getting pregnant helps with the pain.


Endometriosis occurs deep inside the uterus. See Answer