What were the symptoms of your endometriosis? Submit Your Comment

Comment from: Serwaa, 35-44 Female (Patient) Published: January 23

I've been having pain in my right ride for 4 years. It's on my around my ribs and under. The doctor thinks I have endometriosis of the diaphragm. The pain is awful. I'm on tramadol, morphine, buprenorphine patch. I've been on norethindrone for 1 year, didn't help. Now I've been having Zoladex injection every month, and still in pain. I'm always contemplating suicide because I'm in pain 24 hours. I've told the doctor to go look around my ribs because that's where the pain is.

Comment from: Eve80, 25-34 Female (Patient) Published: September 24

About 4 months ago I had two cysts removed through laparoscopy. Doctors found I have endometriosis. Removing the cysts did not relieve my horrible cramps. I also have 4 fibroids which were not removed. After surgery I have not been feeling well. I always have cramps and I'm getting my period more frequently, sometimes twice in a month or 2 weeks early. I was put on birth control (you get your period every 90 days) which I just started with last period 3 weeks ago and ever since I started them, I've been spotting and I'm getting my period again after three weeks and I'm not supposed to with these pills.

Comment from: 35-44 Female (Patient) Published: March 29

I hope this helps all women out there with endometriosis. I was diagnosed with endo when I was 35 (I am now 44) after having had terrible period pains all my life (terrible cramps, leg pain, back pain, my life would be miserable for four or five days per month). Anyway, I had surgery, and they removed both cysts through laparoscopy (one was six by four centimeters, the other one by two centimeters) and only 15 months later I had to go in for surgery again. Only this time, surgery was a lot more invasive since the operation was like a C-section but without the baby. This time, they were able to remove another huge cyst but were able to save the affected ovary. Surgery was even more complicated this time around because apparently I had scarring in my intestine, liver and kidneys. After this, I started on a hormone treatment that lasted six months to avoid menstruation. Needless to say, I do not have children. After going through this, which was pretty traumatic both emotionally and physically, I started looking into alternative treatments. I found a Chinese doctor who completely changed my life. I was treated with electro-acupuncture for about a year (at first, three times a week, then twice a week for several months and then once a week), and Chinese medicine has kept me away from surgery all these years. I have no pain whatsoever when menstruating (whereas before the cramps were so bad I could barely walk) and my quality of life has increased in a way that I have never felt better. After my second surgery my doctor said that probably within a year I'd be back for a hysterectomy. Thankfully, I have been able to keep endometriosis away all this time. For whatever it is worth, the Chinese doctor recommends to keep away from ingesting anything cold ... always hot or room temperature (apparently cold is bad for blood flow) and also, stay away from tampons. I really hope this information helps because at the time, I thought there was absolutely nothing in the world that would help me and really Chinese medicine has kept me both sane and healthy.

Published: September 10

I am a 26 yr old women who just had my left ovary and fallopian tube removed! When the doctor took it out she said it should have been done years ago she said she did not want to take the right one if we didn’t have to because I am so young. That was 3 weeks ago today and the pain on the right side it so bad that I know I have to call and go back. I always knew that I wanted to adopt but the realization that I may never be able to have children is terrifying to me. I suffer from depression and anxiety to begin with and I just don’t know how do process and deal with this.

Comment from: lynne, 35-44 Female (Patient) Published: November 29

I recently had a major scare in my life when I had horrible pain in my stomach area I thought I tore stomach muscles but I didn't. I never went to the doctor for my yearly checkup because I thought I was healthy and it was embarrassing so I skipped it. Well it ended up I was in so much pain I could barely stand it. I finally broke down went to the doctor had a cat scan done and found a tumor my ovarian cyst was huge it ended up weighing 41 lbs! I was so scared I thought I was going to die. It ended up when I had emergency surgery it took 2 surgeons to remove it; if it burst I could have died. It was attaching itself to my organs and had its own blood supply. My lungs ended up hurting and my ribs ached! I was miserable. I came out of a 3 1/2 hour surgery with flying colors have over a foot long incision w over 53 staples which saved my life literally. I look at my doctor as God now. He gave me a second chance at life. I will never miss my yearly check up again. Please you owe it to yourself to go to that appointment.

Comment from: drewbaby08, 19-24 Female (Patient) Published: January 10

I am 21 years old and I have been having stomach and back pain for about 4 years. For the first couple, I didn't know what it was, as my pain was in several areas around my abdomen. I had a ton of (huge, expensive) tests done and the result: nothing, everything looked great and I got a lot of weird looks from doctors and nurses wondering why I had them done. My doctor subscribed me on birth control to help with my pain. It was both during and in between periods. Since last February my pain has been pretty extreme. I ended up with a UTI pretty frequently while I was at school so I talked to a doctor (not my regular doctor at the time) and he suspected Endometriosis. I was really nervous and scared because I didn't know what it was but all I knew is that it didn't sound good. So I consulted my doctor back home and she agreed and since I have had to switch pills at least 4 times, she was getting concerned. I have a heating pad that I warm up every single night because I am constantly in pain. I had a diagnostic laparoscopy in November 2011 and they did find it.


Pelvic Pain: What's Causing Your Pelvic Pain? See Slideshow
Comment from: sssss, 19-24 Female (Patient) Published: October 04

I have endometriosis and I have intense back pain and pain during menstrual periods.

Comment from: Shanna M., 25-34 Female (Patient) Published: September 20

My first symptoms was painful cycles that worsened and became cysts, tumors, precancerous cervix, hysterectomy & other procedures. I'm 34 now and I’m still having problems.

Comment from: fedup, 19-24 Female (Patient) Published: November 02

I'm 23 years old and have been suffering from painful periods for the last 7 years, the pain has increased over the last four years so severely that I can't walk without being hunched over. The pain makes me curl up in the fetal position unable to do anything but cry. The pains alternate between feeling like I’m being stabbed repeatedly and feeling like my ovaries are going to burst. The pain goes right through to my back and I get severe diarrhea with each period. I have been to numerous doctors over the years who have never been of any help only offering pain killers instead of assessing the cause. Finally I found a doctor who is willing to take further action and I am having a laparoscopy in coming weeks. I'm not sure if endometriosis is the cause for certain but I know that something is not right and am relieved to finally be doing something about it, although I got pregnant at 16 years old and lost the baby, I have been unable to get pregnant since and have expressed my concerns of infertility to those doctors. The frustration of not being listened to has left me feeling helpless and suffering in silence all these years. I only hope that not too much damage has been done as I would like to have children one day.

Comment from: 35-44 Female (Patient) Published: August 17

I had none of the associated symptoms; my periods were short and painless. I had normal cramping just prior to my periods and I had no reason for concern. The only warning I had was a severe abdominal pain, so severe that I went to hospital. They found a large cyst attached to my left ovary and I was told that I was lucky it hadn't burst. The cyst was removed and eight months later another cyst was removed again by keyhole surgery. Three years on and I am using the pill as a 'preventative' measure and I feel exceptionally lucky that I have escaped so lightly. I've read everything I can find about Endometriosis and just wanted to inform others that there are no hard and fast rules when it comes to symptoms. The most important thing is regular and thorough medical examinations, in my experience with private healthcare.

Published: September 10

I experience the worst pain during and after intimacy the pain is sharp and deep I can feel it in my abdomen in my lower back and sometimes in my rectum. From there the pain shoots up and I can not walk I end of in the fetal position for hours until the pain subsides enough for me to move. I have had a fibroid removed 8 months ago and these pains have gotten worse since. I am in the process of speaking with my Doctor about my options. I am 30 years old and this is affecting my love live I have to avoid or turn down sex in fear of the onset of pain that will follow if I do engage myself.

Comment from: Annie17, 45-54 Female (Patient) Published: March 29

I am 44 years old with no history of abnormal bleeding or menstrual cramps. My last cycle lasted 10 days which is abnormal seeing that my cycle normally lasts 3 days. My last pap was normal but my doctor has referred me for an ultrasound and an endometrial biopsy because I have noticed some clotting during this cycle. I am terrified of what my diagnosis could be.

Comment from: Ucantcme, 35-44 Female (Patient) Published: March 10

I started with painful menstruation at a young age but then about 15 years ago lost weight very quickly, had bad stomach cramps and felt like I had the flu. After being diagnosed with mental illness, constipation and other conditions by doctors that could not find an answer I started to have cysts rupture and internal bleeding. My gyno put me on Lupron injections which just increased the cysts. Again, my gyno refused to believe that I could have cysts while I was getting the injections, until I was hospitalized for internal bleeding again (and cysts which had not yet ruptured). I was then told that I had endometriosis and that it caused the ligaments holding my uterus to weaken resulting in my uterus falling into a right angle. A new gyno told me this was impossible and I must have misunderstood. At this time I have an intense grinding pain at the tip of my tailbone, my menstruation has stopped completely and I cannot do anything but manage to get myself to work and back home. It has been four and a half years since the tailbone pain. I did have endoscopic surgery twice in the beginning and was advised that the endometriosis is so deep and in such sensative areas that it cannot be removed. I was told I am just going to have to learn to live with it. I am prescribed 150 mcg Fentynal(duragesic patches) changed every 48 hours, Magnacet, sleeping meds and nuvigil. I can no longer attempt to find help and feel like giving up. I am 44 so the chances of ever having children or getting married have been stolen by this disease. I am tired. I have tried nerve blocks that did not help. The numbing for the nerve block did completely rid me of pain but only for a very short time. I cannot feel the local injection when I am told I should feel stinging. I need help.


Endometriosis occurs deep inside the uterus. See Answer
Comment from: BUBCROnAZ, 35-44 Female (Patient) Published: December 30

I am 38 years old and was diagnosed with endometriosis at 20.At that time the doctor I was seeing said, after my first laparoscopy, that I should highly consider a hysterectomy as soon as possible after finding several growths of endometriosis during my surgery. Well needless to say, I didn’t believe that yet due to the fact I wanted children. So since then I had another laparoscopy at age 23 and could not get pregnant, so I went to a doctor who specialized in endometriosis and fertility. My doctor was amazing! I had to fast for 4 days, which was not fun, but she was able to find a hidden tumor and tons of growths all over my female areas and my intestines. I was then put immediately subject to steroid/hormone injections for a few months, and within 9 months after, I was pregnant with my now beautiful, 13-year-old daughter. Since then, I have had one more scope in 2003 and I am now having the same symptoms of painful intercourse and periods, and pain in my ovaries at random times. I am now ready to have that hysterectomy. I am saying all this to say, ladies, always get a 2nd opinion when you are dealing with a permanent solution to a possible temporary problem.

Comment from: Norma Jean, 45-54 Female (Patient) Published: October 21

I experienced a variety of pains. Some days I have sharp pains and other days just a dull aching pain. I was just diagnosed this morning so all the pain and discomfort is all just making sense now.

Comment from: jonigirl, 75 or over Female Published: July 01

From age 13 to 36, I was in horrible pain monthly. Vomiting, fainting, IBS. All I got from the medical community was that I was a drama queen. A miracle happened at 32! I got pregnant! But after a lovely baby boy was born I went right back to the same symptoms. My OB-GYN saw me and diagnosed endometriosis. I was taken in through emergency, not even able to stand. They removed several cysts wrapped around my internal organs. They also removed one ovary and part of the other, still leaving me able to get pregnant. I had 2 adopted children and one natural. Then 8 months later, I was hospitalized again and a total hysterectomy done. I had a total of 11 cysts, some as big as grapefruits. I am so glad that doctors are paying more attention now and doing something for women before they get to the stage that I reached. Speak up, ladies, and make sure that you are heard.

Comment from: Pam, 55-64 Female (Caregiver) Published: June 11

From the age of 18 to 50, I had really bad lower abdominal cramping starting the day before my period began until it ended. I was unusually tired. Until my 30s a few years after my daughter was born, my periods had been regular and lasted about 5 days. Then, they began to last longer and became heavier and the pain was worse. I especially had lower right abdominal pain. My doctor had a CT scan done and said I had an ovarian cyst. I continued to complain off and on to my doctor but he'd just prescribe higher doses of anti-inflammatory medication. When I was in my 40s, he finally sent me to an OB/GYN. He did a laparoscopy and said he could see no endometriosis. As my periods became heavier, I became anemic and the pain caused me to miss work more....my doctor sent me for a vaginal sonogram and a large mass was detected on top of my right ovary. The OB/GYN wanted to do a removal of the mass, but I asked him to do a total hysterectomy so I wouldn't have to deal with the pain and anemia any longer. For quite some time, I felt betrayed by the MDs who I believe mismanaged my case all along.

Comment from: Suzy, 45-54 Female (Patient) Published: April 29

I suffered from endometriosis at age 40 after giving birth to my last child. The pain came in waves not dissimilar to contractions and I took strong drugs to mask the pain. Occasionally when a bout was really bad, I would need to be seen by a doctor for pain killer injections. My periods were so heavy that I leaked through layers of maternity pads and had many embarrassing moments. I was admitted to the hospital and the surgeon cut out the endometriosis but cautioned that it may come back. Two months later I was in more pain than ever and was almost house bound. I was admitted to hospital again for exploratory surgery but I knew that it was likely at least one ovary would be removed. My condition was severe and after surgery I found out that I had needed a total hysterectomy. Although I went through early menopause with some extreme symptoms, nothing has been as bad as the pain of endometriosis. I am now 49 and have since menopause gained 15 kilos for no apparent reason. I’m looking at herbal remedies to try and balance my hormones at present so I can lose weight. I had by some miracle managed to have children but at 40 I knew I was not to have any more so a total hysterectomy was a good thing for me. I am pain-free and live a normal life so I am grateful for surgical intervention, although I know it is not a solution for everyone.

Comment from: cm630, 35-44 Female (Patient) Published: November 05

I am 43 and my pain is severe at the onset of my period and will last through day four or five. I have loose stools and I had a difficult time controlling my bladder. I have three good weeks per month but, suffer dearly for five to seven days. Four Advil every three to four hours helps but it’s not good on the stomach. I have been to several doctors who all say the same thing -- that outside of strong drugs with bad side effects or hysterectomy, there is not much more they can do. I continue to wait for a cure :)

Comment from: Elisha422, 25-34 Female (Patient) Published: March 29

I’m tired everyday of having this pain. The treatment also makes me very sleepy. It is affecting my over all daily life. I wish that there was a cure for this. I can't take it anymore. I am also scared of having a hysterectomy. I don't think this is the cure.

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