Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Eventually diagnosed with endometriosis

by Annonymouse

It has taken a long time for me to finally get diagnosed with endometriosis.

I was one of the 'lucky ones' if you can even call it that. I ended up in hospital with severe abdominal pain, after many tests (colonoscopy, endometrial biopsy, CT scans, ultrasounds, xrays, numerous blood tests).

The past 2-3 years I had heavy periods with large clots. I would be so tired during my period I could sleep 24/7. After the hospital stay it was thought I had ovarian cancer since I had a cyst on one ovary, and it was large. Not to mention the CA-125 was over 4,000 !!

After seeing an oncologist, I was scheduled for a complete hysterectomy. I was told they may even have to resection my intestines if the cancer progressed that far. I lived with this for two weeks; wondering what stage cancer I had, how much time I would have left w/my little girls, chemo repercussions, etc.

I don't know how I made it through those 2 weeks before surgery. Fast fwd to recovery room, my first words were "do I have a port" (they said I'd have a port in my abdomen for the chemo) and they said NO ! I never had ovarian cancer, it was very severe endometriosis, coupled w/adenomyosis of the uterus. Plus I had a 'chocolate' cyst on my ovary.

I consider myself blessed by God to be given a second chance,(if you can call it that since I didn't have cancer to begin with). I don't know why I was so lucky - my heart goes out to all the women that have to go through cancer - fighting ordeals.

Never did my gyne ever even hint that I may have had endometriosis. My best advice to all women out there -----> don't ignore what your body is telling you, no matter how immaterial you think it may be. Better to feel a bit foolish for asking a question you think is silly, rather than let things go with a false sense of security.

I endured the symptoms of heavy bleeding, clots and fatigue - then was scared beyond belief when I thought it was ovarian and I could have had myself checked earlier. DEMAND tests from your doctors if they don't offer them. It's worth it.


Name: Anonymous

Title: Mass on ovaries

I went for my usual check up with my gynae on tuesday 3 July 2012 - everything was going well until he looked at my right ovary and said there was a cyst on my right ovary (on the letter to the CT SCAN he mentioned mass). I am going back today 6 July 2012 - I have all the symptoms of endometriosis and he did mention endometriosis - I am just vary scared that it is not ovarian cancer

- During my periods in June I felt extreme discomfort before my period, was in a lot of pain, had diarrhoea and when bleeding started was very heavy with a lot of stomach pains - I did not even want to walk, just needed to be on my bed -

After three days period stopped and all pain disappeared. I am very worried what he will find as he mentioned he is going the hysterectomy route - I hope and pray that all will be ok.

Name: Anonymous

Title: Be sure before you operate

I went in also to have my ovaries removed as they also thought that they were cancerous, but when they went to take them out the specialist had to call two other doctors in to help as instead of taking one hour it ended up taking them over 3 hours to clean up the mess.

All my organs were covered with endometriosis, and it turned out that I didn't even need to have my ovaries removed as they were not cancerous but it was too late.

It was the biggest mistake I have ever made as I went into complete change of life symptoms immediately, so always get a second opinion. Also I have been suffering very bad chronic pain and I think there might be something to do with this endometriosis. The more I read the more it fits my symptoms.


Name: Anonymous

Title: Ovarian cancer scare

Reading these posts brings tears to my eyes. I am almost 4 weeks post op from a total hysterectomy. I had excruciating abdominal pain on a Sunday, took a muscle relaxant, and slept all afternoon. I seemed to be okay that night.

I had an appointment schedules with a doctor for something completely different on Monday. I went to work although very sore then to the doctor. He notices my discomfort and told me to go to ER. One test and a couple hours later I had a young ER doc telling me I might have ovarian cancer. What!?!

Hours later a surgeon was there telling me I was being admitted and would be scheduled for surgery. I had an ovarian tumor ( complex cell) and a CA 125 of 1200. A GYN oncologist met with me and said if they found cancer a hysterectomy and staging the cancer.

Between the pain meds and the whirlwind of doctors, the diagnosis didn't sink in. Fast forward a couple of days to my surgery and amazingly my tumour was benign. An endometrioma had ruptured weeks earlier and festered in my pelvis region thus causing the elevated CA126. They removed the ovarian tumour along with everything else and I am virtually fine.

It was a scary and emotional journey but I feel so blessed for the outcome. Please take care of your selves and respond to what your body is telling you. Bless all of you who are battling cancer. You are in my prayers.

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