I am a survivor of ENDOMETROSIS! What is Endometrosis?

Here is my story, including my 20-year-old daughter, who is also affected with endometrosis: In 1975, I was put in the hospital for 5 days because of severe pain on my right side. The doctors could never figure out what was wrong but they thought it was associated with my period. I was in 8th grade at the time and…

I am a survivor of ENDOMETROSIS! What is Endometrosis?  Well, it has been equated to a cancer-like disease and believe me, it is!  It grows anywhere and everywhere inside your body and it is extremely painful.  It has been proven that it can happen in young teens as well as women in their late 20’s on into their 30s and 40s.

Here is my story, including my 20-year-old daughter, who is also affected with endometrosis: In 1975, I was put in the hospital for 5 days because of severe pain on my right side.  The doctors could never figure out what was wrong but they thought it was associated with my period.  I was in 8th grade at the time and had just begun my period within the year.

Throughout my teen years, my periods were extremely painful and heavy and I would also have fevers and headaches.  I went to my general practioner in 1983 and he immediately referred me to a gynecologist, who saw me that day and put me in the hospital that night for surgery the next morning.  I was in so much pain that I could hardly walk so I was put in a wheel chair.  It turned out I had endometriosis inside both ovaries (my ovaries had grown to the size of oranges) and so I woke up with an incision across my abdomen from one side to the other (this incision was later used to deliver my daughter, Mary).  My doctor drained both ovaries from the endometriosis, and when I woke up, he said it was very unclear whether I could conceive children.

At 21, this was very hard to hear, so I did as much research as I could back then, without the age of the computer, and I was very fortunate to read a medical journal article that Dr. Rafael Valle was involved with regarding endometriosis and a new state of the art procedure called laparoscopy.  He was out of Northwestern Hospital in Chicago.  At the time, I lived in a suburb 45 miles northwest of Chicago so I found his office phone number (which was difficult to do because no computers) and made an appointment to see him.  I remember I had to wait 2 months to see him but it was well worth it.  He became my specialist and he personally watched how the endometriosis would grow inside me by doing 3 laparoscopies over the span of 4 years.  He kept it in check.

It was always questionable whether I could have children and so the good news is that, at age 29, I married and at age 33, I had my first child (a baby girl) and at age 35, I had my second child (a baby boy).  I had a miscarriage in between.  Over the past 20 years, we have moved from IL to FL to VA.

My daughter is now 20 and throughout her teen years, she has been the mirror image of my body with excruciating pain and heavy bleeding, headaches and fever.  She started to go to a gynecologist early (when she was 15) because I did not want her to suffer like me and if we could find a doctor that understood endometriosis then maybe she would not have as much pain as me.  I took her to my gynecologist in VA who pretty much dismissed what MF was saying about her periods.  Then, MF found a boutique type of doctor in MD that did not really understand the severity of the problem and prescribed some pain medication for her which did not help.

Before MF started college, her monthly cycle became longer and longer and more painful so it was hard to have her away while she was going through all this pain.  She went to New Haven last year to school and it made sense to look for a specialist at Yale.  MF and I both searched the internet and found a specialist at Yale for endometriosis.  We went to the appointment at the end of May and the Yale specialist said there was an 80% chance MF had endometriosis and there was also something weird that she could not tell what it was and it was probably nothing.  The doctor wanted to put MF on hormones after the surgery, but MF is a special case where she cannot take hormones because she has bad reactions.  This doctor did not seem to understand that and continued to pursue the hormone idea.  We came out of the meeting and MF said we need to find someone else that will listen to her needs and help elevate the pain.

We found Dr. Seckin!  MF was starting to go downhill physically.   I made an appointment with Lucy for MF and Dr. Seckin to meet during the first week of August.  It was tiring for MF to travel to NYC but it was well worth it. She was sleeping 15-17 hours a day and had no energy. She was taking one summer class that was totally wiping her out.

We met with Dr. Seckin on August 6 and I explained a little of my background with endometriosis and I explained how I found Dr. Rafael Valle in 1983 through the medical journal and that he wrote about laparoscopy and endometriosis.   Dr. Seckin’s reply was “Oh Raf, he is retired.  He is a good friend of mine.”  Immediately, I felt a connection with Dr. Seckin because if he is a friend of the doctor who operated on me 31 years ago! How AMAZING! I knew that in my heart that my sweet, dear 20-year-old daughter was in the right hands.After he saw the results, Dr. Seckin was absolutely sure that she had endometriosis. The question remained: how bad was it?   The issue that the MRI showed that there was possible kidney involvement so Dr. Seckin referred us to Dr. Brodherson, another godsend.  He is an incredible doctor that will communicate with you himself through text or phone call, no matter what time of the day or night, and is truly an expert in his field.

Yes, on September 11, 2014 in New York City, MF underwent surgery that lasted just over 2 ½ hours.    We went into the surgery thinking that MF was going to need a stint in for 2 or 3 weeks after the surgery and the great news is that she only needed the stint during the surgery.  MF has 5 small incisions around her abdomen so recovery is a slow process.  We saw Dr. Seckin in his office 1 ½ weeks after the surgery and he showed us actual photos of MF’s ovaries.   We could see that the endometriosis was still on top of both ovaries and Dr. Seckin said that MF has a very aggressive type of endometriosis and that he will have to watch it carefully to see if any changes occur, so yes, she will have to undergo more surgery next year but it is comforting to know that she is in the hands of a true expert.  MF will continue to see Dr. Seckin and we both feel so blessed to have found such a wonderful, caring expert and team of experts that will follow MF’ case.

As for me, I am now 53 years old and have two wonderful children. When I was 48, my periods became very heavy again and I had fibroids so I had a hysterectomy.