Maria’s Endometriosis Story

My name is Maria and I live in NYC. I’m 37-years old, and a speech, language, and hearing pathologist with a dream of one day becoming a physician’s assistant. This is my endometriosis story.

I got my first period at age 13. However, unlike all my friends, I had awful pain and a lot of bleeding. No one could ever relate to me, so I learned to just live with the pain, the bleeding, and kept quiet so my friends would not ostracize me.

The first visit to the gynecologist

This went on for years until my first visit to the gynecologist at age 19. The doctor was great but said that probably this was just how my body was. He explained I had dysmenorrhea and put me on birth control pills. I tried every single one that was on the market but nothing helped the pain and just made my anxiety disorder worse.

The first “encounter” with the term endometriosis

At 23, I got engaged to my high school sweetheart, who I had met, and started dating at age 15. I remember taking my fiance at the time to see another OB/GYN. This doctor was the first to throw out the term endometriosis. He told me in order to get a real diagnosis, I would need to have an exploratory laparoscopy. My family and I discussed this but having surgery without a real condition wasn’t something I thought I needed. I was young and I was scared even if I was more afraid of not having a family with my best friend, the man I loved so much.

As the years went on, I suffered more and more. I had many episodes where I saw some of the greatest doctors but not one could tell me definitively what was wrong. It always led to possible appendicitis or ovarian cysts but I never had a concrete answer. After all tests, it was always probably related to gastrointestinal problems since nothing came back positive.

I got married in 2001, and in 2003 while doing blood work, I noticed that my C-reactive protein was extremely high. I asked my then primary care physician to send me for an ultrasound since I was having pain. But because no other doctors had ever found anything in the past, she refused.

Discovering my endometrioma

I was not going to settle, something was wrong and I felt it. So I just took myself for an internal/external ultrasound and there it was, a 6.5 cm endometrioma (chocolate cyst) on my left ovary.

I’m glad I listened to my body and glad I took my health into my hands before it ruptured inside of me. I went to a family friend who is a surgeon who sent me to one of the best OB/GYNs. This new OB/GYN explained that he would remove the cyst and try to save my ovary and that after the surgery I would not experience any more pain.

My open laparotomy

I had an open laparotomy on June 2, 2003. When the doctor went in and lifted the cyst from my ovary, the endometrioma ruptured inside my peritoneum and I lost most of my ovary. It was an extremely painful surgery and after everything was sent to pathology, I was diagnosed with stage IV endometriosis. The doctor told me to get pregnant or go on Lupron to put me in menopause but that was about all he could do. The pain was actually worse after my surgery.

Getting pregnant and losing the baby

Two years later, I surprisingly got pregnant. I was in Greece when I found out and went to a great doctor and the best hospital. However, every week my levels were not going up as they should and my sonograms just were never in conjunction with my last menstrual cycle. They told me I miscalculated but I know I hadn’t because every sexual encounter hurt so bad that this, unfortunately, wasn’t common practice. After nine-plus weeks there was no fetus only a sac. I was heartbroken.

Losing a pregnancy is very hard especially when you’ve dreamed of children your whole life and made so many beautiful dreams for so many years with the person you love most in the world. I must say, I was and am lucky to have such a wonderful family and an incredible husband.

The new physician who had taken over my old physician’s practice saw all my sonograms and confirmed that it was a miscarriage. I was still in pain every month and every day. I felt exhausted all the time, and I found a million excuses not to go places and if I needed to I had to arrange everything around that time of the month.

Huge blood clots

The pain was worse every month the bleeding was so heavy and there were so many huge clots. If you walked in on me in the restroom you would think you were walking into a crime scene. When I first got married and my husband saw me he wanted to take me to the hospital from all the blood and pain I had. I wear three overnight pads together which I must change every fifteen minutes since they become filled and overflowing with blood. I have second and third-degree burns in my abdomen from heat pads and blankets because it’s the only thing that helps but I can not feel the intensity of the heat since my surgery severed my abdominal nerves and I never regained feeling. It wasn’t a way to live.

One week prior to menstruation I was in pain, the 7th to 10th days of my cycle was horrendous, and the week after my cycle was awful. That left me one week of normalcy.

The PCOS diagnosis

My gynecologist ran tests and diagnosed me with PCOS. My doctor was against having another surgery stating it would just cause more scar tissue. I was blown off every time I asked for help and was told to just get pregnant and that that would cure things.

In November of 2010, after a hysterosalpingogram (HSG) I found out we were pregnant. I was so happy but terrified as well. On Christmas Eve, at seven weeks, I miscarried our second pregnancy. I lost hope of getting pregnant or for any doctor to help me. I gave up and learned to go live with the fact that I may never have my own child.

Then, I switched doctors, and luckily my new doctor now had found my thyroid problem, found my PCOS, and adenomyosis but completely ignored my endometriosis. One year ago, in May 2013, I had a cyst that was about to rupture and asked her why the pain won’t stop, why is it getting worse and instead of understanding she turned to me and my husband and said:

“You have PCOS go home and read about it! Forget about endometriosis! Go see someone for your anxiety.”

I was so hurt.

At this point, I thought I was done with all gynecologists and with the idea of having a family.

Meeting Dr. Tomer Singer

I went on a visit with a family member to a reproductive endocrinologist named Dr. Tomer Singer and after seeing how he was with them, I finally arranged to see him myself. It truly was the greatest decision I’ve ever made. He’s not just an incredible doctor but he’s an amazing and caring human being. He listened to me, he ran tests, and after I expressed to him the pain I was having, he said it’s your endometriosis so before we start a cycle of IVF, I want you to see Dr. Seckin.

I said THE Dr. Seckin?! I have followed Dr. Seckin’s career since Padma Lakshmi came out with her endometriosis story, and her ability to have a child all because of this extraordinary doctor. Dr. Singer set everything up and I went to see this wonderful surgeon. What can I say about Dr. Seckin? He knew what I felt before I even told him. He listened to me and explained my symptoms and believed my pain. From day 1, he gave me hope but was honest and straightforward. His great nurse Lucy held my hand when the pain was so bad. I truly have no words. His team is incredible. From Kim and Lucy who makes everything better and are so helpful to Dr. Ansari the great colorectal surgeon. Everyone on his team is amazing.

Excision surgery with Dr. Seckin

I had excision surgery two weeks ago and I already have less pain than before my surgery, and I am still healing. He is everything you want in a surgeon: the knowledge, the expertise, the confidence, the skills, the precision, the compassion. I do not have enough words to say how thankful I am to him. Dr. Seckin is my hero. I wouldn’t trust anyone but him to operate on me.

He removed a great deal of endo from my ovaries to my uterus, my bladder, and bowels. he removed it. Although I lost a tube, which was actually doing more harm than good, Dr. Seckin managed to give me back my hope of having a family and believing once more in great physicians. How do you ever thank someone like this? Someone who took my pain and restored my dream of having a child? I do this by thanking him and telling women my story. I thank him for helping me, helping the thousands of women he has treated, and for his constant advocacy for women that are suffering in silence.

A note of thank you

Dr. Seckin and The Endometriosis Foundation of America do a remarkable act of informing, educating, and raising awareness for this terrible debilitating disease. Thank you Dr. Seckin I am and will forever be indebted to you. I will never stop spreading awareness for endometriosis. No one should ever suffer in silence. No one should ever be ignored and turned away because a disease is not visible. Every woman should have the option of carrying their own child.

Painful periods are not normal. There is no cure for endometriosis. However, we are stronger than this disease. It will never define who I am, it stole way too much of my life already. And lastly, if you feel something is wrong keep searching for the answer until you get it. Never give up hope because there are wonderful doctors out there like Dr. Seckin.