So it has been way too long since I have last written. Dealing with my endometriosis (including having surgery) has made these past few months very difficult, and at times excruciating. I have spent most of these recent days just trying to keep on my own two feet, and when I had the energy, take care of my little girl.
Endometriosis is a disease where the tissue that lines a woman’s uterus escapes the uterine cavity and attaches outside the uterus. Every month during menstruation this tissue grows throughout the abdominal cavity, attaching to whatever it encounters along the way. The tissue sheds, just like during the “normal” menstruation of a woman without this condition, except the tissue in the abdominal cavity has nowhere to go causing significant problems. Unfortunately, the tissue that attaches outside the uterus causes scar tissue throughout the abdomen. The tissue can also form adhesions, which sometimes causes a woman’s organs to stick to one another and to the pelvic wall.
Five years ago, after many reproductive diagnostic tests, my reproductive endocrinologist diagnosed me with endometriosis. My doctor had suspected endometriosis because I have always had painful periods, which were getting worse over time and I had terrible stomach issues resembling irritable bowel syndrome, which became worse during menstruation. My doctor found adhesions and scar tissue growing on my lower intestines, on the surface of my uterus and on one of my ovaries. My endometriosis wasn’t severe, but even a mild case can cause pain and infertility. After my first surgery I had some amount of relief from the monthly pain and other symptoms. Unfortunately though, surgery for endometriosis only causes temporary relief, because every month the tissue continues to grow outside the uterus, and there is no cure yet for this disease.
Soon after my first surgery, I got pregnant with my daughter. Since my daughter’s birth three years ago, I have had many more fertility procedures and miscarriages (not to mention surgery to remove my gallbladder). Month after month, especially during my miscarriages, I could feel my endometriosis getting worse. This spring, the pain I was having during ovulation and during my periods was intolerable. My endometriosis started inhibiting my daily life. I would have to schedule social events, and even tasks like food shopping, around my period. My husband would have to stay home from work or go in late when my period came because the pain and bleeding were so intense that I felt like I could pass out.
In May, the pain at ovulation was so bad that I thought I was having an ectopic pregnancy. I rushed to my reproductive endocrinologist’s office quite concerned, and after sonograms and tests, he did a physical exam where he could actually feel adhesions behind my uterus. He gave me some medicine to try to stop my period and give me relief. After getting a horrible period and sensing no relief in sight, I decided to go to one of the few experts in endometriosis, Dr. Tamar Seckin. I had heard his name from reading about the “Top Chef” host Padma Lakshmi’s journey with this disease and how this doctor had helped her. Dr. Seckin was one of the few doctors that has dedicated his whole career to understanding and treating endometriosis.
After my first meeting with Dr. Seckin, I knew he would be the one that could help me. He told me that I would have to have another surgery. After a month of tests that included an MRI, ultrasounds and a colonoscopy, I was ready to have my surgery. I was really anxious. During my first surgery, I had felt like I had nothing to lose. I had been desperate to have a baby, and if this operation would help me, I was all for it. Now, blessed with my three year old daughter and being confronted with my second surgery, I couldn’t help but imagine the worst possibilities. What if something happened to me during surgery? How would I recover with my little one at home? How would my daughter be affected by my not being able to take care of her? My husband reminded me that this surgery was for her too. Having a mommy that is not in pain for half the month would ultimately be good for her.
My doctor wanted to do the surgery during my period in order to be able to see the extent of the endometriosis more clearly. The night before surgery I was in intense pain, not able to rely on my usual three Motrin every three hours. My abdomen was so swollen I actually looked like I was three months pregnant. The morning of the surgery I cheerfully kissed my daughter goodbye, told her I loved her and then ran to the car and cried my eyes out. I was so sad to leave her. I got to the hospital and parted with my husband so that I could change into my hospital gown and go through intake. My husband was all too familiar with this scene. During our nine years of marriage, this would be my fifth operation, which doesn’t even include the three IVFs I have had. Every time he sees me in a hospital gown and puffy hair net, he gives me a reassuring smile and looks at me like I am the most beautiful girl in the world.
I met with the doctors involved in the surgery and they reassured me I would be okay. I remember walking into the operating room, lying on the table, bleeding tremendously from my period and feeling overwhelmed thinking about my daughter, the risks of the surgery and the road to recovery. Tears started rolling down my cheeks. Luckily the anesthesiologist came in and took my mind off these overwhelming thoughts with his friendly small talk, until I was in a peaceful slumber. The next thing I knew, I was being encouraged to start waking up from surgery by a gentle nurse. The road to recovery had officially begun.
When I asked my doctor where in my abdomen the endometriosis was prevalent, he replied, “Everywhere.” Adhesions had grown all over both ovaries such that my ovaries had been stuck to my pelvic wall. The scar tissue was all along my rectal area, behind my uterus, on my bladder, on my ureter, adhering it to my pelvic wall, and in other places as well. Dr. Seckin took 16 biopsies altogether. I was very lucky that none of my reproductive organs or my kidneys had to be removed, which is what happens to many women with endometriosis. I was also grateful to Dr. Seckin for performing such a successful surgery.
It has been almost 6 weeks since my surgery and I am still not feeling 100%. The first two weeks after surgery, I needed help taking care of my daughter. Although I was up and walking around and could do a lot of things for her, I didn’t have the energy or the stamina to be there for her for our usual 14 hour day together. By the third week I had her to myself and did okay. Then my period came, and it was excruciating because the inside of my body was still raw and in the process of healing. That was really hard because just when I thought I was better, I felt worse than ever. But that too passed and my energy is back again. After a few months my body will be healed and I should feel better than I have in years.
I am hoping this surgery will provide me with relief from my monthly pain, for at least a few years. I will most likely have to have this surgery again in the future when the symptoms from the endometriosis become unbearable again. I have always been a very strong-willed, independent person. Not being able to do things for myself or for my daughter, having to rely on others and feeling weak and in pain has been emotionally hard for me to take.
I have woken up these past few days doing my happy dance. I am so incredibly grateful not to be in excruciating pain. I am happy to be writing again and feel empowered to talk about endometriosis in this blog. Endometriosis is a disease that affects millions of women, yet no one talks a lot about it, many doctors don’t even know about it, and there is not a lot being done to find a cure. When I first asked my gynecologist about my painful periods, her response was that it was normal and nothing to worry about. I am here to tell you it is not normal, you are not crazy, and there is help and support out there for you.