My journey with endo started in childhood but I didn’t figure that out until I was in my thirties. I woke up one day when I was 8 years old with very swollen ankles. Doctors couldn’t figure out why and I learned to live with it. Then my periods start at age 11 and I was miserable from the start. I would miss school sometimes, be doubled over in the fetal position, etc. I tried the pill, but it didn’t help the pain and it made me moody.
My periods continue to be horrid and finally at age 26, I started using the Nuvaring. It was thrilling! I was finally one of those women who says "I only get my period for two days and I barely notice it". I thought, "this is how other women live all the time? Not fair, but now I'm one of you!"
But then I got a cold four months later. No big deal, I was working as medical assistant, of course I got sick a lot. But then I tried to sleep and could not breathe when I laid down. I knew this was likely a pulmonary embolism (blood clot to the lungs). I went to the ER and, long story short, a nurse saved my life when the ER Doctor wanted to say I had pneumonia and send me home. I recovered well but the saddest part for me was I could no longer take estrogen and enjoy blissfully short, painless periods anymore!
So I keep dealing with the misery for a few more years. I went to Yale in Connecticut for nursing school. I met my husband while there. He and I moved back to California (where I'm from) when I graduated and I started working as a Nurse Practitioner in a women's health setting. I didn't learn about endometriosis in nursing school and none of my mentors in the women's health office said anything about it either.
I didn't learn about it until I went to work at a specialty gynecology practice. One of the diseases they treated was endometriosis and as I learned more about it, I thought; "could I have endo?" I was 33 years old.
Then I started having pain at times other than with my periods. I called it my 'right ovary pain', even though it was too high to be my ovary. Sometimes, I would have to stop walking and crouch down and breathe through the pain.
Insidiously, over the course of the next two years, the pain became a daily beast. I never knew how bad it would be. I could wake up feeling fine and then be in agony 30 minutes later. I spent all my time when I wasn’t at work crunched up on the couch with a heating pad and absolutely no energy. I had very supportive healthcare providers, including my OB/GYN who said she didn't know much about endometriosis, but was willing to help me however she could. I tried everything we could think of and was still miserable, so my husband and I started talking to endometriosis specialists.
We had to change insurance, so I needed a new primary care doctor. I picked her off a website and it could not have been more fortuitous. She was kind enough to share that she was also has endometriosis. She gave me so much hope; she said life is better after surgery and gave me lots of names of surgeons to interview.
I determined that fulguration was not right for me; I wanted excision surgery. I met with several doctors in California; most wanted to do a hysterectomy and take my ovaries out. No, thank you! One told me I was a Nurse Practitioner and should go home and read his book; he would not answer a single question I had!! I was a healthcare provider who knew more about endo than the average clinician but I was not being treated as a patient. You don't get answers to your particular case from a book. I was so frustrated. Women with endo are routinely dismissed and here I was being ignored by one of the doctors who claimed they listen and care.
I left that office so upset, feeling very disrespected. I tried to talk myself into having surgery with him, because 'at least he was a local expert'. Ultimately, I could not bring myself to do so. I started reading more about Dr. Seckin. He is a well-known endo expert and I got the feeling that he truly wanted to help women. I felt comfortable with him immediately during our phone consult and couldn’t wait to meet him in person.
I scheduled my surgery for May, 2016. His staff was very helpful with making arrangements. I had a contact at our insurance company who helped with those preparations, which were arduous. I made my pre-op appointments and my husband, mother and I went to New York.
I remember Dr. Seckin saying during my exam “well, you have the heating pad sign". My endo sisters might know this; your belly starts to show all sorts of veins from prolonged heat pad use. It turned out I needed to see a few specialists because of my medical history. Dr. Seckin was wonderful; he got right on his cell phone and was switching between calls with the two of them to get me appointments for the next day. We were afraid that surgery wouldn't happen, but when I met with Dr. Seckin after the specialists had cleared me, he said, "OK, I'll see you Friday". I breathed a huge sigh of relief and counted the hours until surgery.
When I woke up after surgery, I finally knew what they meant about endo being so bad that you feel better AFTER major surgery than before. My ovaries were temporarily suspended to keep them out of the surgical field. I won't lie; that was very painful but once that was over, I knew Dr. Seckin had found the bad stuff and gotten it out. I felt no endo pain for the first time in years! I had a fibroid and polyp removed from my uterus, sixteen sites of endometriosis taken from my pelvic peritoneum, and my appendix was removed because it was covered in adhesions. That would explain my 'right ovary pain'! It was so fun to see Dr. Seckin walk into my hospital room the next day. I gave him two enthusiastic thumbs up, told him he had done an amazing job and he was smiling broadly! He gave us all hugs and there were lots of happy tears (my Mom and I) in that room.
I'm writing this just six weeks after surgery. The post operative pain has been nothing compared to the pain of endometriosis and adhesions. It will take time to know what my new normal is and there's no guarantee of being 100% pain free. However, I am overjoyed to finally have energy again to do things I love and be more present for my family. I have great hope that it will continue to be a vast improvement over what life was like before surgery and I have Dr. Seckin to thank for that. I already told him he's not allowed to ever retire because there's too many women who need his help.