Hysterectomy for Endometriosis?

I am 4 weeks post-op, healing relatively quickly and extremely thankful that there are such amazing, compassionate doctors in the world. I have diagnosed 16 years ago with endometriosis.  I was 24-years-old and had pain on my left side, after months on the birth control pill, a laparoscopy confirmed that I had endo. My cyst was aspirated and I stayed on the pill until I was married and ready to have children… Fast forward 14 years and 2 beautiful, perfect kids later.  I had no fertility issues and so was convinced that I had beat the odds, after all, endo is a fertility disease and I had no problems getting pregnant so I thought my issues with Endometriosis must be over.  I have always had pain and so it was part of my daily life, but the thing that caused me to go see my gynecologist was the fact that the pain was now in my lower back as opposed to it being in my ovaries or in my pelvis or down my legs.

My GYN said my cyst on my left ovary was back again! I could wait and deal with the pain or opt for another laparoscopy… I, of course, opted to wait until the pain was unbearable.  In November of 2010, I went in for my second laparoscopy. A simple surgery that should have taken 45 minutes lasted over 3 hours. I woke up without my left ovary and was told I had a small spot in my bowels that needed to be monitored. I was put on Lupron and the birth control pill 2 months post-op to minimize the spread of the disease in my bowels.

Lupron made it hard for me to function, I was having complex migraines and stroke-like symptoms. My GYN disagreed that it was the Lupron and the birth control pill causing my symptoms but as per the advice of the 3rd neurologist I had seen, I stopped all my medication.  My symptoms started to subside and my life was normal again.

There was never a plan B.  How would we keep the Endometriosis from spreading now if I could not be on the medication? Well, we could opt for a hysterectomy.  My GYN believed that my symptoms were not related to the medication but to my mock menopause which was induced by the medication. So I ran the risk of those symptoms coming back if I had a hysterectomy and then there would be no way to address the symptoms. I would absolutely not go through that again and so a hysterectomy was not an option. I would take my chances. What was the worst thing that could happen? I was never properly informed, I was completely uneducated and uninformed about endometriosis. I had no idea what it could do to me if left untreated for such a long period of time, had no idea it could be spreading throughout my pelvis and would ultimately change my life so drastically. I always thought it was a fertility disease and I was one of the lucky ones, I had beaten the odds and had 2 beautiful children without any issues.

In January of 2011, the pain was back, and back to my GYN I go. He sent me for a sonogram and did a biopsy of my uterus. I did not understand why he was doing a biopsy, I thought he was being pro-active. The biopsy was normal. My husband kept pressuring me to look for another doctor, a specialist. My husband was out of work for the first time in his life and we were struggling, I would put my health on hold, we had other things to worry about.

I remembered a friend telling me about a foundation she had heard about, The Endometriosis Foundation of America, so I started researching the foundation and its founder, Dr. Tamer Seckin. I registered for their lectures in March but was unable to attend because I was working part-time to try to help out at home.  In late May of 2012, I made and appointment to meet Dr. Seckin. Within 5 minutes of my first examination with Dr. Seckin he told me I had adenomyosis of the uterus and a nodule in my rectum. I saw my GYN about every 6 months and he had never mentioned any of this. And so my journey began. Dr. Seckin introduced me to Dr. Heymann and together they sent me for a series of tests, I went for MRIs, CAT scans, blood work and a Colonoscopy.  With each test, I felt like my world came crashing down a little bit more.  I had adenomyosis of the uterus, there was a nodule in my rectum, my appendix was enflamed, I had endo in my bowels as well as my colon. That was what they had confirmed with testing. There was also the endo that potentially spread to my pelvis which would not be confirmed until surgery.

Dr. Seckin and Dr. Heymann sat with me and my husband to discuss what this all meant, their plan of action and what would need to be done in surgery.  I was told it would be hours, and hours, and hours of surgery and I was faced with possible resectioning’s of my bowels, colon and rectum. The hardest part for me was the fact that I was faced with such a major surgery for a disease that I was told was a fertility disease for the last 16 years of my life. How could this possibly be happening to me?  I was one of the lucky ones, I had no fertility issues, this was a big mistake. I was angry that I was dealing with this, that I was so uneducated, that I had no idea that any of this was happening in my body and that no one told me this could possibly happen to me… I felt ridiculous telling people that I was having such a major surgery for endometriosis, most people have the same perception that I did, endometriosis is not a big deal, it is a fertility disease and that’s all that it is.
One week before my surgery, as a courtesy to my GYN and just in case I actually had any thought of going back to him for treatment after my surgery, I called to inform him of my diagnosis and upcoming surgery. I was horrified when his response to me was “If you think that is what you need to do to make you feel better, then I’m glad you’re getting help.” This was a man that I had trusted with my health for 16 years of my life, he was completely unaffected by my diagnosis and made me feel like I was having this surgery just to make myself feel better, mentally, not physically.  I was crushed.  How many other women are in his care, and trust him just like I did, that run the risk of a bowel obstruction or something worse and don’t even know about it. I was angry that he never told me that endometriosis specialists exist and that maybe I should go see one because I had such an aggressive form of endometriosis.

As I said in the beginning, I am now 4 weeks post op, I had a 6 ½ hour surgery to address the issues that were created by my endometriosis.  I had a complete hysterectomy, deep tissue excision surgery throughout my pelvis, a bowel resection, a colon resection, an appendectomy, and repair of a 40% hole in my rectum for an endometrium that was removed.  They also found and removed endo in the ligaments of my left leg.

I remember going into the OR, I was crying and scared, I was walked in by a resident who I will forever be grateful to.  She reassured me it would all be ok as we walked in, held my hand as I was given anesthesia and came to see me every day, twice a day for my entire hospital stay. My hospital stay was 1-week long, during my stay, my doctors would come see me every day. I feel truly blessed and lucky to have met these amazing men. 

They say that most people go through some life changing event between the ages of 35- and 45-years-old. I had my surgery on September 14th, 2012, 2 weeks before my 40th birthday.  This surgery and my recovery for a disease about which there is not enough awareness is definitely my life-changing event. I would love to help raise awareness so that young women will be better informed and know that there are doctors that can help them. I would like women to know that their gynecologists are either not well informed or not willing to steer them in the right direction in fear of losing them as patients. I would like to change the perception of what endometriosis is. It is not just a fertility disease, it is a disease that can and will change your whole life, if left untreated. I consider myself one of the lucky ones, I found Dr. Seckin and now feel that my quality of life will be significantly better. I will be forever grateful to him for all he has done for me and my family.

Angela G