I have been contemplating telling my story so that I can save at least one person from the torture I have endured the past 6 years. The following blog will not be fore everyone. If you aren’t interested in hearing about things like c-sections and endmetriomas, please move on. This blog post is not for you. 🙂 No hard feelings. I also want to say that I am not a doctor or even a nurse. I am not claiming to be an expert on anything.
In November of 2007, I gave birth to some awesome twins. After trying to have them naturally, we ending up having a c-section. It was relatively uneventful. I recovered relatively quickly and I went home to take care of my new babies.
I am not sure how much later things started to get painful. It was terribly difficult and stressful to take care of two babies, so time seems to blur together for those first two years. When I started feeling the pain, I thought it was just the endometriosis that was removed just prior to becoming pregnant with my twins coming back. I had never had pain with my endometriosis prior to having my twins, but I knew I had the condition.
I complained to my OBGYN. She agreed that it was probably the endo and put me on the pill. I was on it for 2 years and it did help. The terrible pain in the lower right of my abdomen got better. It took about six months, but it did. It did NOT go away, but it was tolerable.
After a while of tolerating the pill, my OBGYN and I decided that the pill was not a good idea for me. With a strong history of autoimmune disease and me approaching 35, we decided it wasn’t safe. After coming off the pill, that pain started creeping back. I talked to my doctor again and she said that when I couldn’t stand it anymore to let her know and we would schedule my hysterectomy.
I waited for months and months, but it every month it got a little worse. It wasn’t “painful periods”. It was a searing pain in my lower abdomen that was ALWAYS there. Some days were worse. On bad days (which could last a week or two), I couldn’t roll over in bed. I couldn’t go from sitting to standing up straight without that searing, pulling pain. I couldn’t bend over. I couldn’t touch my stomach. It felt like someone left a scalpel in my belly and when I moved it jabbed me.
Recently, I finally called my OBGYN and started the process of preparing for my hysterectomy. At the ultrasound, the ultrasound tech said, “Dr. ____, thinks you have adenomyosis”. It was the first I had heard of this condition and I was hopeful that the hysterectomy would cure my problem since the pain was probably originating from my uterus.
Then, I had my pre-op appointment with my OBGYN. As we were finishing up she asked if I had any concerns. I told her that my only concern was that it wouldn’t work. She then asked again where the pain was. I showed her. She poked and prodded and then, wide-eyed, she said “You don’t need me you need a general surgeon.” I was confused and upset. She ordered a CT scan and cancelled my surgery with little explanation other than my problem wasn’t something she could fix.
When the CT scan results were in, it was a shock. They found a 2cm endometrioma on my abdominal wall. It was attached to my abdominal muscles. An endometrioma is a cyst that is made up of cells that are usually found in the lining of your uterus that is growing somewhere other than your uterus. Mine was growing outside of my abdominal wall.
No one ever found this little mass that we bleeding into my abdominal wall and muscles for 6 years because they were looking internally instead of superficially. It sure felt internal to me. No one saw it on the half dozen ultrasounds or the CT scan I had 3 years prior. No one ever felt it. After endlessly searching the internet for possible causes of lower abdominal pain, not once did I come across the words “abdominal wall endometrioma”. I never suspected it was related to my c-section because the endometrioma was not in the same place as my c-section scar, but slightly above it.
Now, you are probably wondering, “how did it get there?” Anyone who has had a c-section or other uterine surgery in the past 10 years can develop an abdominal wall endometrioma. They aren’t common, but when they cut into your uterus there is a possibility of transferring cells to places they don’t belong. This includes OUTSIDE of your abdominal cavity. These grow and cycle, just like your uterus. Problem is that there is no where for them to go when the cells shed. This causes inflammation and scarring and PAIN.
I am now scheduled to have this bad boy removed. I was told that surgery will take about an hour. They will remove the endometrioma and some surrounding material to reduce the risk that it grows back. They may have to put in a mesh, depending on how much of a defect he has to make in the abdominal wall. Just in case, they will also send the cyst out for testing to make sure it really is benign.
I was also told by my OBGYN that if I had the hysterectomy, it would not have worked. Not only would it not have worked, but THEY NEVER WOULD HAVE FOUND THE ENDOMETRIOMA. I would have still been in pain and I would no longer have my uterus for no reason. It was a close call. I feel very lucky.
I don’t want anyone else to suffer with this condition for 6 years, or longer. I hope that someone else googles “lower right belly pain”, they find this blog and can see if it fits their story.
Thanks for listening.
I am now 12 hours after returning home from surgery. My incision site doesn’t bother me much. It was glued shut. My entire abdominal region is sore though. It feels like I did way too many sit ups, but it is tolerable on my pain meds. I took a short walk before bed and slept for a while. Now, I can’t sleep.
They made a 5 inch incision and removed an endometrioma that, according to my husband, was about the size of a half dollar. And they took a “clean perimeter” of healthy tissue to reduce the chance that it comes back. They had to take a section of abdominal muscle, but they were able to make surgical repairs without the use of mesh.