There is a lot to be said about women who endure the pain of endometriosis. Here’s what I have to say: it’s not right.
The ignorance in the medical field surrounding women in pain is astounding, so much so that I have personally yelled at two gynecologists in my life. One of them had the audacity to bill me after for a five-minute appointment that had no resolution. From the moment that doctor walked through the door, he didn’t look me in the eye once. The office conveniently billed the wrong insurance and refused to fix it. I did however receive a letter from him about one month later saying he was going into retirement, and all I had to say was good riddance.
Disrespect from a doctor who treats you and your pain as nothing is the most devastating feeling when you have been in pain for more than 14 years. From the age of 11, I was suffering from heavy, painful periods. It then got worse and worse, leading to painful intercourse, extreme abdominal pain, nearly constant diarrhea, weakness, loss of appetite, and the icing on the cake — passing 3-4 quarter sized clots a day during my two week long periods. Does that sound normal to you? In what world is that normal? I guess in this doctor’s head it was, as he shrugged me off in a matter of seconds.
After that meeting, I cancelled whatever follow-ups I had in that office and immediately called my mother’s gynecologist. Why I didn’t do this in the first place, I still don’t know. This man understands my family history and pain. His wife was my gynecologist growing up when I had first gotten my period and had complete records on me. They used to run a nice practice together until she retired. It was my mistake not going back.
What was my breaking point though? It was a leaking endometrial cyst. It leaked for two months. When they leak, they leak blood directly into your abdominal cavity causing inflammation of the surrounding organs leading to more pain. The pain is indescribable, for those of you familiar, you know. The pain goes from staying in your usual cramping areas to all throughout your abdomen, like fire. My stomach was hot to the touch and distended, alarming to say the least.
When I took all of my scans to my new/old gynecologist I was literally in tears and shaking on the table as he looked over the scans and reports. He asked me what I would like to do, and I told him I wanted the surgery to remove my endometrial implants and I want the cysts taken care of too. I yelled it at him (It was more of a whimper, looking back it wasn’t too loud). He knew what was going on so he just took a moment and then said “Of course, how would you like to talk about your options for after the surgery?” He went on to explain that I may need this surgery just once, or even once a year depending on the pain and if the implants grow back. He then explained how birth control can also slow this process giving me longer times between the surgeries if I needed them at all again. The talking, the explaining helped my current mental state of disarray and showed general respect for me. Knowing his wife, she probably helped make him this way. Compassionate. He also knew of my surprise diagnosis of epilepsy about 6 month prior and how badly I was already feeling. He acknowledged my pain, my struggle and gave me a solution.
Not even one day later, his office contacted me to set up that surgery and within two weeks I was going under. It was over, I got what I wanted. For years, I had doctors throw every type of birth control at me, and one very unsuccessful time with the Mirena IUD. I had breakthrough bleeding and pain like no other; the IUD had completely failed in controlling my endometriosis and periods so I wound up having it removed. Failure and pain for years was about to come to an end. I don’t think I had ever been more excited for anything in my life. Both of my parents were with me that day, also just as excited for me. It was the last step in getting my life back together after years of turmoil and pain with endometriosis and undiagnosed epilepsy. We’d been through a lot.
After I woke up from my surgery my parents were there by my side. And after recovering a bit from the anesthesia I was able to grasp what they were saying to me. They told me he had gotten all of the implants and removed the cyst, and even found another one hiding behind my left ovary. The doctor immediately after surgery talked to my parents, and showed them pictures of what it looked like.
Those black spots were surrounding my uterus, on my ovaries and on my abdominal wall. Whenever I had my period, so did those, causing what seemed like 1000 times the pain of a normal period. He explained how much pain just one of these can cause, let alone having them all over. Along with the cysts, it was a mess up in there. He fixed it, he got them all and even checked my Fallopian tubes, and did checked throughout my abdomen just to make sure. This was a real doctor, one who cared and knew pain.
When I woke up, all I felt was soreness, no cramping. It was gone! I was just cut into, pumped with gas and prodded around in and it was nothing compared to 14 years of pain. All that was left were two little scars, one in my belly button and one directly above my pelvic bone. Later that day I was up and about — well, shuffling about — the house like I was someone who had been in prison for years. It was my last obstacle, conquered.
The IUD I have now (placed in July 2016) is fantastic and doing a wonderful job. Every month my periods are lighter and a little bit shorter. The pain is nothing compared to what it was. I don’t foresee the endometriosis having a resurgence while this is in, and I plan on getting another one placed in three years when this one’s time is up.
I had to fight doctors to get this surgery done, something so simple and quick (less than 45 minutes!). In the end, it takes finding the right doctor, as they are out there. Don’t let anyone tell you that pain is normal; never stand for it! If they shrug you off, you get rid of them (also a bad Yelp review might also help with your anger). Keep fighting. Endometriosis isn’t normal — it’s a disease.