Endometriosis is an unforgivable disease. It affects more than 176 million women in this world, and brings so much pain and anguish it’s difficult to put into words if you haven’t experienced it first hand. It was 30 years ago that I was diagnosed with “Endo”. My legs were going numb from pain during and after sex. This was not helping the already dysfunctional relationship I was in. My periods from childhood were so painful that I would be sent home from school looking white as a ghost and I would just curl up trying to make it go away.
About a week ago I was working on “my story” (my book) and part of that story was a 5 year battle with Endo. I was 19 years old when I rode my bike (it was my only transportation) to my gynecologist because of the pain I had been having. He told me he thought I had this disease, that I could not pronounce. He also felt what he thought to be a cyst on one of my ovaries. He set up an appointment to go in with a camera and confirm what he thought.
I remember riding home in tears. I was scared and had no idea what it all meant. I was estranged from my mother and the whole lousy lot of family except for one cousin and her husband. I had just moved from my studio apartment to live with my boyfriend, who by the way wasn’t any help in any of this. He wanted sex mere hours after I got home from surgery…I mean really, what an asshole.
You have to remember this was 30 years ago and there was no internet to turn to. It was the books you found in the library where you got your information. Well one book anyway. In searching to give you the name and author of that book for this post, I can’t locate it anywhere. It must be out of print. However there are many books to help inform you now. Wow, what a difference 30 years makes.
Well the first doctor was right, but my insurance wanted a second opinion and so I went to a second doctor who told me to go home and have a baby and that would cure me. Stupid fuck. I was angry and scared and didn’t understand why this was happening to me. So I screamed at this idiot doctor to “Take a step out of the dark ages asshole! Women are meant to be more than breeding machines”. Remember I was 19 and really angry.
My original doctor then performed a laparoscopic procedure and that was followed up by surgery every year to go in and burn off what grew back. I stayed with this male doctor for 2 years worth of surgeries. That’s right, every year I had to go back in because the disease wouldn’t stop returning. They couldn’t tell me why it was coming back and they couldn’t tell me there was a cure for it. They just kept prescribing pain pills. Yep, just what every young woman like me needed. Mask it. Cover it up because they didn’t know what else to do.
I started getting fed up with not having answers. I was losing more of my youth yet again and couldn’t tolerate any longer. I had to have information and I wasn’t willing to accept more pain pills and surgery as the answer. A roommate of mine found only one decent book in the library about Endo and so I ended up going to the book store and ordering a copy for myself. I knew I would be using it as a guide. I went to a support group meeting a few times but the women were more concerned about not being able to have babies than actually getting rid of the pain. I knew I didn’t want children, but even more I knew I didn’t want the pain in my life.
So in my 3rd year I found the name of a woman doctor who had a reputation for knowing about this disease. In the beginning she did the same thing cut me open burn it off and repeat the following year. So I set a consultation with her in my 5th year, because I had made an internal decision and I had a long list of questions that I needed to corroborate what I knew would be best for me. She explained to me that how Endometriosis works is, when the lining of your uterus that should flush away each month during your period, it does not always eliminate from your body.
There are parts of the lining that grow and attach itself to other organs in your body cavity outside the uterus. So basically you have a period inside your body cavity and the tissue grows and spreads web-like attaching itself to your bladder, bowels or whatever it finds, then restricts normal bodily function. There are cases where women have Endo in mass and have no pain. Then there are other cases where you have a little bit of Endo and because of where it is located, it is so painful you can’t even walk.
So after the last consult with the more informed doctor (I was now 24) I begged her for a complete hysterectomy. In my thinking, if my body no longer has a uterus or ovaries then I can’t possibly produce more tissue to grow and spread. It was a long conversation, but I had educated myself on the disease and I knew I had to take control of my life. I had the surgery and it was the best decision I ever made. This was of course followed up by many years of hormone replacement therapy, but I was ok with that.
Now 30 years later I see there is still no progress in fighting this disease. I just wonder if men went through this sort of pain and agony, how far along would we be in the discovery process. I’ve been reading forums for women who have Endo and my heart aches for them. I answer and comment on their posts to offer advice from my experience. That is all I can do. Imagine 176 million women have this disease. There is something so wrong about this.
Its insane the verbal abuses that I am reading about on these forums. These are abuses that come from many of the doctors towards their patient’s. To tell a teenager to go home and have a baby and that will fix things is beyond absurd. Yes they are still telling women this very thing. Who does this? Frustrated doctors that are too egotistical to say they just don’t have they answers.
This is the point where you have to get real with yourselves ladies. If children is what you want then stick it out. That is if you don’t want to use alternative methods to have children (adoption, fostering or a surrogate). Or have the hysterectomy. Now listen, I’m not saying that’s your only answer and that it is the right one for you, but you have to do what is right in your heart. However, staying drugged for years so that you can function enough til your ready to try to have children, may not be right for you either. Remember that Endo is one of the leading causes of infertility in women today.
It’s not an easy decision, but its one that has to be made. Talk to as many women as you can and don’t listen to only one doctor. Educate yourself and fight the battle with as much knowledge as you can. I will attach a few links to this posting and know that my heart goes out to all 176 million of you.