Awareness efforts for Endometriosis are long overdue....
I for one have been fighting a lifelong battle with endo. As I sit here telling my story, I have the nagging low grade pain and reminder that it is only a matter of days until I will again have my Depot Lupron shot and keep the norco at hand. I realize that this drug is rather controversial and not an option for many people, but I am one of those rare few who have been able to take it and it has literally made the difference between being able to live a semi-normal life, or not.
My battle with endometriosis began in my early teens (1975) when the pain would get so bad and would be accompanied by symptoms of IBS, debilitating blackout migraines, TMJ and all over swelling and pain to the touch (I have also been diagnosed with Fibromyalgia within the past few months) ... my entire system would literally go haywire.. I would have such horrible pain in my neck, shoulders, pelvis, lower right back and hip that would shoot down my right leg to my ankle making painful to walk at times, limiting my range of motion and causing difficult standing up straight. I even remember one time in my early twenties I had “monthly” pain and swelling in my right ankle to the point they casted it thinking I was suffering from gout.
I would miss on the average one day of high school a month from the pain and symptoms. Doctors were cold and callous when I was a teenager and would tell me I have heavy periods or a low pain threshold, quit whining, take a Midol and deal with it so I suffered in silence for many years, not knowing what it was or why my periods were so heavy and so much more painful and involved than my classmates. This has extended throughout my professional career as well… how do you explain to your boss when you don’t even know why yourself? When you don't have a diagnosis there is nothing you can tell them as to why you are missing work, your doctor won't give you a note so you have to hope you don't lose your job due to unexplained absences due to an invisible, possible "made up" malady.
The pain continued to escalate and over time the pain was only tolerable for about one week out of any given month… the migraines increased as did the level of pain. I was never treated for any of my symptoms or pain. I began to think that this was going to be my life and I needed to try to overcome it and just get used to it if I was going to be able to have any kind of life at all.
After a couple of miscarriages, when I was 27 I became pregnant with my one and only child… that pregnancy brought such relief from the pain of endo I wished I could have stayed pregnant forever. I had never remembered feeling so free of pain. It was strange, the entire time I was pregnant I never feared the pain of childbirth, in my opinion it had to be less than my continued pain with endo... and yeah, childbirth was a breeze!
I felt great for a few months after delivering my son, and then the pain gradually returned with a vengeance - the pain was even more severe than before, was continuing to increase every month and I had to deal with it. Not knowing that the chances of me having another child were slim to none, I decided at age 33 to get my tubes tied. It was while undergoing the laparoscopic procedure that I was diagnosed with Endometrisis.
The surgeon came in after my surgery, he was very grim and proceeded to show me a photograph he had taken of my insides with the camera showing numerous circles on it - he told me I had Endometriosis and that those circled areas were areas he was safely able to safetly cauterize the growths. HUH? What the heck was that? He told me I needed to follow up with my regular doctor.
He shook his head and told me that the disease had so invaded the surrounding organs and that it had been allowed to continue for so many years that it was too involved and that there was nothing further that could be done, he said he was sorry, patted me on the head and that was the end of it.
Being fresh out of surgery and still under the effects of anesthesia I was foggy and confused, was unable to adequately able to comprehend or process what I was being told and I had no idea what the diagnosis meant or where to go from there. That procedure brought the pain to a semi-tolerable level for a couple of years, although it did nothing for the IBS, and pain and tenderness to the touch through my entire body.
Gradually, the pain returned and continued to increase, but I sucked it up and life went back to how it was until about 10 years ago, I was 35 and the pain had become so intolerable I would end up in the emergency room where I would be given narcotics and sent home, there is nothing wrong with you, deal with it. Those monthly E.R. visits would continue for another two years and continued to escalate. I had Kaiser, and the nearest hospital was 45 minutes away.
My last visit to the E.R. was the most horrific ever. I was now 37 and the pain was worse than ever and I was bleeding so bad, I thought I was going to bleed to death... and I didn't just bleed, I literally "delivered" clots, some at times nearly the size of my fist. I drove myself to the Urgent Care, standing in line to be waiting on crying uncontrollably from the pain.
I was placed in a separate room and given a pelvic exam, once again and the doctor announced there was nothing wrong with me, the pain was in my head and that I was just trying to get a script for pain medication. I was horrified and crying the entire time and telling him it was real, and literally begging him to help me get some relief. Are you kidding me? I had NEVER been given a prescription of any kind for pain, only shots of demoral in the E.R. amidst accusations that I was faking it to get drugs.
He said wait a moment, and he and the nurse left the room they were gone for over an hour … I was laying on the bed in full repose, feet in stirrups the entire time. I was crying out from the pain and calling for someone, anyone to help but nobody answered me, nobody came.
I finally got up, bleeding all over the floor, still crying and stuck my head out in the hallway begging the first person I saw to please, please help me.. finally the ER doctor came back in and said he couldn’t help me and that he had made me an appt. with a gynecologist upstairs and refused to give me anything for the pain. I got dressed and went upstairs to the appt., crying all the way.
I walked in, a young PA asked me a few questions, looked at my file from the ER (which was the same hospital and file from my surgery a few years earlier) and immediately gave me a "cocktail" shot that within minutes eased the pain and what felt worse than delivery contractions. He then told me it was the endometriosis that was causing this horrible pain, and he would do his best to help me. I began crying again, because this was the first time in over 22 years that anyone had believed me, let alone knew what was causing my pain and that their might be some relief.
That very day that I was put on Depot Lupron. I have been on Depot Lupron once a month for 12 years. I understand the guidelines are for six months, but one week before my shot it starts all over again.. so with the shots the pain is as close to tolerable as it can be for nearly three weeks out of every month instead of the opposite. I have had my bone density tests and am good so I have been able to continue. When I tried a 1mg add back within two days the pain was back full force and I had to stop taking them.
I am nearing 50 and this time last year decided to see what happened if I stopped taking the shots... HUGE mistake. I ended up in bed on norco (vicodinex2) for a week curled in a ball crying and being reminded of why I started taking it in the first place. It is a year later and I am finally at a tolerable level 3 weeks a month, but having recently been diagnosed with Fibromyalgia as well am on daily medication for pain, but even though the Endometriosis has severly impacted my bowel , right hip and other internal organs.
I have not been scoped again to see the extent of the damage, but I know what is affected, I can feel it. I have learned more about this disease in the past year than I have ever known and that has helped me understand and deal with and overcome the stigma surrounding it.
It is difficult to deal with pain to begin with, it takes a horrible toll on your mind body and spirit… but to have that pain caused by a disease that is so unknown and misunderstood and surrounded by the personal nature of a woman’s period only adds to the toll. I just found out eight months ago that my mother and all other women in my immediate family for at least four generations have been afflicted, all at different levels. Had this information been known and available diagnosis might have come much sooner. I am glad I did not have a daughter, only a son.
I would like to thank you for your efforts in raising awareness of this horrible disease... I know that education in dealing with this dreadful disease is paramount.. The huge impact on one's quality of life both physical and emotional is highly underrated and getting the word out is so important.
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