Now that I have a much better understanding on what endometriosis is, I know that I've had it since before I was a teenager. I started my period young, about 12. I didn't even grasp what was going on. My periods then were quite heavy, so much that i relied on pads. I didn't even touch tampons til my senior year. I had all the signs and symptoms but I don't think my pediatrician understood what endo was at the time so she said it was a bad period and take midol. I would rock back and forth, pace, and try not to throw up. My senior year I barely even attended school because it was too much pain.
I held on for a few years then by 21 I saw my first real obgyn that seemed like she knew what was going on. We tried a few birth control pills and that didn't help. She suggested surgery for suspected endometriosis. I went for my first surgery and of course was nervous. It ended up being ablation. She found endometriosis and I thought that's it i'm fixed. 6 months later the pain returned and was given the option-more like pushed- into Lupron. I read too many horror stories and at 22 I was no way forcing myself to go through a medically enduced menopause. So I found a doctor at Brigham and Woman's hospital, again went through the same thing and another surgery. This time during post op she gave me an actual stage of endometriosis. Again I thought she knew what she was doing. Ablation was used again. That's when I really started doing my research.
The pain at this point was worse, and at the time of my last surgery I was in a long term relationship and sex? well yeah lets just say it was the most painful thing ever! So was the relationship ! (lol)
At this point I was desperate for answers and sick of surgeries that left me helpless. That's when through a few message boards I found an excision specialist. I was used to driving around for answers and I showed up to my appointment, not knowing what will happen. As soon as I sat down he asked me what my definition was of endometriosis. I was completely wrong! Then we went into why ablation never worked and he actually brought out a medical encyclopedia to show me what was going on. He then scheduled me for excision surgery.
I walked into the hospital and at this point I was so ready for this to be done. When I woke up in recovery I was in more pain than usual (expected). After a sleepless night I was walking around the next day, which was unusual from previous surgeries. I felt pretty amazing. At my post op he discussed how severe my endo was and that even though he got every last stinkin bit there is a chance I could have adenomyosis which is endometriosis in the uterus.
Let's fast forward to recently. I found out the other day that I do have adenomyosis. Was it frustrating to hear? Yes and No. I was glad all the endo was excised during surgery and now i'm glad to know that I am not nuts that the pain that is still existing is in my uterus. I did say to him I can't believe I have an angry uterus.
I am hoping Dr. Sinervo will be able to do my presacral neurectomy so I can save my uterus but at this point, with all the pain I went through the other day, just from him putting in my IUD, something so simple, it disturbed my uterus to the point where I was having trouble walking today. Pain has been shooting down my legs and my back is on fire. I have come to the conclusion that the uterus has to go. I will always have endometriosis but my pain will be lessened by 90%.
What I am dealing with emotionally is the fact that I won't have my own children. Yes adopting is an option but right now I have to grieve in my own ways. To even type this I am holding back the tears. I can't even tell you how much I've wanted children, how it pains me that I am still single and have no significant other to be there for me. I will say i'm lucky to have an amazing family. I also have my beautiful niece that will be so spoiled more now than ever. I just haven't come to terms with why me? Why am I being punished for something that i've wanted so much. It's going to change my life even though the scars will remain. I guess you can say it's going to take a long time to get to where I want to be emotionally.
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