It still feels surreal. I got the call on Monday morning. I was so excited I did a little happy dance before getting ready for that mornings appointment with my endo specialist. I felt lighter in my body and in my mind; lighter in a way that I had not felt for a very very long time. The pain was still there, and still is, but now there is an end in sight. My appointment went well- we reviewed the plan for my surgery and discussed my current range of symptoms....skip ahead if you don't want to read about the details. At the moment, I have a variety of symptoms that are a constant: pain ( in my lower back and legs from nerve compression, a deep ache and heaviness in my pelvis, pain throughout my body from fibromyalgia- joint pain, muscle pain, headaches-, pain in my bones from medication side effects, exhaustion that doesn't go away no matter how much I sleep, insomnia, oh and my ever persistent nausea. There was also the memory loss and brain fog. The symptoms that were not as constant could come and go at any time, some were predictable, like the intense and sudden pain that comes when I have a bowel movement, others less so. These included: bouts of nausea and vomiting that lasts a couple of days, the passing out that happens following days of vomiting or brought on from a particularly bad pain day, vaginal bleeding ( yep, thats right, even though I've spent the last 10 months in menopause my body has continued to have periods of bleeding), rectal bleeding ( this was a relatively new one, and caused by a tear in my bowel), finger/hand/arm/leg twitches and spasms, the sharp pains that came and went intermittently due to endometriosis lesions and adhesions.
The appointment was quick and easy, my doctor and I exchanged a hug and she told me its going to get better. The clinic nurse who I have become well acquainted to stopped by to say hello and give me a hug as well. I really can't ask for a better team of people to have on my side. There have been challenges for sure, but I really trust my dr, and I trust that she knows, understands and cares about what is important to me. This surgery will be new and different for me; there will be excision of endometriosis lesions same as before, but I will also be having my right ovary and fallopian tube removed, and the nerve that sends pain signals from my uterus to my brain will be severed. We suspect endo to be found on my bladder and bowel, on my appendix, on my right ovary ( my dr suspects it may be attached to my bowel) and around my uterus and rectum.
It was the anniversary of my diagnosis this week. 5 years and a few days ago I woke up in post op recovery and was told by my OBGYN ( not my current endo specialist) that she had found endometriosis. She told me she removed it ( ablation) and that I was going to be fine. That was it. I didn't hear another word about endometriosis from any dr until my 4 week followup. In that time I had done plenty of my own research- thank you to nursing for incredible access to databases! I had a list of questions and she couldn't answer most of them. I am so grateful to now be under the care of specialists who really know endometriosis.
It's hard to think about the fact that despite having been diagnosed 5 years ago, my quality of life has only worsened and I've required more surgeries and extreme treatments ( menopause at 27 hasn't been easy). I really truly believe that this is due to how long it took for me to get diagnosed ( 10 years) and the fact that it is an under researched and under funded disease. Despite my OBGYN not knowing much about the disease, I am forever grateful to her for finding it. I am grateful to her for listening to me when I told her something is really wrong, for continuing to search for an answer until we got one. I don't even want to begin to imagine what my life would be like now if I still didn't know.
If someone you know has symptoms of endometriosis- please listen to them. Do not disregard the pain and other symptoms because it might be uncomfortable to talk about. 1 in 10 women has endometriosis. If you know 10 women, you know endo.
Thank you for reading friends,
xo Emilie
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