About a week ago I had laparoscopic surgery to diagnose and confirm Endometriosis. Spoiler alert: that’s not what happened.
I’ve had pelvic pain that has grown more and more severe over the last 12 years. Doctors, those who would listen, have done ultrasounds, MRIs, and all sorts of other tests. They could never find anything that showed itself to be the cause of my pain. I got tired of fighting, and of people telling me that it was all in my head, and took matters into my own hands. Through years of research, support groups, and supplements, I determined that I had Endometriosis. The thing about Endo is that it can only be diagnosed during exploratory surgery as the lesions don’t show up on scans. I fit all the symptoms, checked all the boxes. I set about finding a specialist here in the UK who would perform the surgery, remove the lesions, and best-case-scenario, end my pain. Worst case was getting the diagnosis but not being able to remove all the lesions and still having pain. I was wrong. I think.
So I find the specialist, and am seen by one of his team members. He agrees with my self-diagnosis, and schedules my surgery. I was so excited to finally get the letter in the mail with my date on. Nervousness began to sink in about a week before, but determination and grit won out. When I got to the hospital, I found that the specialist/ team member who was supposed do to my surgery was on holiday for 10 days, so I was going to be seen by someone else, a doctor who seemed very nice, knowledgeable, and who I’d never met before. I was scared, and I knew the importance of seeing a specialist, but she answered all my questions to my satisfaction and my husband and I had already taken the time off work. I also didn’t think I could go through all the lead-up again. It had to be now.
When I woke up in the recovery room, I had a nurse with me. She was lovely. All I remember is asking for water- my throat was so dry. She wheeled me back to the room I was in before. I had another nurse get my phone for me, and I called my husband to let him know I was out and he could come visit me. I was still out of it and feeling a bit sick when the surgeon came back to go over the results of the surgery.
I cannot overstate the significance of that conversation. She told me that she removed an adhesion from the side of one of my ovaries, and I had a small cyst as well that ruptured when they tried to remove it. She found no sign of Endometriosis. She told me about a study that had just been done about Chronic Pelvic Pain (CPP) and it seems that I fall under that category as the small adhesion and cyst would be unlikely to cause the amount of pain I’ve had for the length of time I’ve had it.
I was completely lost. I looked up at my husband once she left and cried. I felt completely deflated. He consoled and encouraged me, like he always does, and I felt like I had to learn to live again.
Here’s the thing. I actually have more questions now than I did before. Endo is easy to miss, so it is possible that I do have it, and my doctor didn’t see it. It’s also possible that I have CPP, pain with no discernible reason.
My next steps are already in motion. I’m going to have the results looked at by my specialist, and request to be referred to an internal MRI by my GP. I’ve got it covered. Mentally and emotionally, it’s not so easy.
The thing about Endo is, although there is no cure and it usually comes back, with a skilled surgeon and a little luck it can be removed and leave you pain-free. This happens in a small amount of cases, sure, but it’s possible. Not only that, but Endometriosis became a word I used to define myself. I am a member of all the support groups, I’ve made YouTube videos about it, I post on Instagram about it. I’ve worn this self-diagnosis as a sort of badge, a facet of my personality, a way to understand myself. A way to point at something inside my body and say “this, this is what’s wrong with me.”
That sureness is gone. It’s evaporated into this vaporous thing called Chronic Pelvic Pain, which is similar to Fibromyalgia in the way that it’s a word for pain that has no discernible cause. If my surgeon is right, if this is what I have, then not only do I have to get used to this new non-diagnosis, it’s also not going anywhere. It means that this is my normal, my life, as good as it gets.
I’m not sitting in misery; I will never stop fighting. I have a handful of supplements that I take every day that have improved my quality of life already. If I don’t have Endo, then I will look for other specialists, other treatments, physical therapy, yoga, whatever. I already have a GP appointment scheduled and am following my new game plan.
This is not about that. What I am trying to say is that in a few moments, what I knew to be true was completely shattered. Although there are certainly physical implications of this surgery (not being able to get up on my own, shower, stand, etc for about a week,) the emotional toll has been much higher. I am confused, and lost, and although I will find my way, I just have to sit here for now.
To everyone who has been by my side on this journey: thank you. I love you.