Chronic EBV · Chronic Illnesses · Endometriosis · Fibromylagia · Hypothyroidism · May-Thurner Syndrome

Hearing the Words – “We’ve got to talk about this” – “it might be cancer”

This is going to be a health post, so if you’d rather not know, then skip on by.

I’ve been without a primary care since August, and as I started having an increase in symptoms after I got sick the end of November/beginning of December, I decided it was time to buckle down and really decide what I was going to do about my health. We were able to figure out a way to go see my original primary care, and it was 100% the right decision. Because I hadn’t had labs done since August, and I’ve had what has seemed to be thyroid issues which included difficult swallowing, we ran AAALLLL the labs, including trying to verify if I have Chronic EBV.

After a negative infection panel for H. Pylori, and a negative thyroid ultrasound, as in nothing showed up that explained my throat feeling like I have a constant lump in it, all that was left was to wait for the rest of the labs to get in. I got a call this morning from my very concerned doctor explaining to me that she needed me to get a ton more labs and she was putting in an ASAP order for a CT scan. Basically, my estrogen levels came back at a “this is usually only seen when the patient has cancer” high.

Today is my youngest’s 2nd birthday. This morning I woke up with memories of when he came screaming in to this world, 6 weeks early, in the wee hours of the morning 2 years ago. I was already a bit wibbly-wobbly just feeling those emotions and rerunning through my mind how I felt during the 4 hours it took from my water breaking to when they pulled him from me and not even remembering the glimpse we got of him. Then to get the news that I may have cancer, my entire day just collapsed. My oldest has had a fever the past two days, I have been feeling like shit, and even still, I packed up the boys into the car and rushed over to my doctor’s office to get the rest of those labs drawn so we can figure out what’s going on.

So here’s the details.

During a healthy woman’s cycle, starting on day 1, her estrogen and progesterone levels are supposed to be at their lowest. The hormone FH takes over to start prepping follicles to release an egg around day 16ish (depending on the length of the cycle). We decided to have my labs taken around the very beginning of my cycle to see where my hormone levels are at the very bottom. So when I got my labs back, I can certainly understand why my doctor was so worried. A normal healthy high estrogen level should only be around 200, usually less, and that’s roughly a handful of days before ovulation. At the beginning of a cycle, it should be at it’s lowest, anywhere from 15 and above.

My estrogen level, at the beginning of my cycle, was 778.

This is not normal.

This is a scary dangerously high number.

My body is very sick and because of having so much estrogen wrecking havoc on my body, I am barely functioning right now. This is the reason why she sent me in for a “Stat” CT scan. We had to rule out the worst outcome before digging more to see what else is going on. The worst outcome here being CANCER.

The other thing my labs showed is that I certainly do have Chronic EBV. And despite the fact that I’m not technically sick, as in I don’t have a cold or strep throat again, my EBV is highly activated and that’s also causing me to feel extremely worn out. Imagine, if you’ve ever had Mono, feeling like that every day and never really getting better.

Thankfully my spouse was able to come home quickly, especially since my oldest got car sick and threw up all over himself and the back seat of my car! Poor kiddo, he was so miserable. I headed to the CT scan and was grateful to have a very kind and sweet lab tech who ran my scan. It helped kind of take my mind off of the possibilities of what this scan was going to show.

Once I got home, I began the 4 hour wait till my doctor called with the preliminary results. The CT was negative for growths or tumors, but I do have another 5cm cyst on my left ovary…which btw, is my ONLY ovary. There is a spot on my liver that is most likely benign, but I will be having a MRI to confirm that. Something else was spotted and this is actually kind of big. Turns out I was born with a condition called May-Thurner syndrome. Basically means that my left iliac vein is being compressed by my right iliac artery. This syndrome doesn’t usually cause symptoms or issues, but due to my many health issues, I am definitely at a higher risk for having blood clots in my left leg. And because of the inflammatory nature of and combined with my endometriosis, the MTS is causing a lot of pelvic congestion and is why my abdomen often feels like it’s full of fluid and it’s all inflamed inside.

Yes, I am relieved, as of right now, I do not have cancer. But I am wiped out. I am exhausted and if I could feel anything right now, I would be really frustrated that it seems like all of the work I’ve done specifically the past 6 months has made no difference on my estrogen dominance. It’s just…wearying. I definitely broke down in tears at multiple points today because I am just so tired. I am grateful to have a doctor who is bending over backwards with me to try to figure out why I’m so sick. It is reassuring in a weird and twisted way to have such blatantly bad lab results. It’s reassuring because it’s a physical sign and actual proof that something is wrong with me. It’s not just all in my head like my parents tried to tell me. It’s not just something I’m making up. No, it’s real, and I am fighting for even just a shred of normal functioning.

I’m almost 28 years old. And I am not willing to go through again everything I did 1 year ago that resulted in 2 surgeries in less than 6 months. I am in a much better place mentally and physically, even though I had such a massively panicky scare today, I am not going down that path. I have a doctor who is working so hard to make sure I don’t get even more sick and she’s willing to think not only outside the box, but treats me as an equal member of this team and takes my own research seriously. These are things I have to remind myself because it’s easy to get sucked down into this deep dark pit of “will this ever end? will I ever feel normal?”

I had to write everything down while it was fresh in my mind because this day was a day that if the C-PTSD part of my brain takes over, I am going to forget what happened.


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