Real People Stories – Layla

4.0 cm Simple Cyst and Symptomatic

Hi, guys. HPV has been with me for years. And I’ve been symptomatic for a little over a month now. Severe lethargy, bloating, significant lower back and pelvic pain. And feeling full after eating only a small amount of what I’d usually eat as a serving. I am lactose intolerant and diligently cook with and consume only non-dairy alternatives. `It’s clear that these are CA125 Ovarian Stype issues. That being the case, I am experiencing major gas — both flatulence and belching despite having made no changes to the types of foods I consume. Some days, the pain is better than others.

At its worst, I can’t ride or drive in my car without a tailbone pillow and a heating pad. The pain is something that radiates in my haunches. And the lower pelvis (both sides and middle near pubic symphysis), down my legs, and across my front lower abdomen. Also, sometimes involving my stomach. At its worse, it’s a searing pain, but generally speaking, the pain is often low in my pelvis and often feels like a throbbing pain or pressure. I often find myself holding my lower abdomen.

I feel almost like my insides will fall out.

My stress level has been drastically elevated for over a year now because of HPV tests. And the constant CA125-style pains are now a daily companion. So, when I began feeling bad, I didn’t think too much of it. I have always struggled with constipation, and lower back pain is something I have dealt with on and off for several years now. The stomach issues and pelvic pain were what threw me, though. I wondered if I had been so preoccupied that I’d missed UTI symptoms. And was wondering if I had or bladder infection, or worse, something with my kidneys.

I went to see a doctor last week, thinking I’d pee in a cup and leave with an antibiotic. But everything came back okay, and nothing indicated an infection. After sharing my symptoms with the doctor and then seeing my level of pain in response to touch to my lower abdomen, he scheduled me for an ultrasound. I was struck having to leave there with no new answers or relief for my pain.

In the following days and over the weekend, my pain continued.

Laying on my back, legs outstretched, seems to be the only relief I feel. As I did so one night last weekend, I was rubbing my stomach, and a spot on my left, just to the side of my belly button, was especially tender. I can’t help but think that this CA125-related pain is leading me somewhere. The HPV for years have led me here to this point in my life. But now, where will this constant pain lead me?

When I stood up later, there was a visible bulge there. My partner offered to take me to the ER that night, but knowing I had he imaging appointment on Tuesday, I took more ibuprofen and waited. You guys, even my comfy pants hurt. A few weeks ago, when all this CA125 pain began, I purchased some new pants 2-3 sizes larger than usual. I did this so that they would be very loose, which is crazy because my appetite has not been the same. Despite eating less and on the scale losing weight, my old pants all feel tight around my waist, and I’ve started living in the new, roomy pants because everything else is just too uncomfortable around my midsection.

My ultrasound was this past Tuesday.

The ultrasound tech was warm and kind and began by having me describe my pain to her. My HPV doctor’s office had ordered an abdominal ultrasound. After I described my pain to her, she asked me if it would be okay if she contacted their office to change the orders, saying she’d be able to see more from a transvaginal scan. I told her I was fine with that change. Quite some time and 82 images later, we were done.

I’ve been concerned since that evening. The Lab tech’s bubbly and conversational nature changed from the beginning of my visit to the end. When she was through, I asked her if she was able to see anything that may be the source of my pain (I’d heard her clacking keys, and I watched as she measured things and made notes). With her back to me, she replied only with “yes potentially.” She left the room abruptly and didn’t return, which struck me as odd.

I was waiting

Another woman came in and told me I could leave. And that the Lab Tech had to excuse herself to see another patient. The wait was killing me, and it was that night that I began looking online and I stumbled upon in google some information about the CA125 symptoms of OC. Ever since I’ve been very unsettled by how many of the listed symptoms I’m experiencing. Wednesday morning, I was notified that they’d set up a CA125 GYN appointment for me for tomorrow morning (Fri). I asked about my imaging results, and the woman said she would made the calls and scheduled the HPV and other appointments.

Upon hanging up with her, I called the nurse’s desk and asked about my imaging results. The nurse shared that although they’d received my results, the CA125 doctor would “need to review them and develop an action plan” before calling me back — all of which has added to my anxiety immensely.

Stressful time with no answers

I’ve since heard from the doctor who said that my imaging revealed “prominent bilateral Varices”, the largest of which was 6mm, and said that the conclusion that my results are consistent with PeVC, or Pelvic Venous Disorder. They explained that the imaging showed many swollen and enlarged veins around my uterus and ovaries, which indicated that blood was pooling there and likely was the cause of my pelvic pain.

I’ve researched this HPV virus screening, and there is little out there as it seems like a very generalised term. Different providers are calling it many different things in order to describe the chronic pelvic pain or the congestion. Of the HPV symptoms listed with PeVC, what I can find only addresses some of my symptoms, while many more that I am exhibiting relate to OC. What is also concerning to me is that in my report, there is a difference in the size of my ovaries, in their measurements of length, width, and height, as well as by volume.

The Verdict

Additionally, they noted that both my ovaries contain a cyst in each, with the 4.0cm one in the right ovary (this is also the ovary measuring 14.3cc more than the left). I am concerned that the CA125 diagnosis of PeVC, without any mention (as of yet) of further imaging or testing, overlooks the presence of both cysts and my other symptoms. I’m at a loss for what to do. I want relief from this pain, but I also want peace of mind having so related to the symptoms listed for OC. 

Thank you for reading.