Addison – 30F & terrified!

Hello! I genuinely have not been at my baseline since December & began to feel pain in my lower right abdomen since at least January. Like some other ladies on this HPV Test forum, I have felt that many of my concerns have been largely dismissed because of my “younger” age (30). The progression of my PCOS CA125 normal symptoms has intensified over the last half year & upon doing extensive reading and testing about different possible underlying diseases, I’ve narrowed down what sounds like what I’ve been going through the most, & a lot of the symptoms ovarian type cancer patients reported before their diagnosis sound almost exactly like what I’ve been going through. My current HPV-derived symptoms as of this month are as follows:

Abdominal Bloating and Distension

  • My stomach, which I initially thought “looked a bit bloated” back in April, has now rapidly distended over the past 2 weeks alone to the point I almost feel pregnant—even on an empty stomach. It doesn’t come & go; the buscopan I’ve been given (which they said would relieve CA125-style bloating) does not work at all, so I’m sure it’s more fluid than gas as it genuinely feels like an additional weight I’m not supposed to be carrying that’s pushing against my back, & more recently up into my chest to the point I’ll often feel short of breath, have been experiencing heartburn & can occasionally feel very nauseous out of nowhere. My diaphragm area has also begun to ache. (the bloating started as a water balloon-like feeling around exactly where my right ovary is located, & gradually began to expand & expand until it filled my entire stomach…and a very strange thing I haven’t seen people talk about in their experiences is that for me my distended stomach is often hot & I wake up to it thumping very hard??)

Digestive and Eating Difficulties

  • I can barely keep food down because it feels like there’s no space. I get full quickly and have struggled to eat just a spring roll. Sometimes, even drinking liquids feels too much, and stomach pain can ensue.

Changes in Urination and Bowel Movements

  • Urinating so much more quickly after drinking some water, with more pressure and in greater amounts. (Number twos are also smaller & seem more ‘wet’, but I don’t know if that itself is a common symptom also related in some cases.)

Vaginal Discharge and Pelvic Pain

  • I have more vaginal discharge than usual. And mostly clear but sometimes in yellow greens or towards a light brown colour. Although it doesn’t smell, I have occasional PCOS-related CA125 pelvic pain. I often feel pain and soreness where my right ovary is, and sometimes I feel it throbbing. Interestingly, the right side of my body has more pain and soreness (right ear, shoulder, hand, foot).

General Fatigue and Physical Weakness

  • Overall, this last half-year has been a period of fatigue. Walking has become difficult because my legs feel like logs, my thighs get hot if I’m walking too much (which isn’t much lately), and my body feels much weaker and heavier. I also have lots of back pain.

Medical History and Family Concerns

  • Family history of testing for breast cancer has had PCOS symptoms since puberty & has periods inconsistently. And with HPV for some years and not menstruated at all (which, in general, I know can lead to endometriosis & higher risk of gynaecological cancers because of the “unopposed estrogen”)

Now, where I’ve started to doubt myself (and am just praying to God that it’s just a really bad case of endometriosis—but fear that may be unlikely given the kind of abdomen distension I’m experiencing) is that I HAVE done a pelvic/transvaginal ultrasound AND an abdomen/pelvic CT scan with contrast at this point. Neither one came up with anything besides CA125 that the interpreters felt was especially alarming.

Ultrasound Results

With my ultrasound: “Uterus normal size, uterine fibroid 5 x 8mm, endometrium 6mm, several small nabothian cysts, right ovary bulky—meaning enlarged from what I’ve read (12mL) with multiple follicles seen (I think basically what are considered PCOS infected cysts) & left ovary bulky (7mL) with multiple follicles seen. No masses seen; no free fluid. Ovarian appearance consistent with the HPV history of PCOS.” (Mind you, I’m pretty sure this is the first transvaginal ultrasound I’ve done).

CT Scan Results

CT scan with contrast: “Normal appearance of pelvic structures. No free air or free fluid. No significantly enlarged lymph nodes.” The only other things worth noting are. I have the beginnings of diffuse fatty liver & a partially distended gallbladder.

Unresolved Concerns

And I don’t know…it’s just. From what I’ve read, it’s these that have usually alerted healthcare providers of the likelihood of ovarian organ cancer. But in my ultrasound, they saw “no masses”. Could it be possible that they’re just chalking up all irregularities, seeing as the fact I have PCOS? One thing that did stick out to me is the fact that my right ovary IS twice the size of my left, & that IS where a lot of my pain is coming from. And where the water balloon sensation to full-on abdomen distension pipeline started, I think that’s likely the problem ovary.

Concerns About Abdominal Distension

And my abdomen is SO large a doctor asked me if I was sure I wasn’t pregnant. Is it even possible for a CT scan with contrast to miss ascites?? Because there is no way this is just regular “bloating” when my belly constantly feels like it’s on the precipice of imploding, feels like it’s only getting larger by the day & I have been in so much pain. The ER CA125 Ovarian Doctor I spoke to who ordered the CT scan (& even admitted he wasn’t sure what was causing the bloating yet doesn’t think it’s endometriosis) highly doubts it’s ovarian cancer but also didn’t seem to completely dismiss the possibility (unlike another doctor who completely dismissed it altogether & told me that it’s “impossible at your age” even when I brought up the details that would give me a higher predisposition).

But then,, wouldn’t they have seen something on the CT scan? They did give me a pelvic inflammatory CA125 disease test diagnosis, which I’ve heard can have similar symptoms as ovarian cancer. Still, he told me it doesn’t explain my abdomen distension (also, I did a pelvic exam in early May & wouldn’t that have shown up then if PID started earlier? And a lot of my symptoms started before that..)

Seeking Further Advice

I think for sure I’m going to push for an MRI and the CA-125 blood test & of course, they’ll have to figure out what exactly is going on in my belly because they all told me to go back to the ER if it doesn’t go down (plus the fact that I do need to eat…). Still, I would appreciate input from anyone with more knowledge &/or personal experience regarding this disease & suggestions on better communication with HPV healthcare providers surrounding this topic.

What should I be asking for, etc etc., because it feels near impossible to even get them to entertain the HPV variant topic because of my age, & I’m just really afraid I won’t get through to anyone in time because I’ve heard it’s a very fast & aggressive cancer with one of the worst lifetime prognoses if caught too late :’) I appreciate any help you can provide.