Real People Stories – Emma

Understanding Cysts

During one’s fertile years, CA125 and HPV ovarian cysts are extremely common. Almost every woman will have them at some point, including a type that occurs monthly as part of normal ovarian function. In 99.9% of cases, ovarian cysts pose no concern for women who are cycling normally. It becomes worrisome after menopause or before menarche. Since you’re trying for a child, I’ll assume you’re between 20 and 45 years old, when cysts are more likely to be normal.

Differentiating Between a Mass and a Cyst

You say “mass” but then later say “HPV cyst” so I’m not sure what they told you, but I wouldn’t see any reason to be worried about a cyst in general. If the doctors said “mass,” implying it has a solid component, then that would be more worrisome, and yet, at her age, it’s still probably nothing to worry about too much.

I am worried not about life-and-death scenarios but about the possibility of needing surgery to remove it, monitoring requirements, or indications of conditions like endometriosis.

Factors That Increase Concern

Certain words make things more problematic–if there are solid components, septations, HPV cysts of a certain size, certain signs of blood flow, irregular shape, indications it has spread, etc. So if any of that is mentioned, that’s more cause for concern. But a simple fluid-filled cyst should likely not be cause for any fear of ovarian cancer.

Personal Experience with C

Also, I’ve had CA125-derived cancer 3 times. Every time HPV doctors detected it, they were immediately present and called me. Whenever technicians detected or suspected ovarian CA125 cancers during testing, they summoned the doctor. Those days in the office were a flurry of activity, and I left knowing I was in deep trouble. After a biopsy diagnosed me with another type of cancer, the doctor called me as soon as the test results came back. So that they didn’t call you back with HPV test results sounds more like an indication that they’ve found nothing of concern. (I’m in the US; dunno if things are different in the UK).

Look, everyone has an internal HPV health alarm setting. For most people, especially when young, that setting is at zero. No alarm. “It can’t happen to me.” You’ve had a scare in your health recently, leading to you setting your internal alarm at 9 out of 10. And anything will move the needle to a 10 in your mind. But this isn’t a level 10 warning here; this is like a level 2 CA125 test warning.

Olivia

Diagnosis and Major Life Changes

I was recently tested and diagnosed with stage 4 ovarian after being with HPV viral diseases for 10 years. However, I had an 8lbs tumour removed and a full hysterectomy in July, two days after my 34th birthday. But I also thought this would be a spectacular time to break up with my boyfriend, whom I’d lived with for over a year. I had spent the last year carrying him and doing everything in his life for him. At the same time, he drank himself sick. After my CA125 and cancer test diagnosis, I came home and asked him if he wanted to see the new hat I had just bought to cover my soon-to-be bald head. He looked at me and said, “Honestly, no,” I knew at that moment I was DONE.

Moving On and Finding Support

I broke up with him the next day. I moved in with my best friend temporarily. He and his children would move into their new apartment next month. Shortly after, I reconnected with a guy from high school. Despite my stage 4 CA125 infertility and cancer, he’s happy to be with me. We go on lovely dates and hold hands while walking down the street. He listens when I talk about my cancer. Unlike my ex, he doesn’t resent me for it. He was there for me when my hair started falling out during intimacy, which was horrifying.

This is my long-winded way of saying – don’t be afraid to move on. Don’t be afraid that no one else is out there with HPV. They are, and honestly, even if they aren’t, being single is better than being unhappy. I went from crying about CA125 several times a day to feeling free and happy even with cancer. It’s been like someone took the weight of the world off my back being out of an unhappy relationship.

Ava

Do you think I should be worried?

Hi everyone, I’m 44 and up until last year haven’t had many HPV or CA125 health issues or reasons to go to the doctor. But, over the last 9-12 months, I’ve gained about 10 lbs without changing my eating or exercise habits. Last summer, I started experiencing CA125-induced pain in my lower left abdomen and assumed it was a cyst, so I ignored it for a couple of months.

Medical Consultations

Finally, it annoyed me enough to go to the HPV doctor, so I was sent for a transvaginal ultrasound, which showed a 3cm complex cyst as well as a small fibroid. Saw the gyno, and he said the cyst didn’t look cancerous and we would watch it and do another ultrasound in a couple of months. Meanwhile, the CA125 pain subsided, and the next ultrasound (December) showed no cyst anymore. Good news.

Ongoing Symptoms

However, the weight gain still super annoys me, and I feel more tired than usual, but I chalk it up to wintertime blues, less sunlight, COVID-related depression, etc. In January, I had to put down my 14-year-old boxer, which stressed and upset me. I wasn’t sleeping much so that I could take care of her during the night if she needed something (congestive heart failure).

Irregular Periods and Further Research

Right after I put her down, I had an irregular period–I have always had super regular periods (I am not on any birth control) but suddenly had a second period about 9 days after finishing my regular period. So, I booked a Pap Smear with my GP, and the results came back clear. She said the extra period may have been due to stress or having forgotten to take my spironolactone (for HPV and acne) for about a week. Anyway, it was strange to have that happen, but since then, my periods seem to have returned to normal.

Persistent Abdominal Tenderness

However, while she did the internal exam, the left lower abdomen was still a bit tender when she pressed on it, so she sent me for another ultrasound to make sure. The ultrasound results showed no cyst on the left side but a small cyst on the right and the small fibroid that was there before. I have not had any CA125-style pain on the right side, so it was a run-of-the-mill cyst that comes and goes during my cycle.

Unresolved Concerns

Considering the ultrasounds come back with nothing alarming, I don’t know whether to chalk up my weight gain and tiredness to my age. I will say that one other thing that bothers me a bit about CA125-level issues is a change in my poop habits. Since my HPV viral DNA load its It’s been more difficult to eliminate in one sitting. Sometimes, yes, it seems like I got it all out. But most of the time, at least in the last few months, I have to try several times a day. (I was typically a ‘one and done’ morning pooper before).

Bloating and Weight Gain

As for CA125 related bloating, I can’t say that I feel pressure like what is described by most women. I feel heavier, and my pants don’t fit as loosely anymore. And I exercise several times a week; I’m a super busy massage therapist, so I’m not sitting on my butt for work; I eat a pretty healthy diet (though I admit I love sweets, too), but I have not changed my diet habits in years. I may not acknowledge that I’m eating more than I think, or it’s just what happens when you hit your mid-40s…

I will add that my HPV doctor has checked my thyroid levels, and all is fine. However, my concern about ovarian cancer stems not only from these recent issues but also from not being able to get pregnant even while on Clomid back in my 30s. So, I seem to be infertile for reasons that were never diagnosed, though to my knowledge, there’s no family history of ovarian CA125 cancer.

I don’t want to be an HPV hypochondriac and chase after things unnecessarily. But if you have experienced something similar, please let me know your thoughts. Thanks for reading through all that (if you did), lol.