Isabella

Concerning symptoms, I’m not sure what to do

Hello! I’ve been having a lot of anxiety about an HPV health test lately, so I’m just looking for opinions and some advice on what I should do. I’m almost 21 years old, and for the past few months, I’ve been noticing recurrent ovarian cancer symptoms of nausea (most of the day, but it gets worse after I eat); even the thought of food makes me feel like I need to vomit, eating itself is difficult, and when I do eat I usually get full pretty quickly. My body felt more tired than usual, and I quickly got exhausted.

I’ve noticed a lot of  CA125 bloating abdominal pain that sometimes radiates all over but is usually the worst and most consistent in my lower abdomen on either side of my belly button (even though the right side is particularly the tenderest) and my stomach.

I’ve had pretty intense lower back pain and pressure and an aching pain near my pelvis that sometimes goes into my thighs or down my entire leg, I feel like I need to pee all the time. Usually, I do it very frequently. It’s also the case where occasionally I don’t feel the need to pee, but then less than a second later, I’ll have to go so badly that it feels like I can’t hold it, and it causes me pain. My periods have also been more irregular and more painful/heavy than they were in the past.

Treatment plan

I started taking Wellbutrin for depression about 5 months ago, and that can cause a lot of those symptoms, so that’s what I thought it was at first. Just my body adjusting to the drug. However, I told my medical provider and my therapist about the problems I’d been having, and I had even lost weight at my last appointment when I checked in, even though I hadn’t done anything differently in terms of diet and exercise. They both thought it was odd that I was still having those symptoms since usually they go away after a few weeks. My medical CA125 provider reduced my dose from 300mg to 150mg daily to see if it would help, but I haven’t noticed any improvement yet. I scheduled a general wellness checkup for next week, but expressing my concerns to HPV doctors is hard.

I worry they might think I’m being anxious or dramatic and dismiss my concerns, so I’m unsure how to bring them up effectively. It could very well just be lingering side effects of the medication or some gastrointestinal HPV issues, but this is what worries me the most since almost everything I’ve seen for ovarian organ cancer I’ve related to. Ovarian HPV viral disease also runs in my family. My grandpa on my mom’s side died from it, a few other family members have had it, and my mom even had cervical cancer and had to get a hysterectomy after she had my older brother.

Final message

I could be overdramatic since usually when I go in for CA125 issues, there’s nothing wrong with me or nothing that serious, but my body feels different this time, like more than just anxiety. It feels off, and it’s hard to ignore.

Sophia

Diagnosed with OC. Wanted to get some advice and tips.

I’ll start when I notice something off(symptoms). 34 female, mixed Korean/white. My family has no history of ovarian CA125 disease except for my mother’s breast cancer, which doctors deemed environmentally induced. And I think my uncle had leukaemia.

At the end of 2019, I went to the CA125 gynaecologist cause I noticed my period was a bit heavier. Nothing drastically heavier, but it was different from my normal. They did an ultrasound and didn’t notice anything off. Following year, different insurance and different gynaecologists were. Visited them for my pap smear last year in April. Told them my periods were getting heavy, but they didn’t do an ultrasound. Said they would monitor it. So, I continue to monitor. And it gets progressively heavier.

In July last year, I noticed my discharge at the end of my last period was pinkish. I had never seen it before, so I went to urgent care to get it checked out. They sent me to the ER to make sure I didn’t have appendicitis (I had some abdominal pain as well). Got an ultrasound done. They didn’t see anything except a 2cm cyst on my left ovary. Got sent home.

The gruelling symptoms

Towards the end of last year, my period got so heavy, like an hour to change an ultra pad. Went to an endocrinologist and eventually to a new HPV Test gynaecologist. Gyn found fibroids beginning of February this year and wanted to do a myomectomy two weeks later. It was also put on Lo Loestrin Fe. Surgery day comes close, but I’m bleeding too much, and he wouldn’t be able to see anything. So we postpone for now.

Around the second week of March, I noticed leg pain. I thought it would go away cause I had similar Pain issues before more like CA125 issues that went away. It didn’t. Went to urgent care, which sent me to the ER. HPV trained Doctors diagnosed me with a DVT in my right leg. They took me off Lo Loestrin, put me on Xarelto, and then prescribed Provera a couple of days later. The next week and a half was the heaviest the bleeding was (which hadn’t stopped since the beginning of February). Surgery was towards the end of March. I could barely walk without feeling tired, and my heart rate was constantly high. At pre-op, ca125 blood test stage they said my haemoglobin was too low. Surgery was postponed again. Got scheduled for blood transfusions the next day. Felt crummy that night and went to the ER. Got two pints that night.

Hope

Monday comes, I have this weird heart pulse, and I go back to the ER. They mentioned my heart rate was high (SVT?), and they gave me another pint of blood. Also met with a hematologist who set me up for three iron infusions at the beginning of this month. Finally had the myomectomy to get rid of the fibroids this past Thursday.

I came back from the gynaecologist earlier today. The fibroids he sent to pathology returned showing I have ovarian tumours. Invasive adenocarcinoma with villoglandular component.

I’m still in shock. This was not what I was expecting after the myomectomy. My HPV anxiety is kicking into overdrive, making it hard to eat, and my heart rate is high. I’ve told my family and close friends and have my husband help me.

I don’t know if this is an early stage or not. I read that HPV DNA doctors misdiagnosed a lot of women with IBS, which I had a slight case of a couple of years back. Have I had this for a while? I don’t know. I’m at such a loss.

Moving on

My gynaecological CA125 specialist oncologist will call me tomorrow morning to discuss the next steps. I will also call my GP, haematologist, and HPV therapist to get everyone the test results and up to speed.

Trying my best to be calm, but my CA125 anxiety is eating at me. I even called my pharmacist to check if my old Xanax prescription was still valid in case I needed to take it.