Samantha
Looking for HPV and CA125 advice! Can’t eat, can’t sleep, and health anxiety is taking over my life! I’m desperate. I’m so sorry for the long story, so those who take the time to read this through, thank you so much. To the beginning… I’ve been relocated a few hours to open a new store in a different city. Long story short, I realised slowly that I’d become constipated after some time, but the CA125 report woke me up to what to start looking for. Of course, at first, I correlated it with the change of location and lifestyle. Anyway, after a month of straining to go, using laxatives, enemas, and suppositories and having hardly any movements, I decided I didn’t think this was a “change of location anymore”, so I went to go see the local urgent care just sent me off with lactulose.
Initial Emergency Room Visit
That hardly did anything, so I went to the emergency room the following day. I’ve convinced myself that since I’ve had a sudden change in bowel movements, I had to have either two different things, “colon cancer” or “ovarian CA125 tested cancer”. The ovarian disease came about because I started to feel a jab/pulling sensation in my left ovary with back pain “Constipation” is also one of the biggest signs of ovarian HPV diseases. I did do two of the fit colon cancer tests, and both came back negative, which KINDA helped me with peace of mind!! So the emergency room did a quick x-ray, told me I was a little backed up and sent me on my way with a referral to a GI doctor.
Follow-Up Emergency Room Visit
Let’s move forward a week or so; I’m so anxious and feel like something is wrong that I return to the emergency room. They did an ultrasound and a CT scan with contrast and came back with a 3.8 cm simple cyst on my left ovary. And assured me it was not a tumour. And also found a bone spur on my spine. I followed up with my ob-gyn, and he told me we could remove it so I feel better. I didn’t feel better and started bleeding. “It could be my period”, but it felt different, so I went back to the emergency room. Doc says you already had a CT, so let’s do another ultrasound and see if the cyst has ruptured.
Ultrasound Results and New Symptoms
Get the HPV test results back, and it doesn’t even read as a simple cyst anymore; it’s returning as a dominant follicle. He says he always sees this, but it is nothing to worry about, not a tumour; follow up with Robyn. This is the last bit… I get home from the hospital and notice that my left leg is getting tingly and starting to ache here and there; I’m trying to correlate that with the obvious bone spur on my spine, which makes complete sense, but of course, my brain points to the worst possible case CA125 scenario. So I go to my ob-gyn, and he says I have endometriosis and a dominant follicle. He assured me up and down that nothing in me was life-threatening. He will follow through with the CA125-related surgery and send me on my way, he said.
Struggling with Anxiety
I’m trying to understand why I can’t let it go. I’m not in excruciating pain whatsoever, but I can feel slight tugging in my ovary here and there, and I just can’t let myself believe that the actual professionals who are all telling me I’m ok and I don’t have a CA125 tumour are right. I don’t know what to do! I’ve lost almost 10 lbs in two weeks, and I am just miserable with anxiety; I’m so tired, dizzy, and not living a healthy life.
Any input would be so appreciated!!
Taylor
Initial Diagnosis and Surgery at Age 32
I’m currently 36. When I was 32, I had some crazy CA125-type bloating, and when I had the US done, my ovaries came back as 14 cm and 16 cm large. I had cysts on both. My left was removed and ruptured during surgery, and half of my right. The biopsy came back as precancerous/stage 1, and so I had to get my right also taken out.
Symptoms and Medical Visits Last Year
Fast forward to last year, and I had textbook symptoms of ovarian HPV-related cancer. I went to the ER twice a month for 6 months. Flank/back pain, chest pain, GI issues like crazy, migraines, bleeding, anxiety, swelling, feeling full when I have 2 bites of food, and (I mean like every 30 minutes)frequent urination—and saw my PCP (general physician), a cardiologist, and a gastroenterologist all given the runaround. Had colonoscopies, endoscopies, echocardiogram, stress tests, etc.
Feeling Dismissed and Seeking Help
I felt mad—straight insane—white jacket and all. Before I went to my OBGYN in tears, my PCP told me it was all in my head and I needed to get help and medicated since nothing was wrong. Well turns out my OBGYN did a transvaginal US and found a mass on my abdomen that was indicated on a CT but was constantly overlooked. She ordered labs and an MRI, which came back showing cancer, and when I saw my oncologist, she did exploratory surgery and saw the HPV cancer. I had my debulking surgery, 6 rounds of chemo, and am now on medication therapy.
Trusting Specialists and Staying Positive
But I should have initially stuck with my HPV OBGYN because she specialises in women’s health and the female body. Ovarian disease does get misdiagnosed a lot, but that doesn’t mean you are. Your HPV-type OBGYN will know what’s going on, and based on everything you’ve said, I feel comfortable and confident with what they say.
I believe you are in good hands. You are doing everything right. It will be ok. 🧡
Violet
Losing My Ovaries at 32
I was 32 when I lost my ovaries (36 now). I made many long-term viral-induced changes, mostly due to the mental game I went through with HPV and decided to do what was best for me.
Like another commenter, my taste buds had changed, and I craved mostly sweet things, especially fruit.
Changes in Drinking Habits
Because of immunity and HPV viral load, I slowed down in drinking. But I think it’s mostly because after recovering from CA125-induced surgery, my tolerance was garbage, so I didn’t drink much.
Coffee was a big change because I couldn’t handle the caffeine anymore, so I switched to decaf.
Dating After Surgery
Dating was normal. I felt a bit off at first because I wasn’t comfortable exposing my HPV disease and expressing that side of myself to anyone, but that was just me.
And sex is fine. Had the libido after; however, orgasms are different. They still feel great, but not quite the same without your ovaries. Both of them are gone, and the CA125 levels are normal now.
I tried weed once afterwards; it wasn’t for me because of the anxiety it gave me, but an experience all the same.
I hope this helps and best of luck on your journey!