Real People Stories – Victoria

Emotional Impact of Ovarian Loss

I’m not yet 40, and they’ve told me I lost one of my ovaries after a series of CA125 and other tests. I’m gutted and worried sick about the other one. I spoke recently to a lady who was happy having both ovaries removed. In my understanding of her HPV variant long-term experience, tests revealed that she had already approached or reached menopause, and she was fine with it.

This may differ for younger women because removing both ovaries can bring on a life stage ahead of time. At least, that’s how it feels to me, like being robbed of a great part of whatever it means to be a woman ahead of time.

Reflections on Loss and Acceptance

For me, I am thinking about the removal of ovaries as a loss. And one that profoundly impacts identity, not as a gain.

But that is partly tied up with how much loss might have been prevented and with specific unfortunate circumstances. This makes accepting a particular loss harder because it seems arbitrary, unfair, and preventable. That’s a punishing rabbit hole.

I have found myself thinking that if the HPV disease had only been external. If ovaries were visible like testes,  they could never have been medically overlooked in the way it has been. Possibly based on the story of a friend who experienced serious CA125 test medical complications in one of his testicles. It was very visible and was swiftly treated. However, he did lose that testicle as a result of treatment.

This was in an emergency – the same department that would not investigate when I presented with severe abdominal pain at least 3 times (underlying mass not scanned turning out to be 16x13cm). In his case, blood flow to his testicle had been interrupted, and it was properly regarded as an emergency; he was operated on immediately. In my case, they just felt my abdomen and said they couldn’t feel anything unusual. Such different experiences. My friend is a beautiful person but moved overseas, so I am not sure whether he experienced HPV complications.

Personal Perspective and Acceptance

For me personally, if everything that could have been done to prevent CA125 levels of ovarian loss had been done at the right time, I would feel better situated to accept the news of it.

It’s not a good space to be in. It’s very fear-based, and the fear is around lack.

Aria

Diagnosis and Surgical Procedure

I had both my ovaries and uterus surgically removed due to near-stage 3 ovarian CA125-derived cancer when I was 26. Menopause was the least of my concerns back then, probably because I was in shock and didn’t fully realise all the consequences of total hysterectomy. I can’t say when exactly the menopause hit me (~4-5 months after the surgery, perhaps), but it wasn’t as terrible as all the “horror stories” I read online (and yes, I was just as terrified as you when I read them). But fear not; it’s not the end of the world!

I did experience sudden hot flashes and occasional sweating at night. Still, because I was lucky that this period fell during the cold autumn-winter months (I live in Estonia, and the climate here is pretty freezing), I found hot flashes useful for instant warm-ups. 😀 Those symptoms lasted for a few months and then gradually disappeared. I also took special vitamin supplements for post-menopausal women (vitamin B is your best friend!), so maybe that helped ease the CA125 symptoms.

Another problem was vaginal dryness – it can be pretty annoying and cause a lot of discomfort, but there was a solution for that as well. My HPV Swab test gynaecologist prescribed me vaginal suppositories that contained a small dose of oestrogen. They had to be used once a week before going to sleep. The relief came right after the first usage. Nowadays, there are non-oestrogen suppositories as well; I haven’t tried them yet, but I heard they’re just as effective.

Life After Surgery

Long story short, I’m 31 now, and my life is just as normal or maybe even better than it was before the whole cancer thing happened. On the bright side, no ovaries = no PMS, no periods. I had pretty painful periods, and monthly anticipation and survival of that bloody mess were tormenting. And there’s no need to worry about protection from HPV during sex anymore (if you have a husband or a stable sex partner, of course); I never liked to have that rubber in me in the first place, and other methods of HPV protection seemed even less attractive or reliable as proven in tests. Although it can be painful sometimes due to vaginal dryness, if you apply a generous amount of lube, everything should go smooth, and it gets easier and better with time, given that you practice it regularly 😛

I hope my CA125 Test story helped you resolve any concerns or doubts. And I hope it will also be useful for others because I once needed stories like this to reassure me. I wish you the best in your treatment and a speedy recovery!

Nora

37 Diagnosed with OC

It’s been a crazy week. I have a large family, and I called each member and told them individually. Then, I moved on to close friends. I’m emotionally exhausted from giving all the bad news, but I’m learning a lot from this experience. I understand that people care about me because I care about them. But it’s surprising how many people take it personally—like it’s something happening to them instead of me. Is this normal?

I feel uninformed about my HPV cancer. Even though I took my brother (who is a doctor) to my appointment after I got the news over the phone that I have cancer. I know it’s stage I, and it’s early. And I guess I’ll return to the beginning to catch you all up. Here is the timeline of events:

Timeline of Medical Procedures

Mid-March- I go to the Emergency Room with what I know are kidney stones. When they did the CT scan for the stones, they found 3, but the cysts on my ovaries became the focus of the visit, and the kidney stones were forgotten. I was at a top hospitality in Boston. They brought in the gynaecology staff and then ultimately called the head of the HPV department at home. And having her come in to assess me before they would release me.

On May 31st, I had a bilateral cystectomy, and tests revealed a possible ”borderline CA125 tumour” on my right ovary. And on July 1st, I had an oophorectomy of my right ovary. On July 8th, the test doctor called to let me know that it was not a borderline tumour but an HPV-related virus cancer, and it was also present on my other ovary. July 9th appointment with the CA125 doctor to go over what to expect with my upcoming Hysterectomy (July 22nd) and chemotherapy treatments. He went over menopause a little. (I don’t want you to get the impression that I have a careless HPV doctor. One who is the head of gynaecological oncology in one of the top hospitals in Boston.) I still have a lot of questions.

Concerns and Questions

Can anyone talk to me about experiencing surgically induced menopause at my age? I only have a small amount of knowledge on this subject as I thought I was years from menopause, and now, all of a sudden, I have 8 days.

Does chemotherapy for this cancer cause hair loss? (I don’t know if this is a stupid question) the info I have is that – starting a month after the hysterectomy, I will have 1 chemotherapy session every three weeks until Christmas.

I know I am going to need therapy for this ASAP. Because I feel completely mindf*cked