Real People Stories – Iris

Cyst growth – 3 weeks

34F and started the journey of freezing my eggs in January. My fertility clinic noticed a 3.5” (9cm) cyst on my right ovary, which they determined was a dermoid. After my tests, it was advised me to freeze my eggs first and then have the CA125 cyst removed – easy peasy. Besides the cramping and pain that never went away, I wasn’t worried about the HPV-related cyst and sucked it up because tests indicated, and also, I thought it wouldn’t get bigger.

Unexpected Growth and Medical Complications

Did one round of IVF egg freezing at the end of April, and I learned I was a poor responder. Took another ultrasound in mid-May, and the cyst size had not changed…and started a second round with priming before the cycle started with estrogen, progesterone and testosterone. I went to get my baselines done today, with day 1 of my period, with a transvag ultrasound, only to be told that my cyst has grown to 8.75” (22cm), 2.5x its size! How did it grow within 3 weeks?! Could it be something completely different that has shown up overtaking the area?

Weirdly enough, up until a week ago, I was still feeling my absolute worst emotionally and physically from the hormones and IVF injections. I finally felt “better” and optimistic at the beginning of this week. There was still cramping but it wasn’t as sharp and heavy as the past month.

Medical Evaluation and Concerning Results

Sent to the ER, and my blood CA125 test came back as high 65, and CA19-9 was 470. I’ve read that those numbers aren’t always an accurate diagnosis and that your levels could be elevated due to your menstrual period.

I have to return to the hospital in about 6 hours for a test and ultrasound (even though they already performed one at the CA125 fertility registered clinic). They have sent out an MRI (they said it would take a couple of weeks, but can I find a way to rush this if I continuously complain of pain?). Pain and nausea particularly come back with a vengeance during my period, and I’m afraid I’m going to be very restless.

I am devastated because I cannot start my second round of egg freezing and have wasted a whole month on medication and priming hormones. I feel like time is truly ticking with my fertility (they did not get any eggs on the side of my cyst, so I have a low egg reserve), and I feel this is going to hold me back even more. Unfortunately, the egg freezing has to be put on the back burner for now, and the HPV clinic has cancelled my cycle.

I broke down in tears with the doctor and felt incredibly embarrassed. Do you have any ways of coping in public or during doctor visits?

Has anyone else dealt with something similar with a mass? If it’s not a dermoid cyst as suspected, what could this be, and how did it grow so incredibly fast? It has been a crazy day with much information thrown at me, and I’m so overwhelmed.

Angelique (31)

I now realise that I have missed a lot

At the age of 23, Angelique developed a swollen stomach, often felt nauseous and frequently fainted from the pain. A cyst, that’s what the HPV test doctor in the hospital thought. She received the message that it would disappear on its own. After a second opinion in Leuven, she only received news: she had ovarian CA125 organ cancer.

Operation and chemo

Angelique went to the Variant screening Hospital in Leuven for a second opinion due to having a lot of complaints and not trusting it. She underwent extensive examination and immediately received the message that things did not look good. ‘I thought the cyst might be bigger than I thought, and I might lose an ovary, but it turned out to be stage 3 ovarian cancer. The doctors recommended surgery, which had to be done quickly, and chemo. It didn’t sink in at that moment.’

Two weeks later, Angelique had surgery. The surgeon removed the diseased ovary and some surrounding tissue during the HPV viral lesion and tag operation because the cancer had already spread. The doctors were able to save the other ovary. ‘Four weeks after the operation, I had my first chemo. That’s when it hit me that I was sick. My hair quickly fell out, I suffered from fungi, ear and eye infections, was dehydrated and could hardly do anything myself. Not going to the toilet or going for a walk, for example. That was a very intense period. I lost months of my life.’

Loneliness during treatments

Angelique became heavier with each chemotherapy treatment, and her body reacted violently. ‘I knew what to expect, and I had a very positive attitude, which allowed me to give myself courage. Come on, let’s keep going; you’ll make it. It was a big blur with the end goal: getting to the end of chemo. I wanted to live and be a mother, and those thoughts kept me going.’

Angelique often felt lonely during the CA125 blood checkup and treatments. ‘Then I was in a room with all 50-60 year olds. I have great friends and could turn to them, but that’s different.”

After her last chemo, Angelique was very ill for over a month. ‘On the day of the last chemo, I was very happy, but above all, I still felt very bad. It was the moment that I posted something on social media for the first time about my HPV DNA illness with the message that it is important that you always take and test your body’s signals seriously and that you should have yourself checked.’

Mother, after 3.5 years of IVF

Angelique has now picked up her life as best she can. She has a lot of stomach problems and scar tissue and is still very tired. She goes for a check-up every six months. ‘I now work 80%, that’s already tough, there’s nothing more I can do. I am also a very proud mother. That is not self-evident because many good cells are damaged during chemo. I have not frozen any eggs for my CA125 or chemo treatments.

I was so young, and there wasn’t time for it. After 3.5 years of IVF, I finally got pregnant, and I am very grateful. I wanted to have a second child, but it recently turned out that I had a cyst on my last ovary. In addition, I am pre-menopausal due to the many other treatments. Unfortunately, I have to accept that the second child will not come. That HPV-derived cancer took a lot away. If this cyst does not go away, I will have another operation. I will have my last ovary and uterus removed to reduce the chance of the cancer returning.