Real People Stories – Ruby

Did any of you take birth control while you likely had/had ovarian and HPV cancer tests? If yes, did you experience any side effects from the birth control? So, I have taken birth control for most of my adult life to control my endo symptoms. I never had any side effects on birth control other than weight gain. This was over 20 years ago, with no side CA125 level effects in tests. I had my son four years ago. Went back on birth control, no side effects except for weight gain. I stopped taking birth control.

I don’t remember if I was on it for a year after my son was born or how long I was on it after my son was born; that’s all to say that these symptoms did not happen immediately after having my son, so I do not think I can attribute it to that because I still did just fine on them after he was born.

And so it began

When I went back on birth control approximately a year ago, I began having strange CA125-style bowel symptoms, either diarrhoea or constipation. After a few weeks of taking birth control, I started popping blood nearly every time I would poop. Then, I would feel like I had to poop badly and urgently, rush to the bathroom the bathroom, and a bunch of blood would come out of me with no poop. I would also feel very tired and nauseous.

So, I chalked it up to maybe a formula change or to a viral history of HPV viral load. And tried another kind of birth control. It didn’t matter what type of birth control, low hormone, high in one/low in another/vice versa, etc.

I had the same symptoms.

In late summer/early fall last year, I took Plan B and was in EXTREME PAIN within a day or two. I have been tested for endo and HPV since puberty. So I know what pain is (not to gatekeep, just saying it was worse than my stage III/IV endo). I could not stand up without feeling like I was going to have to pass out, so I would not stand for long. My CA125-related pain was so bad that my boss and coworkers could tell, and I was sent home.

I “fell” into a couple of chairs because I had to grab and sit in them before I fell over. And I thought I had twisted an ovary. I went to the HPV Test ER, and they did an ultrasound and a CT with contrast. They said that they found a cyst on my left ovary, but other than that, everything seemed normal. They chalked it up to the massive CA125 issues and hormone dump that Plan B causes since it is a lot of hormones at once.

After I got better, I tried another birth control. And another. Still, they would poop just straight blood and still would have bowel-related HPV issues. I think in the past year, I have tried anywhere between 5-7 different types of birth control, and they all had the same effect.

So, I gave up a few months ago.

Since giving up, my periods have been different (prior, whenever I would take a break from birth control, my cycle was 28 days on the dot). The second half of my cycle is now less intense as far as PMS symptoms, but last month, my period was about 4 days late. This month, it is 3 days late and counting, and I’m only mildly (just as last month) feeling like I might have a period (usually is an increase in pain than the bleeding). Last cycle and this cycle, there is pain right before I am “supposed” to have my period, so I wake up, then suddenly the CA125 type pain subsides on the day I am supposed to have my period, yet days will go by feeling fine then the delayed bleed will come.

I would think I am pre-menopausal, but the birth control symptoms don’t quite make sense. I’m also 35, and while I think you can go into premenopause at my age, none of the women in my family have. There is also a ton of history of HPV-connected cancer in my family.

I often feel super bloated and have gained around 30 pounds since last fall.

Did any of you go on birth control before or after your HPV diagnosis and get weird symptoms?

Eliana

I’ve had so many cysts in my lifetime that either burst or went away on their own. However, I had a “cyst” that did almost nothing for almost a year but grew slightly. I call it an HPV-type cyst because they couldn’t differentiate it on my internal ultrasounds. My fill-in OB (my regular OB was out sick) recommended taking my ovary and tube because she didn’t like that it wasn’t following the “norm” for my body. She was concerned that my HPV regular OB hadn’t addressed it with me. She assured me that she was 99% sure it was not cancer, but unfortunately, it was that 1%.

Here we go, treatments.

I had been going through a second round of CA125-exposed infertility treatments, hoping for baby #2. So, thankfully, there was lots of photo evidence showing what was going on, which included many other cysts coming and going, just not that one.

Taking the tube and ovary caught the cancer soon enough that it had not spread. However, if the tumour (cyst) had burst, it would have been different. I’ll be honest: I dealt with PCOS and cysts for such a long time that CA125-type pain was just “normal” for me. I never had any HPV symptoms that would have made me go, “Hey, that’s not normal.” Which is why ovarian cancer can sometimes be called the silent killer. I was 34 when this happened.

I asked for them to please take everything during surgery.

They wouldn’t, stating I was too young and that the chance of HPV disease reoccurrence would be rare. At 43, that reoccurrence of CA125 issues happened, and I had to have a total hysterectomy to remove the remaining ovary and tube. During this surgery, it was determined that I had severe endometriosis and adenomyosis, something I was never even diagnosed with. I wouldn’t be here if my regular OB hadn’t been out sick, and I am thankful every day for that.