What’s Going on? A (Not So Little) Health Update

For the last twelve years, I have had regular check-ups on my ovaries and the surrounding area. Every three months I have to go for an internal ultrasound (or transvaginal ultrasound), get a blood test and then see my consultant a couple of weeks later.

You can read the full back-story in this post but I’ll briefly explain it here too. When I was 22 I started getting really bad pains in my stomach area, and for a while, I just kept getting told by my doctor at University that I had a water infection. Eventually, I threw up one night and was in agony so I took myself to hospital where lots of tests were done. A scan showed I had a cyst that had burst and so I needed an operation back at home in Nottingham to remove it.

The operation which was supposed to take around twenty minutes, actually took around six hours and when I woke up I discovered that my right ovary and tube had been removed (a Unilateral Salpingo-oophorectomy, if you will) due to a Borderline Ovarian Tumour, as well as a small part of my left ovary.

My fertility wasn’t thought to be likely to be affected as I still had one functioning ovary, but I did go on to struggle to get pregnant for four years and ended up having two rounds of IVF to have my daughter. It may have had nothing to do with it, or it could have, we’ll never know. However I did go on to get pregnant naturally for the first time two years ago, but that pregnancy very sadly ended in a miscarriage.

For the last couple of years or so my CA125 levels (a tumour marker) have been going up for the first time since I had the tumour removed. I won’t go into too much detail, but they have gone up from consistently being less than 20, to in the 80’s for the last year. I have also had multiple cysts on my ovary that have been slowly increasing in size.

For years my consultants have wanted me to have completion surgery (so everything removed – ovary, tube, womb) so that any risk of ovarian cancer is gone. But as I have wanted to have more children, they have been (relatively) happy with carrying on with me having check-ups regularly and monitoring my levels of CA125 with blood tests.

I didn’t want to not be able to have any more children as I would really love some more, I didn’t want to go through another big operation and the recovery, and I didn’t want to go through the menopause at such a young age (I’m almost 35 – not that young, I know, but young for the menopause).

So, back to now. I had my usual scan and blood test a couple of weeks ago and on Thursday afternoon I had my consultant appointment. I am used to these appointments and they don’t usually worry me too much, but this time I was much more worried. I’d been getting strong pains for the week or so before my consultant appointment, and my sonographer had mentioned seeing a blood flow in my largest cyst, which I knew I’d had before but it had never been mentioned at a scan.

At this point I feel like I am possibly going into too much detail, but it always helps me to write it down to get it straight in my head – plus it helps me explain it to the people in my life who care about me, without writing them all an essay on WhatsApp!

Anyway, so I was nervous going in anyway, and I was right to be. My blood levels have now gone up to 94 which is the highest they have been since my operation. They’re still not in the properly scary levels, but alongside everything else, it’s not great.

I now have a fourth cyst, and two of the others have grown, the largest is now at 7cm. Funnily enough, my brilliant consultant told me that research suggests that symptoms usually start to show above 7cm, and so it would make sense that I had started to get pains.

He also thinks that the blood flow looks worse which is a bad sign, and there is now a blood flow in two of the cysts. It all just doesn’t look very good and it’s getting riskier not having my ovary removed. They can’t operate to just have a look because if it is cancer (and it seems quite likely) then it could leak out and spread.

So what happens now?

I had another blood test at my appointment on Thursday and I am having an MRI scan this week to see if there is any healthy ovary left at all.

If there is then there is a possible fertility treatment I could have to remove the section of healthy ovary and freeze it so that it could be reimplanted at a later date and be stimulated to produce eggs so that I could potentially get pregnant. It is a relatively new treatment and so it is only carried out in Oxford at the moment (I’ve never been to Oxford and I’d really like to – so that’s one positive to all this at least!!).

The idea of that absolutely blows my mind. I’ve read a little bit about it and apparently they remove the ovary and then slice it up to freeze it and a section could later be reimplanted back into the body. Isn’t that absolutely crazy?! The human body and science and medicine are insane.

That is all only possible though if I have any healthy tissue left at all and my consultant isn’t sure that there will be any. So now we will do the MRI scan and see what it shows and see whether the Professor who is a part of the fertility department thinks it is safe to do. But they wouldn’t want to risk that if it could mean cancer could then be spread around my body.

Either way now it seems like the time has come to remove my remaining ovary and tube. Unless the MRI scan shows that it isn’t as bad as we thought, I don’t think I could risk not having surgery now and worrying constantly that I have ovarian cancer or even that it has spread elsewhere.

I think the time has come to accept that I will be having my ovary and tube removed this year, and for now I just have to hope for the best and hope that there is some healthy ovary left so that there is the potential for fertility treatment, and that there is enough time to do it before we are at the point when it all just needs to be out of me as quickly as possible.

It is a possibility that I would be able to keep my womb so that I could still carry a baby, but only if all of the bad stuff is contained within my ovary. Either way, removing my ovary would mean that I would go through the menopause, which, I’m not gonna lie, scares the hell out of me. I’m not ready to go through all of that yet, I’m really not.

But that’s not as scary as cancer spreading through my body and having to have chemotherapy and all that entails, and fighting for my life.

I’m getting more and more pains now and I’m scared. I’m scared that I’ve already left it too late and the cancer could already be elsewhere in my body. I’m scared that I won’t get to see my daughter grow up.

I’m scared that I’ll never get to have any more children.

I’m scared of dealing with it all; of going through the operation and not being able to see my daughter enough, of not being able to look after her by myself afterwards, of not ever giving her the brother or sister she so desperately wants.

I’m scared of going through the menopause at 35 and all that that entails. I’m scared of having another operation and being put to sleep. I’m scared of not being able to cope with all of this on top of everything else that is going on in my life currently. I’m scared of not being able to exercise for a while when I have just started to feel a bit better about myself, which is very superficial of me but my confidence affects my whole life and I’m enjoying feeling stronger and more toned, so it worries me losing that again.

I’m scared of it all. Actually, I’m fucking terrified.

But my life and being around for my daughter are the most important things and I don’t think I can put all of this off any longer.

I am trying to take it all one step at a time and deal with each bit as it comes, which is hard and I’m so overwhelmed with it all at the moment and even though I have plenty of people who love me around me, I feel so alone.

But this is just life isn’t it? We go through shit times and we keep fighting and dealing with it all and we come out the other side stronger. Things could be much, much worse and I already have my daughter so I have everything I need in the world.

So, MRI scan this week and a consultant appointment after that and then we’ll know more about where we are.

One step at a time.