The story of an annoying sac of liquid

by Suw on August 15, 2012

I’m back at my desk today for the first time since I had my grapefruit-sized ovarian cyst removed last Thursday. Although I’m not feeling particularly intelligent today, I am free from pain for the first time in months and I’m very happy with the speed of my recovery.

I thought it might be worth just recounting the full story, because in my search for information on ovarian cysts I got a lot of the same basic facts over and again, and lots of fora where women get together to discuss their experiences, but very little in the way of “this is what it was like for me”. I could have really done with reading someone else’s story of their ovarian cyst, if only to have some sort of frame of reference.

That said, if you find this blog post because you either suspect you have an ovarian cyst or because you’ve been diagnosed with one, please bear in mind that different people have different experiences. You might find that yours is radically different to mine, so don’t take anything here as medical advice or any sort of prediction. This is just my story.

It’s actually a story that I think started years ago. Now that the cyst is gone, I realise just how it made its presence felt. Looking back, I realise that it was there at least five years ago, if not longer. I can recognise a point at which my periods got heavier, longer and more painful. More recently, probably a year or so ago, I started getting minor spotting before and after. That was, I suspect, another warning sign.

Yet another long-term warning sign was the sensation that there was ‘something in the way’, something that seemed to move out of the way, but which had been there so long that it seemed just normal. It’s funny how we can convince ourselves that something which, when you spell it out like that sounds deserving of immediately medical investigation, can become just a part of normality.

But all those warning signs did become a part of normality. I ignored them, assumed that they were just a sign of getting a bit older. I even ignored a brief episode last year of hot and cold flushes, which may have been some sort of bug or may have been the cyst causing a temporary hormonal wobble.

I really was foolish not to go and get a check-up. Partly that was down to my ongoing irrational fear of doctors (long story), partly it was down to not really believing that anything was wrong and not wanting to waste anyone’s time.

If you have had any of the above symptoms and haven’t been to see a doctor, go now. You aren’t wasting anyone’s time and the doctor will be as happy as you are if it turns out to be nothing. But if it’s a cyst, or something else, you want to get it treated sooner rather than later.

So, fast forward to early January. That’s when symptoms really started to manifest, specifically I started to find that pretty much everything inside my pelvis had become tender. Going for a wee was just slightly painful. Sometimes going for a poo was the same. I ignored it again, or tried to.

Deep down, I was worrying a lot and wondering what the hell was going on. I didn’t tell anyone, I just fretted away to myself, lying in bed, wondering why having a wee sometimes felt so much like hard work. I didn’t even mention it to my husband, I just tried to rationalise it away. I can be a real idiot sometimes.

Because the tenderness came and went, though, I felt that the symptoms were too vague for me to take to a doctor. Again, that was stupid. Have I mentioned that I can be really very stupid at times? I can. Persistently.

Over the Easter long weekend in early April, however, I woke up in agony and Kevin and I went to the walk-in clinic at the local cottage hospital. They took a urine sample, diagnosed a mild urinary tract infection and gave me antibiotics. The end of that week we went to the US for a holiday, but the pain returned. I had had a urinary tract infection – the analysis of my urine was clear on that – but that was a side show. The main act had yet to reveal itself.

As the discomfort and pain increased, I realised that I was going to have to go and see my doctor, except I hadn’t actually got round to registering with one in the months we’d been in Woking. We managed to do that pretty quickly, thankfully, and I was given an appointment with a doctor who has a good reputation on gynaecological issues.

She took a look, had a poke about, and said that the only way to know what was going on was to do an ultrasound. She gave me a number to ring at the local hospital and sent me off.

Now, herewith a lesson for local hospitals: When you switch your lines on, don’t have an interim message that says “All appointments are full for today” in between the “Lines are closed” message and the point where people are actually answering the phones. I was calling at 8am, as lines were only open between 8am and 10am for appointments that day or the day after, and I kept getting this damnable message that all appointments were full. That wasn’t actually true. Only when I rang one day at 8.10am did I find out that there were plenty of appointments each day,  I’d just been served the wrong message because I was ringing a fraction too early.

The ultrasound easily picked up the cyst as the source of my problems. It was 8.0 x 8.5 x 9.5cm, sitting centrally in my pelvis and crushing my bladder into a boomerang shape. It was also crushing pretty much everything else that got in its way.

As cysts go, it was one of the better sort to have: a simple sac of fluid with no signs of any solid bits. They did a blood test for any cancer markers, just in case, but a simple cyst like this is very unlikely to be cancerous, I was told. The tests came back clear.

It was a huge, huge relief to know finally what was going on, and I wished I’d acted earlier. If I had, the wait that ensued then to get my op would have been much less unpleasant. As it was, I experienced a lot more pain than I would have. My poor bladder struggled to cope with my normal levels of tea drinking and I had to ensure that I didn’t ever let it get full because that was agony. I was waking every night in pain as the cyst settled on top of one organ or another, crushing it. Painkillers became essential every day, but they often left me feeling woozy and vague.

I didn’t have a particularly long wait, as waits go, but it really was an unpleasant time. I found it hard to focus on work and didn’t really want to go out. I didn’t dare drink alcohol as I never knew if I’d need painkillers later or not. I wasn’t able to go for more than about an hour or two without needing a wee, which is fine when working from home, but less good if you’re not near a loo. And I would be woken two or three times a night either from the need to pee or the pain.

I could have avoided all that if I’d just gone to the doctor in January. Or a few years ago.

The pre-op assessment was pretty easy going: Just a few questions about my health, allergies, and habits, another urine test and an MRSA swab to make sure that I wasn’t infected. (MRSA doesn’t just hang out in hospitals.)

In the end, the operation went off without a hitch. The surgeon told me that they would first insert a needle in through my belly button, inflate my abdomen with gas, then open up an incision in the same spot to send in the camera. Once that was there, they’d be able to see exactly which ovary my cyst was attached to, as that had not been clear in the ultrasound. As I expected given the relative pain, it was my left ovary.

They then made very small incisions along my bikini line both centrally and on the left, drained the fluid out of my cyst, then removed the sac itself. The operation scars are small, neat and tidy, and I’m healing well.

(Note, I might have the exact sequence of events wrong, so any gynaecologists who want to clarify the procedure, please be my guest in the comments and then I’ll update the post.)

The nurses, doctors, surgeons, everyone I met at St Peter’s in Chertsey were wonderful. They were kind, friendly and comforting. I was especially happy to see a nurse by my side in the recovery room as I came round. She stayed with me the whole time, watching my monitors and making sure that I was ok and although we didn’t exchange a single word, I was very grateful for her presence.

Coming round is, though, a strange experience. I had been told that there was a high likelihood that I would be able to go home that day, but I was very aware that time was ticking. There was actually a clock in my line of sight, and having been walked off to theatre about 3.15pm, I was surprise to see myself not waking up until 5.45pm (precisely).

I really fought for consciousness, because I didn’t want them to think that I wasn’t going to be well enough to go home. But that whole fluttery eyelids thing you see on TV? Yeah, did that. Once I had my eyes open, the next battle was to keep them open, and to start really getting a grip on consciousness instead of just idly batting it about like a cat with a dead mouse. Overall, that process took a full hour, and then there was a bit of a wait for someone to take me to the ward.

Kevin happened to call the ward just as I was being wheeled in, and was by my side within minutes, which was a relief. Then it was a case of waiting, both for more painkillers, although I felt pretty damn chirpy by 9pm, and for the various layers of nurses, junior doctors and senior doctors to come and see me and say if I was ready to go home. I was, and we left at about 10.30pm. It was glorious to sleep in my own bed!

Now, one of the odd things about abdominal operations, I was told by the surgeon, is that the nerves that serve your diaphragm also serve the tops of your shoulders and any irritation to your diaphragm can cause pain in your shoulders. My diaphragm did indeed get irritated, and oh boy, they were right about the pain! If I breathed wrong, it felt as if someone was trying to stab their way in through my shoulders. Painkillers helped, but I found myself regulating my breathing to reduce the pain. It worked. Mostly.

Thankfully, that was gone within 24 hours, though, and the rest of the pain has been very manageable and happily decreasing more each day to the point where today I feel almost none.

So there we are. I’m still recovering, though I’m very happy with the improvement over the last week. I spent this morning at my desk but suspect this afternoon might be spent napping and watching crap daytime TV from the sofa. I’m determined to take the advice I give everyone else when they are recuperating: Take it easy! There’s no point rushing a recovery, you only make it take longer overall.

And finally, if you’re in any doubt at all about whether to go and see a doctor about some vague and nebulous symptom, please, just go. Better to find it’s nothing than inflict unnecessary pain and anguish on yourself.

Julian Bond August 15, 2012 at 9:33 pm

Get well soon.

But mostly, #WeLoveTheNHS.

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