Good news, bad news & speculation #Periodically 10

Know that feeling of relief when you worry about a worst case scenario but when push comes to shove everything is OK? I do, I had it for about half an hour after my surgery, but that was all.

Last week my lovely mum managed to get me to Swansea, operated on and back to Essex in 27 hours. It was my last rendez-vous with the Welsh NHS system (that I already miss) and it was a diagnostic laparoscopy – keyhole surgery to look for signs of endometriosis on my uterus. My biggest fear, as I discussed last week, was that the doctors would tell me that there was ‘nothing’ wrong.

We arrived at the hospital bright and early at 7:30am and they promptly told me I was first on the list of two – thank you summer holidays! I was actually relieved to find myself in pain on this particular morning. By my logic, if it was causing me pain then they would be able to see whatever was causing it in action. My anaesthetist Dr G and his student came to see me first – they were super friendly and informative throughout the whole day. Then Dr M’s registrar, so my second gynae, who I hadn’t met before showed up and we rewrote my consent form and ran through what was going to happen. They would go in for a look, if there was nothing I would only have the one incision, if there was anything wrong it could be up to four. Then I got to see Dr M who would be performing the laparoscopy. He is not a man of many words, our second and final meeting was brief.

Gowned, naked and exposed I was wheeled down to the prep room where people stuck various things to me and in me while asking what I write about – “female health, actually!” Dr G was hosting an A level student and so everything was explained above me as they administered painkillers and then anaesthetic to my cannula, before Dr G said “see you in half an hour – or an hour if we find anything! Think of nice dreams now and you’ll wake up to nice things’.

‘OK’ I thought, ‘I’ll dream of a diagnosis…’

Opening my eyes in recovery I immediately clocked (literally) that it had been over an hour. First shot of relief. The nurse was asking me questions but I had zero interest in them so I immediately asked ‘how many holes?’ Understandably confused she asked what I meant, to which I very eloquently clarified ‘how many pokey holes?’ while pointing at my belly. She lifted my blanket and gown and confirmed, ‘two pokey holes’. Second shot of relief. ‘Looks like you’ve had a couple of cysts removed, love’ were her next words. TWELVE SHOTS OF RELIEF.

Cysts! I can handle cysts. I’ve tested negative for polycystic ovaries so if it’s just a couple of cysts that might rectify everything. This was the best case scenario! Hurrah! Contented with relief I now answered her actual questions. Yes, I did feel sick, but only because I’d had a breathing aid down my throat. Yes, I would like some pain relief. No, I didn’t have a headache. She then handed me and my file to my ward manager Viv with the words ‘she’s had a cyst removed’. Hmm, ‘cyst’ singular this time. First shot of doubt.

Wheeled back to my mum I said ‘cyst! Or cysts! I’m not sure’. Then it was my mums turn for relief, she also knew that in this case no news was not necessarily good news. She called my dad and let my sisters know what was going on while we waited for the gynaes to come and talk to us. I was in a fair bit of pain at this point, but it seemed, it was worth it. And then in marched the gynaecological registrar, no Dr M. I smiled at him, waiting for confirmation that I wasn’t insane. ‘So the surgery all went well, we didn’t find any endometriosis. There was a 2cm cyst but obviously that’s just a normal ovulation cyst. So yeah, good news really because nothing’s wrong, bad news because we don’t know what’s causing your pain’.

Oh.

So I didn’t have any cysts removed. But I did have a cyst, an ovulation cyst. I’m ovulating. I could’ve bloody told them that from Clue which had already notified me of that very fact. I just frowned at my mum while she asked actual questions. I was, am, gutted. ‘Whatever it is, it’s not gynaecological,’ he informed us. Apparently, after everything, my uterus is a ‘nice and healthy looking uterus’. Even my ovaries are in the right place.

Worried about my risk of clots on the drive back to Essex, Dr G ordered a blood thinner, but otherwise, a few more painkillers and lunch and we were on the road by 2pm. I love lasagne and rice pudding, but they only marginally cheered me up.

A few days on, I’ve had time to process and I am realising how grateful I should be that whatever the problem is, it doesn’t lie in my reproductive health. Maybe whatever is wrong will be more treatable than the unknown entity of endo. But I am equally disillusioned with the idea of having to start this entire process all over again, in Essex of all places where GP appointments are much harder to come by than in Swansea. #ToryBritain.

It is difficult to go through such an invasive procedure and to be none the wiser afterwards. Endometriosis needs an easier diagnosis method. I knew that before, but if there had been a less invasive way to rule endo out of the equation, it would have saved a lot of heartache. Not receiving a diagnosis initially felt like I needed to just bounce back, having wasted everyone’s time. But I have had two pokey holes poked, and the hope being taken as quickly as it was given has left me with a bit of emotional whiplash. Besides, the surgery didn’t reveal nothing. I know now that this pain isn’t gynaecological and that my reproductive health is in fact, healthy – though it would be nice if I could actually use it. What pain I do have is calmed down by paracetamol but is noticeably worse in the evenings.

Physical recovery wise, I’m starting to feel good. I’m sleepy, moany and achey but I’m walking around and irritating my family with little hindrance. During a diagnostic laparoscopy they fill your abdomen up with carbon dioxide, which has left for some interesting bloating. The wounds are seemingly healing well but the area is very sore and my belly button no longer looks like my belly button. It looks a bit like they’ve untied it and then retied it differently. I’ve had some vaginal bleeding but nothing major. I was shocked back into sanitary towel usage when I discovered a pad literally wedged between my legs after surgery. They assure me tampons and cups will be fine to use for my next period though.

Chances are, if it’s not my womb then it’s probably my bladder or bowel. Already, my right side, where most of my ‘period/ovulation’ pain is focussed, has swollen and is much more painful than the left following the surgery, meaning I’m still very suspicious of the area. I daren’t speculate, especially since the registrar, who made a point of saying he would not speculate, proceeded to speculate far enough to suggest I might need to go gluten-free (The horror!) I have had a plethora of bladder issues from the age of two till eleven, that restarted around the age of eighteen, so I think we will first explore the bladder.

What for this blog then, you ask? Well I think things are likely to get less menstrual (though who are we kidding, probably not). Whatever the problem is, it is either worsening or being worsened by my menstrual cycle so I don’t think we’re done there. But while we wait for hospitals, doctors, practices and two countries to sort their shit out transferring and referring me, I think it’s likely that these blogs might begin to take up the other meaning of Periodically – in that they will occur from time to time.

Thank you everyone for the well wishes over the past couple of weeks. Even if it’s reluctant, I’m looking forward to exploring yet another part of my body in the hope of a future with a bit less pain.