Tuesday I had my 'consultation' with my gynecology specialist. After waiting over an hour over my actual appointment time I was called. (Hey it's the NHS) Only it wasn't him, it turned out to be some (i'm presuming) trainee consultant acting on his behalf even though I had seen him actually in his clinic.
So first of all I was a little bewildered as to why I had another random person to speak to. He seemed friendly enough although he was foreign and had quite a strong accent so I struggled to understand him for most of the actual appointment.
I had to (as usual) explain everything from the start going back 10 years, explaining all my symptoms, surgeries and everything up until now. First annoyance was when I told him I had been diagnosed with Polycystic Ovarian Syndrome several years ago to which his response was " just because you have the cysts on your ovaries doesn't mean you have the syndrome" So straight away I was pretty taken back. I'm a million % certain I have PCOS as it was both diagnosed by laparoscopy and also by my GP as for years I had suffered with severe acne, weight gain, hirutism (excessive hair growth) heavy and painful periods and so on. I'd atually love it if it was simply the cysts on my ovaries and not the latter. That would of been fabulous. I brushed it off anyway after telling him that I had been diagnosed and also had the syndrome for years.
I was asked to rate my pelvic pain on a scale of 1-10 on a daily basis, not in relation to menstruating, and I gave a 9 and then I was asked to rate it based on the time of menstruating and gave a 10. He scribbled all this down. I tried to tell him calmly ( holding back tears) just how much of a dominant effect my pain has on my life at the moment; that it makes going to the toilet excruiating, sex is a distant notion far away on a horizon because i'd prefer to be bludgeoned to death that experience the amount of pain it induces. I told him the fatigue and pain was mind-numbing and it had had a strong impact on studying for my degree and my quality of life in general.
After listening to me he scribbled a little more only to excuse himself to "consult" with my actual gynecologist. He came back almost 5 minutes later with a little encyclopedia of medicines and their uses. I saw him instantly flip to the z's. I knew straight away he was going to suggest zoladex. I tried again rather pathetically (at this point feeling really disheartened) to tell him that I was reluctant to try tablets again for months on end in the hope that it might make a difference. I'd prefer surgery because it's more pro-active and actually makes a difference in regards to the pain I feel. (I was about 4 months pain free after my last surgery) He gave me a dubious look and began the "not advising surgery speech" because if they can- they'd rather fob you off on medication that doesn't help instead. It was at this point I burst into tears and told him I couldn't possibly entertain the idea of another 6 weeks with this pain nevermind 6 months.
Again he got up to go and "consult" with my consultant.
After about 10 minutes he came back again and sat down with his little book and then said I should try microgynon.
It was at this point I wanted to both sob hysterically and grab his shoulders and shake him violently.
I'VE BEEN ON A COMBINED CONTRACEPTIVE PILL FOR 9 FUCKING YEARS.
And if anything- it's done absolutely NOTHING.
I just kind of sat there exasperated whilst he launched into his medical babble about my actual gynecologist trying to avoid surgery.
It was at this point that he said something that was an absolute mind-fuck. I'd spent most of the appointment trying to guess what he'd been saying or asking him to repeat himself or the question he was asking. I'd taken in my boyfriend ( I don't usually like taking anyone close to me into my appointments as I usually try to hide how bad I feel from them, that and it's super personal) and he said something along the lines of "the surgery didn't show/find any endometriosis" or thats what my boyfriend claims he said. I couldn't understand anything at this point as I was just trying to wipe my tears and not bawl like a lunatic. He excused himself AGAIN, to go and speak to my consultant and came back afterwards saying that they would put me for surgery if that's what I wanted.
During the time he was gone, my boyfriend turned to me and said- "what's he on about when he said about the surgery not showing endometriosis", instantly I was like.... "is that what he said?" I was completely and utterly baffled and convinced he'd said something along those lines but not actually that, am I going fucking mad?
After my last laparoscopy to diagnose and remove endometriosis 18 months ago, I was told both directly after my surgery I DID have endometriosis and also at my 6 week follow up appointment with my actual gynecologist (i'd taken my mum) he'd explained I did have endometriosis- showed me the surgery photographs of where it was found and removed (around my left ovary and the back of my womb) and told me that it was classed as a moderate case. You can imagine I was so relieved back then as I'd gotten a diagnosis and also a treatment.
Had I imagined all of this? Of course not. Where the fuck was this man getting his information from? He had kept looking at some documents he had up on the screen that I couldn't see for the life of me because I hadn't got my reading glasses on. After a quick physical examination and being given a surgery information handout and quickly ushererd out, I left absolutely confused as to what he'd said. I know I should of instantly queried it whilst I was there, but as I'd not properly heard what he had said I'd carried on talking about the next surgery. The past few days it's bugged me beyond belief. To the point where I've even been checking my medical notes and files which all have 'endometriosis' on them and explain that I had a diagnostic laparoscopy and the removal of endometriosis so what on earth. I've spent the past 2 days just completely baffled. If i'd been diagnosed how on earth could it be that this man was telling me that it hadn't been found? What on earth was going on? Had he got confused? Am i a raving lunatic who has imagined the whole thing? Or did he simply mean something else or was he talking about the surgery in the future that may not find any?
I'm so utterly confused and upset and just generally stressed as to why he said that- where he had his information from, why had i been told something different?
At this point I'm waiting for a date for my next surgery, but am unsure as to how I can actually check what had been said without having to have an appointment.
I don't know if anything similar has happened to anyone else but I'm now a very paranoid and confused lady. The NHS never fail to be a complete mind-fuck.
This is where I'm at now. I don't know if it's pointless to try to call his secretary as I have no idea if they can relay any information like that to me.
I'm just so totally confused.
It's things like this that really make me doubt the NHS.
Not only can they not even give you an appointment with your actual specialist despite waiting months and months just for the apppointment but then you get told completely conflicting information about the conditions you have.
Has anyone else experienced this?