There I was, sitting in the waiting room of my community hospital trying to read Papillion. I say trying because I was very distracted. It was my last week of term, I was, as I made clear in my last post, absolutely pooped. But more distracting than any of the assignments, deadlines and very real desire to finish Papillion was my concern for what was going to happen when I saw the gynaecologist.
As discussed in the last blog, the impending appointment pushed me to take action for the first time in a few months. But until the night before I hadn’t actually given the appointment itself much thought. True to form, once I did I completely freaked myself out. Doing all the period, pain and penetration maths in my head I had come to the conclusion that my gynaecologist was going to want to do another diagnostic laparoscopy – keyhole surgery to look for endometriosis.
How had I come to this conclusion? Because that’s the only other thing my local NHS has to offer, other than antidepressants, which I tried but weren’t for me. But also because since I started with this new gynae he hadn’t been convinced by the laparoscopy I had in Swansea back in 2017, but from what I could understand, the only reason for doubt was that he hadn’t performed it himself.
Anyway, I was right. But not for the reasons I’d anticipated. He suggested antidepressants again, which I declined. So then he suggested something I didn’t even know was a thing. He wanted to examine me under anesthesia, since it’s hard to really get a good look at my innards with so much pain kicking about. And then… well, then this conversation happened:
Dr: So when I do the examination under anaesthesia, I can stretch the vagina and see if that helps.
Me: Sorry, stretch my what?
Me: With what?
Dr: What do you mean?
Me: What would stretch my vagina with?
Dr: My hands.
Me: And what’s that… procedure… called?
Dr: Oh it doesn’t have a name. It’s just part of ‘examination under anaesthesia.’
Dr: And while you’re unconscious we might as well do another laparoscopy just to have a look around.
The more I think about this conversation the funnier/more ridiculous it seems. I was flabbergasted but this is the coolest and most collected I’ve ever been in an appointment like this, I asked loads of follow up questions, aired my doubts and concerns and he heard them all out and answered them as best he could. Many of my concerns were, are even, small little things, but when I look at the bigger picture holistically, these things add up. For example, the irony is not lost on me that in the process of trying to have pain free sex I’ve made myself feel incredibly unsexy – a resurgence of acne, surgical wounds that scarred weirdly, taking a drug that in the past has reduced my libido but in the present has given me erratic mood swings that I have to actively intervene to control. All pretty minor things, but when I consider what the point of all this is, which hasn’t been reached, I have to ask myself what price I’m willing to pay to get answers. My belly button’s starting to look normal again, do I really want to start from the beginning again?
The other thing, that’s slightly bigger, is that having diagnostic surgery and not getting a diagnosis is a very surreal and difficult thing to process. Surgery and the recovery from it are painful – which is just so frustrating when it hasn’t done anything to help the underlying pain. I’ve tried and failed several times on the #Periodically blogs, but it’s a really difficult thing to articulate. You cause yourself additional pain and duress only to be told ‘there’s nothing wrong.’ That’s not a feeling I enjoy remembering and I don’t particularly want to experience it again.
If I’m going to have another laparoscopy, I need a better reason that already being unconscious.
But, this is the NHS in 2019 so if I say no and then find a better reason then in all likelihood it would take me a year to get to this point again. So I’m on the waiting list, mulling it over, very aware and reassured that I can withdraw my name from the waiting list at any point.
I’ve sought counsel from just about everyone on this. Friends, family, my GP, support groups, random strangers on the Internet, academics and a brill gynaecologist I have the good fortune of knowing (thank you!) And all of their concerns echoed mine – there’s got to be a better reason to do another laparoscopy. I should also add, there were lots of raised eyebrows about the idea of having my vagina stretched. Worryingly, I can’t find any information about this having been done to anyone else, and given I apparently have a certain psychosexual vulnerability, it sounds like a stretching might do more harm than good.
So I’m in the process of trying to get a second opinion from a London gynaecologist, which, while possible, is proving to be more complicated than me and my GP first thought. London hospitals are more likely to do more detailed/thorough scans (MRIs & ultrasounds by gyanes rather than radiologists) to check if there are any signs of endometriosis before surgical intervention. Unfortunately the wires have been crossed in my referral letter and I’ve been referred to a vulvology specialist, which is not what I want at all, but my doctor’s surgery have submitted the referral despite my protests and have said I have to talk to my GP if I want to alter it, which is fine, except my GP is booked up for the next month, meaning the referral I don’t want is likely to be processed in that time. It’s just a massive waste of time and money for everyone which is the last thing I want to do. As always, the admin side of this is really hard work and puts irritating little voices in your head that ask ‘is this stress really worth it?’ The jury’s still out.
I did not think we would be back at the ‘e‘ word, and I’m nervous about going down that path again. But November’s news that a special NHS report had found that there was ‘a demonstrable lack of understanding’ of endometriosis among Welsh health care providers (I had my first lap in Wales) has made me wonder whether double checking is a good idea after all.
I change my mind every day about what I would do if my gynae’s office called me and told me I could have the laparoscopy tomorrow. Today I would say no, but ask me when I’m in more pain and I might say yes.
Since I might be going back down the endometriosis route, you might be wondering why I decided to move this story over into Pleasure Moans and away from Periodically. I’ve been thinking a lot, academically and personally, about the interrelation and separation of sexual and reproductive health lately. This ‘situation’ is obviously both. But it’s also not. I am very aware that to get help faster I only have to rephrase what I’m saying to my doctors about my sexual health to make it about my reproductive health. My aims are to be able to have and enjoy sex again and to be in less pain day-to-day. In my current reality, this has very little to do with reproduction. For others, it’s a totally different situation with the same symptoms and goals. Plus, it may be that this is easier to say now that I’ve settled some of my menstrual issues. It’s complicated stuff, but the way we talk about it makes a huge difference to patient experience, and so this is how I’m choosing to tell this part of my story from now and for now.
Thank you for all the encouragement about making this change. It’s been on my mind for a while and I’m feeling good about it!