Category: Endometriosis

“While you’re unconscious…” | Pleasure Moans #2

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.

Me doing the period, pain and penetration maths

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?
Dr: Vagina
Me: With what?
Dr: What do you mean?
Me: What would stretch my vagina with?
Dr: My hands.
Me: ...
Me: And what’s that… procedure… called?
Dr: Oh it doesn’t have a name. It’s just part of ‘examination under anaesthesia.’
Me: …
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!

February 25, 2019
Gynaecological Whiplash #Periodically 15

I feel like I should start this blog with a “Previously on #Periodically…” but it might just be easier to read Periodically 10, 11 and 12 if you’re new. If you (understandably) can’t be bothered, here’s the gist: in August I had laparoscopic surgery to look for endometriosis, they found nothing but a regular (functional/ovulation) cyst on my right ovary and said there was “no gynaecological cause of pain”. While my belly button took some recovery meanders, I readied myself for my first doctors appointment since moving back to Essex and to look beyond gynaecology (towards bowels and bladder) to find a cause for my pelvic pain. Since then I’ve processed the news and the language issues I was worrying about in Articulating Pain – saying “dementors” instead of pelvic pain has stuck pretty firmly in my vocabulary.

I must confess, trying to find the words to articulate how confused I am at the moment is proving difficult. Every time I process one fact, something contradicts it and I’m in a new hole of confusion and disillusion. So bear with me.

October started with September’s late period and a whole load of nauseating, black-out pain. And it really surprised me. I was surprised because by linguistically and medically disassociating my pain from my menstrual cycle, I think I thought the gynaecological symptoms would disassociate themselves too. Foolish, of course, but that period was a bit of a wake up call.

Before my first GP appointment I had my symptom spiel ready, I’d checked that my discharge letter from Swansea had transferred and I was ready to start the process once again. Dr C, my new GP, listened to my symptoms, felt my abdomen, read the “no gynaecological cause of pain” letter, then turned to me and said “I am not convinced”. Excuse me? “I am not convinced that it is not gynaecological. You don’t experience painful periods or painful sex unless there is a gynaecological problem”. He ordered an ultrasound and some blood tests and said he would refer me to a gynaecologist.

I was pissed off. I’d been jokingly forecasting that the doctor was going to refer me to a gyane in this appointment for weeks but I had been joking. I was mad, and my general attitude was “it has taken me 12 months to get to where I am now (which is nowhere) and now we’re going to start all over again from the same place”. Basically, I sulked for a fortnight. Until…

This week, I headed to the ultrasound with my mum, confused as to why they hadn’t told me to drink a litre of water like last time. The reason I didn’t need any water was because it happened to be an internal ultrasound. Now they had my attention – I’d be moaning for months that it seemed strange to me that I’d never had one of these. While Dr T, who carried out the ultrasound, and the chaperone described the device as a “wet tampon”, I would describe it as a very solid USB dildo that’s plugged into a computer being watched by two doctors and your mum. To my surprise, it hurt almost as much as sex and has left me in the same horrible post-sex pain, but perhaps we now know why.

I can’t believe I’m writing this. I have a cyst! Two actually, on my right ovary. Yep, what the fuck? Sorry I can’t be more eloquent about this but I am so beyond confused and conflicted at this point that the words in sentence putting is falling out of nick. (What?) One is a small 2cm functional cyst – potentially an ovulation cyst but where I was in my cycle would suggest otherwise. The other cyst however is over 4cm and looks like an hemorrhagic cyst, meaning it has been bled into, which is, get this, potentially an endometrioma or endometrioid cyst. Hmm, those words sound familiar, don’t they?

Once I had my nickers back on my mum and I expressed our shock upon this discovery to Dr T, explaining the fruitless laparoscopy results just two months earlier. Dr T said: “what and the laparoscopy didn’t find any endometriosis? That’s funny because all your symptoms point towards that”. We all laughed and I went home with the promise that we’ll check to see if the cyst is still there and whether it has grown in six weeks.

I say laugh but I mean a sort of hysterical confusion and shock induced gurgle. Now, to answer some question my friends have hit me with since the Great Cyst Discovery of October ’17:

What does this mean? I don’t know.
Why didn’t they find it in the surgery? I don’t know. It’s possible that it wasn’t there, or that cysts have come and gone and during the lap things just happened to be clear.
Is this PCOS? I don’t know.
Is this endometriosis? I don’t know.
Will they take it out? I don’t know – seems unlikely given my favourite sentence “sometimes you just have to live with it” was uttered during this appointment.
If they do, would you want to go through surgery (belly button nightmares) all over again? I don’t know.
Did they actually do anything in the laparoscopy or did they just cut you open, have a cup of tea and then stitch you up (badly)? Maybe. No. A lot of my frustration earlier this week was directed at the surgeons in Swansea, but I know that’s unfair. They knew what they were doing, things must’ve been clear in August. Or maybe the functional cyst they saw was not as functional as they thought.

I don’t know whether to be mad, happy or upset – I am just very confused. I guess I can say “ovulation pain” rather than “dementors with knives” again now? Plus there’s the fact the whiplash might continue if in six weeks the cyst has disappeared without a trace. I almost begin to get that fuzzy “I’m not imagining it all!” feeling, before I begin to wonder if I imagined the whole surgery in the first place.

So things are once again painfully up in the air, but for now I am just grateful that despite my obvious doubt, Dr C listened to his gut.

A bit lost? Don’t blame you. Find the rest of the #Periodically blogs here. Or if it’s a little too TMI for you, I blog about books too here and, finally, last week’s blog can be found here.

October 25, 2017
Recovery & do I Regret Having the Laparoscopy? #Periodically 12

I am now over three weeks post-laparoscopy. I’ve started working, from home happily, and I could be doing a lot worse. But for the sake of record, I thought I better write about how everything’s healing up.

Badly, is the answer.

In my blog about the surgery itself I included this picture of my stomach’s ‘transformation’.

Unfortunately, I think shared my before and after photos a little prematurely. Ten days after the surgery my belly button, for want of a less disgusting word, exploded. Quite literally. But it was a bank holiday weekend and we were on the way to a party, so I slapped on a plaster and carried on. Towards the end of the party my belly button was so incredibly itchy, and as I changed the plaster I discovered the explosion had continued. Hoping it would go away I stuck another plaster on and continued with my life.

I’ll spare you the close up, the live show made my sister gag, #sexy, but here’s how much worse it is from two days post-op.

The Tuesday after the bank holiday I decided it was looking too suspicious and so I went to see a nurse at my new/old GP. She poked it a bit and said it wasn’t infected, covered it with an iodine gauze and said don’t shower or take the plaster off until I see you on Friday.

Friday rolls around slowly with a lot of itching, moaning and stinging. When the nurse and the doctor remove the plaster, hoping to see a nice, dried up wound, they instead find three blisters where the lower half of the wound had been. ‘Huh, I’ve never seen that before’ is yet another thing I had never hoped to hear about my body.

Still not convinced that this new mass growing out of me, like something from Alien, was infected, the doctor umed and ahed before saying ‘it’s the weekend – give her some antibiotics’. So the weekend went by with me being pumped full of penicillin, taking awkward half body showers, all while the delightful wound continued to blister and get redder and angrier.

Another Tuesday later I’m back at the doctors being inspected and prodded. Still not thinking its infected, the doctor concluded it must be some sort of ‘skin reaction’ and so then I was prescribed Fucidin H (an antibiotic + steroid combo) to rub on this, the world’s most disgusting wound. During this appointment the doctor asked about my pain and pushed on my abdomen. Since my files haven’t correctly transferred from Swansea, trying to explain ‘yes it hurts but it often hurts anyway’ was a little longwinded.

As I write this I’ve returned from the doctors again where this time two doctors had a gander. It looks like I have hyperkeratosis, meaning that the skin is out overgrowing itself. The result is that I might have a bit more of a scar than expected.

SO THE PHYSICAL RECOVERY IS GOING GREAT. Anything too strenuous still hurts, jumping and such, and long walks conjure up some stomach pain on top of the preexisting pelvic pain so that’s nice. Meanwhile the other wound is acting quite proper and is healing up nicely. An actual nice surprise was that my cycle hasn’t been effected by the surgery at all. My period came rather promptly and behaved fairly normally.

Given the increasingly bizarre situation of my belly button my mum said to me the other day ‘I wish you’d never had this laparoscopy’. I’ve been mulling that sentence over for a few days now. Do I regret having the surgery? After all, it didn’t find the cause of my pain and it has temporarily deformed and possibly permanently scared my abdomen.

I can’t bring myself to regret having the surgery. Firstly, it was never really a choice. I was handed from doctor to doctor and they said ‘hey next step is surgery’ and I said ‘hey OK’. It was never an active decision, it was medical practice and advice. Every single one of my symptoms points, or pointed, towards my reproductive health. Checking my uterus out surgically when an ultrasound had displayed nothing, was the next logical step. In fact at that point in time, it was the only step. Now that we know my reproductive health is in tip top condition, we can re-giggle my symptoms and look at my body in a ‘well we know it’s not that so could it be…’ kind of way. The final reason is that to wish I’d never had the surgery achieves literally nothing. I’ve had it, it happened, we know what we know. I wish I knew more, but I don’t BUT I will. Of course it’s frustrating, but powering on is the only fruitful attitude to have.

Besides, no one ever really saw my belly button anyway – I’ve never been one for crop tops.

September 11, 2017