Tag: rectovaginal endometriosis

  • ‘Endometriosis is not the endometrium’ – and repeat!

    ‘Endometriosis is not the endometrium’ – and repeat!

    A few months ago I received a message from Sarah, also known as MyPelvicPain on Instagram. Sarah had found my blog and we briefly discussed the commonalities of our experiences with pelvic pain, and when I followed her back I began to see just how many there were. If you follow Sarah, you’ll know she repeats one message more than others in her advocacy work – ‘endometriosis is not the endometrium’.

    Endometriosis is a condition that mystifies many doctors, let alone patients and their friends and family, and one of the most common misunderstandings is that it is the endometrium – the lining of the womb. In reality, endometriosis is a tissue a bit like the endometrium, except it is found outside of the womb – such as on the bladder, bowel, appendix, even in the chest cavity – and it behaves differently. These patches of endometriosis are known as lesions. It’s different still from adenomyosis, which is when the literal endometrium grows in the muscle wall of the womb. To complicate things further, ‘endometriomas’ are different again – also known as chocolate cysts, they are ovarian cysts filled with old blood. It is all so complicated and making the facts simple and communicable is a super important task. Yet for a few months, I kept wondering why the message ‘endometriosis is not the endometrium’ was appearing so often on my feed. Why did this message, which I knew to be accurate but understood why it was regularly misunderstood, need such constant reinforcement?

    In the end, of course, it was my own health that led me to finally clock the importance of knowing this vital distinction. By finally accepting it into the core of my understanding of the condition, it opened up a whole new appreciation for why traditional ‘treatments’ keep failing me (and so many others). The prescription I received three years ago for Mefanamic Acid to lighten menstrual bleeding didn’t work as the problem wasn’t menstrual bleeding, because endometriosis is not the endometrium. My surgeon, an expert in endometrial ablation, burning off the small lesions of endometriosis he could see didn’t work because endometriosis is not the endometrium, it doesn’t respond in the same way as the endometrium. Fitting a Mirena coil hasn’t greatly improved my pain because thinning the endometrium isn’t much help when endometriosis is not the endometrium. Some months after I got the Mirena coil and stopped having menstrual bleeds, I started bleeding from somewhere new – my rectum. I thought it couldn’t be endometriosis because the coil had thinned my endometrium so much that I wasn’t menstruating anymore, surely the same applied to the lesions of endometriosis? No, my GP indicated, because endometriosis is not the endometrium.

    Your entire perspective shifts once you fundamentally understand that endometriosis is not the endometrium, we are dealing with something far more sinister. And much like the condition itself, our knowledge of it is only just beginning to scrape the surface.

    Every day I learn something new about the condition, and my body, thanks to so many patients and doctors sharing their stories and research online. It’s these conversations that make such a difference to the patient experience. For that I am eternally grateful to Sarah and other advocates like her for educating and enlightening me every single day!

    Thanks to this great glossary of Endometriosis terminology for helping me make sure this blog is as accurate as possible. Some other great accounts to follow include endogirlsblog, endo_black, endosocialworker and endoqueer.

    It’s been a fairly frantic August so far – personally I turned 25 and became an aunt on the same day! There has also been a lot of heartache that could do with your support. If you can, please donate to the disaster relief in Lebanon – find a comprehensive list of charities that need support here; use this resource to complain about the dehumanising coverage of refugees arriving in the UK; and sign this petition about the incredibly unfair downgrading of exam results in the UK due to an elitist and unfair systemic response to the challenges posed by the pandemic. Finally, a reminder that I am currently raising money for Endometriosis UK by taking part in the #WalkForEndo – learn more and sponsor me here.

  • New hope: I got a coil #Periodically 34

    New hope: I got a coil #Periodically 34

    See, I told you I wasn’t abandoning the #Periodically blogs for Pleasure Moans. I’m back here because despite the pill, the endometriosis diagnosis and pelvic physio my pain is still interrupting my daily life and even recently made me pass out while watching a performance of Henry IV Part One, so I desperately need a more long-term, semi-permanent solution, or at least an attempt at a solution, that doesn’t immediately involve more surgery. So, I’ve had a Mirena coil/IUS installed in my uterus.

    Image result for mirena coil gif

    I’ve spent a lot of time on the #Periodically blogs discussing my complicated feelings towards hormonal contraception – the broader culture of those discussions is actually the subject of my masters dissertation. Even though the process from second surgery to coil insertion was pretty quick (about three months), it was not a decision I took lightly. Yet my feelings remain much the same as when I wrote about going back on the pill, in that I am deliberately trying to mess with my cycle to improve my pain.

    Anyway. Before the surgery I was already coming around to the idea of having a Mirena coil fitted in the event that endometriosis was found. A Mirena coil is an intrauterine system (IUS) that sits at the bottom of the womb – it has two strings that pass through the cervix so you can check it is still in place. Mirena releases an artificial progesterone, Levonorgestrel, to thicken cervical mucus to slow sperm down, to (sometimes) stop ovulation and most importantly for me, it thins the lining of the womb. It lasts for five years. It’s used to help people with endometriosis because by thinning the lining of the womb, and potentially stopping periods altogether, it stops those patches of missed-placed endometrium-like tissue from building up and causing trouble. It’s not a cure, but the hope is that by stopping my periods for a few years then it might turn endo off for a little while too.

    This is a big deal for me. I’ve spoken in great detail about how, despite everything, I’m actually quite fond of periods, but I’ve weighed all the pros and cons and the Mirena coil still seemed like the best idea for now (plus let’s be honest, my body probably won’t actually do as it’s told and stop bleeding). My gynaecologist told me to expect six months of sporadic bleeding and pain, but a six month blip of increased pain for potentially four and a half years of relief seems like a reasonable (hmm) trade off. Both my gynae and my GP encouraged me to stay on the pill for the first two months of the coil to try and make the transition a bit smoother. I was pretty resistant to this idea, not wanting to make my skin or mood any worse by increasing my progesterone dosage, but after talking to people who did so successfully I’ve followed their advice.

    Once I made the decision, however, I had to acknowledge the fact that fitting it was not going to be easy. Ideally it would have been fitted while I was under for the laparoscopy in April, but because my surgeon was so convinced it wasn’t going to be endo he didn’t do the consent form for it. When I saw him for my post-op he thought it possible I might have to be put unconscious in order to fit it. I desperately wanted to avoid another general anaesthetic so soon after the last, but evidently a pelvic floor dysfunction that makes any kind of vaginal penetration incredibly painful and/or impossible, meant it was on the cards.

    The doctor in charge of IUS insertion at my local surgery was a new doctor to me, which made me a little wary but thankfully she was lovely. I explained my experience with painful (and frankly unsuccessful) pelvic examinations and sex and my motivations for getting a coil in the first place. She was super understanding and came up with an action plan: I would take some diazepam an hour before the insertion to try and relax my pelvic floor. If my body was still uncooperative she would not force the issue. I was to take the day off and have someone accompany me to and from the appointment.

    Well, as the beginning of this blog gives away, the coil was fitted but it was twice as complicated and a hell of a lot more painful that I expected it to be. The doctor decided to use an anaesthetic gel, but that didn’t seem to provide much relief. Both she and the nurse were really supportive throughout but honestly it was a little traumatic. Even though it all happened quickly, we had to try various different tactics, positions and speculums. I wish I could say it was fine and just a little uncomfortable but it was a 10/10 for pain, which felt something akin to my cervix being stapled. It seemed like I might vomit and/or pass out and so I was given some water and told to take my time. Thankfully this pain didn’t last long but it was immediately replaced by hot, heavy cramping. Excellent!

    A man clearly made up the post-coil insertion rules because while tampons were off the cards, sex was not, apparently. The doctor advised me to use condoms for a week, at which point I reminded her of what had just happened and why – sex is not on my radar at the moment.

    It’s been about 10 days since the insertion and the pain is still very intense. Weirdly, it’s mostly been awful period cramps all morning every morning, resulting in copious amounts of ibuprofen and co-codamol and many hot water bottles, but in the afternoon it settles and I’m more-or-less OK. The last few days have also involved some excruciating vaginal pain, so that’s new. I have hardly bled since, but I’m expecting that to hit when I come off the pill in a few weeks. As much as I’m hoping the transition period might be shorter than six months, I’m not holding my breath.

    I am excited though. Mostly at the prospect of long-term relief in the future but also at the possibility that coming off the pill might mean my acne improves. The hormones in the Mirena are localised to the pelvic area, meaning there’s a chance it won’t affect my skin in the same way a systemic approach like the pill does. I’m trying not to get my hopes up about this silver lining but honestly when I think about it I squeal with excitement.

    Since it was so painful I didn’t want to throw yet another horror story out into the world, but a few people have asked for details so there we go. I think the fact I had it fitted during a particularly lengthy flare-up was both a blessing and curse. Already being in pain meant I was motivated for relief and so I didn’t chicken out but it also means I haven’t had a break from pain in weeks which is exhausting and definitely messes with your head. Nevertheless, I’m trying to keep in mind something I wrote in my diary a few hours after it was inserted, especially as my birthday approaches. I wrote, ‘with the coil comes new hope. Hope that 24 will see me make up for time lost at 22 and 23’. It’s a bit Star Wars but still, I’ll drink to that.

  • Vindication, endometriosis & some Douglas bloke | Pleasure Moans #3

    Vindication, endometriosis & some Douglas bloke | Pleasure Moans #3

    In my last blog I detailed my hesitation and resistance to my gynaecologist’s suggestion that I have a second diagnostic laparoscopy (keyhole surgery) to look for endometriosis. It feels weird then, almost two months later, to be writing that this week I had that surgery.

    My hesitations varied from not wanting to repeat another painful and probably pointless surgery like the one I had in August 2017, to wanting an endometriosis specialist to be the one to go in for a second look, rather than a general gynaecologist. Once I received a date for the operation I was more certain than ever that I was going to be withdrawing my name from the waiting list, but I had an upcoming appointment with a different doctor that I had set as the deadline for my final decision.

    This other appointment was a bit of a cock-up – I was supposed to have been referred to a specialist gynaecology clinic in London but wires were crossed and somehow I ended up with a referral to a sexual health clinic in London that specialises in sexual pain. The problem was, the only female sexual pain the clinic deals with was superficial pain, relating to pain that occurs externally or on entry, like vaginismus and vulvodynia. While I have had some run-ins with superficial pain, my most persistent symptom over the last few years has been deep dyspareunia – that’s deep, internal pain during vaginal penetration.

    When I got to the appointment I was, as expected, greeted with, ‘why have you been sent here? We don’t deal with deep pain, that’s gynaecology.’ But I was kind of hoping I might be referred to that hospital’s gynaecology department because it’s one of the best. He decided to examine me anyway, and I realised this was going to be something of a new experience when he said, ‘oh we use stirrups a little differently here…’ One bizarre examination later and he agreed with me that superficial pain was not a primary issue but that it was present. He also said I appear to have some pelvic floor dysfunction which doesn’t surprise me at all. Physio is something I’ve been increasingly curious about over recent months.

    When it became clear that he wasn’t going to refer me to the hospital’s gynae unit, I just decided to ask, ‘do you think I should have a second laparoscopy?’ He took a sharp inhale and said something along the lines of, ‘I’m sure you get this a lot and are pretty fed up of it, but it sounds like endometriosis to me.’ He was right, I have been getting that a lot, increasingly so. He suggested some urological and gastrointestinal causes too, but then he went on to explain endometriosis to me in a way no one else ever had before. He said, ‘some women will be struggling with infertility, have absolutely no pain and a laparoscopy will find endometriosis in abundance. Other people will have serious, chronic pain and yet when endometriosis is found it will be a really small, localised amount, probably on or very near a nerve.’

    This, pardon the pun, really struck a nerve. My symptoms have improved so much since going on the pill that it seemed to me that if I did have endometriosis after all then there couldn’t be very much of it. So I started to focus in on the one symptom that hadn’t changed – deep dyspareunia. I asked around, did a lot of research (I’m particularly grateful for the resources on the Nancy’s Nook Endometriosis Education Facebook page) and discovered that deep dyspareunia is often associated with rectovaginal endometriosis and endometriosis found in the Pouch of Douglas (POD).

    Image result for rectouterine pouch

    ‘POD’ struck a chord. Why did I know those letters? I started sifting through my (now finally organised) records of appointments, examinations and scans and discovered that on one of my more troubling scans, where a persistent hemorrhagic cyst (commonly associated with endometriosis) was found, a very small, uneventful comment was written: ‘some free fluid seen in POD.’ The POD, evidently named after some Douglas bloke, is also known as the ‘rectouterine pouch’ or the ‘posterior pouch.’ It’s the seemingly useless ‘cul de sac’ between the uterus and the rectum. Intelligent design, eat your heart out. The more I read about endometriosis-related dyspareunia the more it all seemed to marry up with my symptoms (retroverted uterus, constipation after sex, deep dyspareunia).

    It was this discovery, as well as my first debilitating period in a year, that pushed me to say I would have the surgery in April after all. I was pretty steady in this decision, up until a week before where I promptly freaked out. My initial fear was that I going to die and it was all going to be my fault, but most of all, I was crippled by the fear of going through the entire process again to be told there was nothing wrong but to continue to be told that my symptoms sound like endometriosis. It’s an incredibly frustrating cycle. Once I talked myself off of that ledge I was determined to be as prepared as I possibly could be for the surgery. Looking at it now, I think I did a pretty good job.

    I had a full sheet of questions and concerns that I wanted to run by my gynaecologist before I let him operate on me, all of which he respectfully and sincerely answered. A few included:

    1. Please don’t stretch my vagina, as you suggested you might – OK
    2. Since deep dyspareunia is my most persistent symptom can you please check my POD and look out for rectovaginal endometriosis – it’s unlikely but sure, I would have looked anyway
    3. Will you open up my old scars or create new ones? A bit of both, personally I prefer going in from the left, so that would mean a new scar
    4. If you find endometriosis how will you treat it? Burn it
    5. Is excision surgery not an option? I hear that it’s better. If it’s significant then I would excise it, yes.

    Ecetera, etcetera.

    Reassured by his answers and our rapport, I was readied for surgery and sat reading Chamber of Secrets until they came and got me.

    Inhale.

    A couple of hours later, exactly 20 months after my first disheartening surgery, my gynaecologist swaggered into recovery (where I was crying and swearing because my drugged-up self had come to the conclusion they hadn’t found anything) to tell me, ‘I found endometriosis in your Pouch of Douglas, it’s not in your head!’

    Exhale.

    IMG_7403
    Sore, surprised and a little smug

    It’s only been a few days and I’m still processing. It was a really tiny amount of endometriosis, but as I’ve been reminded time and time again, the severity of endometriosis does not correlate to pain. Giving myself endometriosis imposter syndrome at this point will help nothing.

    I can’t help but wonder what role my own advocacy and research played in finally get an, albeit tentative, answer. Would he have double-checked my POD if I hadn’t specifically done the research and asked him to? Would painful sex ever have been the symptom my doctors focussed on if I hadn’t forced them to? A widely touted statistic about endometriosis is that on average it takes 7.5 years to get a diagnosis, but that’s actually contested between 7 and 12 years. I’ve got here, where I’m not sure I have a diagnosis exactly but where I have had endometriosis discovered and treated, in three and a half years. But reaching this point has been a hell of a lot of hard work, physically and emotionally. I’ve been misdiagnosed with vaginismus, spent months attending psychosexual counselling, been placed on a pill that’s wreaked havoc with my skin and mood, taken anti-depressants for pain management, stopped running, stopped having sex, stopped socialising like a normal twenty-whatever-year-old. I’ve gained a lot too, knowledge, friends, writing gigs, a novel, job opportunities, a post-grad pathway I didn’t expect, a blog – but I am constantly curious about what the last three years might have looked like if my pain had been believed earlier, taken seriously sooner and treated promptly – by myself and by others.

    It’s not yet clear whether this is the beginning or the end of this particular experience. I have a million questions for my post-op appointment and I won’t know if the surgery has actually improved anything for months. But to have had the hysteria label lifted is hugely gratifying. Honestly, I feel vindicated because in my head the pain was never in my head. If that makes any sense at all.

    IMG_2795
    Of course, summer arrived the day after my op so I’ll be sporting some DVT stocking tan lines this year!