Category: Pain Management

  • Persistence – #Periodically 17

    Persistence – #Periodically 17

    Long time no #Periodically, but don’t fear I’m back with another exciting instalment of “WTF is happening in Hilary’s pelvis” – I’m sure you were all anxiously waiting.

    So we left off with the discovery of two cysts, one functional (good), one hemorrhagic (bad) on my right ovary. The protocol is to wait six weeks to see if they go or grow. I also had a blood test taken the day after the first internal ultrasound and was informed there was something in those blood results that I needed to see a doctor about, but typically (#ToryBritain) the first available appointment was six weeks away. Conveniently though, it was scheduled for the day after the follow up ultrasound.

    I had a couple of really rough weeks in the middle of the wait for “answers”. I was both stressing about what was wrong with my blood (who tests for PCOS and Ovarian Cancer, says something’s wrong but doesn’t tell you what?!), dealing with a sudden and random horrible outbreak of acne and a flare-up of top-notch pain. I was pretty miserable company for a fortnight (sorry friends and family – thank you for not disowning me).

    Let’s throw it back to November 2016 for a second, where the first blood results I had to search for a problem revealed nothing. I did have slightly higher levels of androgens (male hormones) than normal, but nothing that warranted suspicion of PCOS (Polycystic Ovarian Syndrome). So when they found the cysts and something in my blood this November, I couldn’t help but wonder if I had just noticed symptoms of PCOS really early, and the androgens were now at a higher level and had been picked up in my blood. So what does any sane person do in this situation? I GOOGLED. I’m actually glad I did as I quickly learnt the surprising fact that despite the name, polycystic ovaries does not involve many cysts. It involves much smaller bubbles of fluid that grown on the ovaries in abundance. I don’t have that, so I relaxed. But my hairy disposition and sudden acne break out didn’t help calm my PCOS suspicions.

    Now because life is cruel, the six weeks came around and I was due on my period the exact same day as the internal ultrasound. While offering some potential technical problems, it also meant I was super on edge as I tried to suppress my PMS in the hope of postponing my period (this actually worked remarkably well but it also postponed and intensified my PMS, would not recommend). The internal ultrasound goes smoothly albeit painfully, and the sonographer immediately says “oooooh no,” as she sees that the hemorrhagic cyst is still there. “That should have gone,” she said. Problem is, it didn’t grow either, which, she explained, means it’s unlikely I will be referred for any kind of treatment. So I have a “persistent hemorrhagic cyst”.

    The next day I show up bright, early and menstruating for my blood test results. Happily, it was nothing too serious, just that my iron levels are a tiny bit low, which is consistent with having too heavy periods. Unfortunately, I hadn’t seen this doctor before, and having to explain all my symptoms all over again mid the hormonal meltdown I was having, resulted in some really attractive sobbing as I explained the last few years of pills, pain and frustration. This sobbing only worsened when she informed me that contrary to what I’d been told, Dr C never actually got around to referring me to a gynae in Essex. I explained to her that a big part of my frustration is that in 2015 I ran a marathon, in 2016 I ran a marathon but in 2017 I need a lie down after a dog walk. Not being able to have sex isn’t great either obviously, but exercise is a really great way of feeling like you have some control over your body, it’s difficult losing that control.

    However, the sobbing seems to have worked as Dr E has referred me to a local hospital, which should be quicker, and like the God she clearly is, she gave me something. I remain a little perplexed that no one has ever even offered me the medication she prescribed before, as its literal purpose is lightening menstrual flow and potentially easing period pain. It’s non-hormonal and I take it only when I’m on – pixie dust, clearly (Mefenamic Acid IRL). I can’t say I’ve noticed a huge difference thus far, but my period pain has been a little more manageable. I can’t take ibuprofen with it, which makes me nervous that if it doesn’t work then my main source of pain relief is out the window, but we’ll give it a good ol’ college try.

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    The latest venture.

    There are lots of frustrating things about this situation, but the two I’ve learnt this week are that the combined pill might stop the cysts from growing in the first place but that no doctor wants to put me on it because of DVT and breast cancer risk factors. The other is that both the sonographer and Dr E’s response to my pain outside of my period has been to say, “yes, sometimes cysts can be painful”. Trying to communicate to them that whatever is causing my pain, cyst or otherwise, is really painful often is proving difficult.

    So with a bit of persistence, like the pesky cyst, I’ve managed to get something to help with period pain, iron tablets that should help with sleepiness, and hopefully a decent and quick referral. It’s not exactly good news, but it’s something.

    Confused? Start the saga from the beginning here. 

  • Gynaecological Whiplash #Periodically 15

    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.

    wth

  • Recovery & do I Regret Having the Laparoscopy? #Periodically 12

    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’.

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    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.

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    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.