Starting treatment today felt like perfect timing, with a particularly painful night last night and no less than five wee trips! Phil welcomed me into his lovely clinic in Sale this morning and I immediately felt at ease despite the ominous looking machine in the corner. The machine is wired up to pads which were placed around my lower abdomen and back - see pics below. Very 'star trek sickbay'.
The pads send electrical impulses to activate the deep muscles, and the idea is to get the pulses as intense as possible (without them being overly painful) within the first few treatments to truly benefit. I suppose as I am already fit and (apart from the endometriosis) healthy, with a fair amount of existing core strength, we were able to get the impulses to the higher end pretty much straight away, so I'm hoping within a few treatments I'll really be able to tell you about the benefits of the arysis trial!
As it's only day one all I can really tell you so far is that is wasn't as scary as it looks, mostly tickled and twinged, and I certainly feel like deeper muscles have been activated than the ones I use when I'm doing crunches or planks at the gym! We established quite quickly that I definitely have a more dominant side (most people do) and therefore while we were getting the balance right I feel like my right side has been worked considerably harder than the left for the majority of today's treatment, leaving me feeling slightly wonky in my aching! This shouldn't be so much of the case next time though! The aching in my muscles has definitely made me more aware of my posture today and I feel like my 'internal corset' has already been tightened, which is almost definitely leading me to be activating my core a bit better in every day life and tasks, which can only be a good thing! Phil did mention that the way the muscles are tightened and toned through the treatment would probably lead to inch loss, but we didn't take a waist measurement as I am already quite small and not in it for the inch loss! I'll be sure to report back on any physique benefits I notice as a bonus of the trial, though! I certainly feel like I've been worked hard, and I'm looking forward to seeing how my symptoms are over the next week or so after another treatment or two, and I hope to notice some correlations to report back. I feel like my life would be a dream come true if I could sleep through the night just for once, so watch this space! :-)
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UPDATE - as mentioned in my bottom comment for 'day 11' - see below a pic of my abs! :-o
DAY 2
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So, I'm very wary about posting about "results" yet because it's so early into the treatment. So I'm just going to talk about how I've felt today and what I've noticed so far. In terms of pain, no real change yet; I had some exercise pain today (but I was pushing myself quite hard with some hill sprint so that's relatively self-inflicted I suppose), and currently have the usual dragging abdominal pain. However, I did only have to get up to pee twice last night, and both times (and something I have noticed today) my bladder actually felt full as I was emptying it, rather than usually I need to go very frequently and there doesn't turn out to be THAT much there. There's still pain, but again I'm not expecting immediate results :) Session #2 is tomorrow, so let's see how it pans out! Feeling positive so far! Not aching tonnes today either as I did some stretching last night and this morning :)
DAY 3 / SECOND ARYSIS SESSION
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Still very wary about talking about 'results'. However, last night I also only had to get up twice, and I feel increasingly like my bladder is ACTUALLY full on the (slightly less frequently) times I need to pee. Had a bit of pain earlier but again I did go to the gym and push myself quite hard. Generally just feeling GOOD and less fatigued today, probably due to getting up less in the night. Interested to see if this continues! Running 21k on Sunday so I'll be interested to see how much pain I'm in during the afternoon, as last week was pretty bad!
Today's arysis session was good and I knew what to expect this time. Phi suggested that I try putting the dials up/down myself as I felt I needed them, and I (think I remember correctly!) managed to get to level 6/10 on the right side, 7/10 for the left and 8/10 for front abdominals, which is apparently quite impressive for session two ;) I'm sure having a good base level of fitness has really helped with this and so I'm really motivated to keep working hard at the gym/with my running. As with anything in life, I guess the results are going to be more postive if you are active and eat healthily. Definitely felt like my muscles had been worked hard this morning, however not feeling it too much tonight (again probably down to doing some stretching and the fact that I don't like being too sedentary so don't tend to stiffen up too much!).
DAY 5
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Didn't post yesterday as I thought I'd do one main post for the weekend :) I feel comfortable in saying that my pain levels have definitely been lower this weekend (particularly when peeing, my stomach doesn't "drag" as much), even though I smashed out a sub 2-hr half marathon distance this morning in my run, usually I'd be suffering for it now but I feel great! I felt like this morning would be the big 'test' to see if this week has begun to produce any results, as usually after a more intense OR a very long run I'm in pain for the rest of the day. But currently I feel good!!
Also - my BIGGEST news is that for the first time in OVER A YEAR I only had to get up ONCE last night to pee! I could have cried this morning with happiness at the wonderful night's sleep I got. And of course, my fiance slept so much better because I wasn't climbing over him 5 times in the night!! The only thing in my life that has been any different to the last year is the arysis treatment, even though it's only early days I'm positive that it's helping already. I know that sometimes pain-related improvement (and urology symptoms to an extent I guess) can be psychological, so part of me has to question whether positive/hopeful thinking has had an effect, but the improvements have been so drastic that I'd already be keen to suggest to other people in my position that they give this a try.
I'm overwhelmed and really excited that I might be able to start taking back more control over my symptoms, and to actually catch up on some sleep finally!! :)
DAY 7
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I had my third treatment session yesterday - apologies for the lack of post, I'm back at work in my school as of this week and am therefore a bit snowed under fitting everything in! Things are going super well, I'm up to a solid '8' on all of the dials now and really feel the muscles working in the session.
In terms of my symptoms, I'm still really impressed at how full my bladder gets before I need to pee...sounds like a crazy thing to be overjoyed at but unless you've experienced similar, it's difficult to understand how annoying it is needing to pee ALL THE TIME, especially at night!! Sunday night I had to get up a few times but I'm pretty sure that was anxiety for my first day back at work; last night I was only up once again!! And I've been having next to no pain dragging in my gut when I go to the loo so that's amazing!! I've also had no spotting or random bleeding since the trial began (although mine can be a bit sporadic and I'm aware 7 days isn't that long, so I'll be sure to keep reporting on that!).
In terms of pain, I've had a few twinges today and generally felt a bit bloated. I tend to feel much worse when I'm stressed, and my stress levels have definitely rocketed over these last two days as I've been teaching long days (I'm a piano teacher at a grammar school and start teaching AT 8am until after school finishes), as well as fitting in appointments and marathon raining on top of day to day tasks/chores. I know this sounds like I'm being defensive of this trial, however I'm absolutely positive after the two days I've had, I'd be feeling FAR more in pain/bloated right now usually.
I have Wednesday mornings off so I'm planning on a 5mile run and a big gym session tomorrow, so usually I'd be banking on being in a fair bit of pain after the routine I've got planned, so will be interested to see how I feel following that. Hopefully I'll be well-rested for it - it's silly but I really look forward to snuggling up in bed now I feel confident I won't be up again within an hour or two!
DAY 8
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So I was hoping to be well-rested today but unfortunately that isn't the case! Luckily it wasn't down to my bladder and I had a good night in that respect, only needing to go twice, however our furry little feline princess decided to bring us a thoughtful gift of a STILL ALIVE GIGANTIC LIKE YOU'VE NEVER SEEN SPIDER at just gone midnight. Cue much freaking out from my fiance and I, a few tentative swoops with a wodge of loo roll before simply bundling the 8-legged monster into a pair of shorts that was already on the floor and promptly tying them into a bag and throwing them away. Obviously after such a traumatic experience, sleep was not immediately on the cards, resulting in a very tired day (I waffle when I'm tired....can you tell??).
Anyway, I was gutted because I was so looking forward to my morning of fitness but my pain is always so much worse when I'm already mega fatigued. I forced myself out anyway - ran 5miles to the gym and then did 90mins of pretty hardcore functional fitness. I had resigned myself to spending most of the afternoon in pain so figured I may as well push myself to the max!
But it's been 6.5hours since I finished working out and I've been in absolutely no pain whatsoever! And I'm not even bloated today either! Absolutely buzzing. The only time Phil could fit me in for an appointment on Friday that was mutually convenient was 8am; usually I'd feel a little grumpy with myself about having to drive back into Manchester during rush hour - however, all I can think about is how much I'm looking forward to my next appointment and how amazing it feels to be on top of things!! I've drawn so much extra energy out of not being in pain despite the fact that I'm so tired I couldn't even hold a conversation with the cat earlier. I started this trial with some intrigue, but much wariness, on the off-chance that it was worth a try after so many years of feeling crappy - but I feel like my quality of life has already improved tenfold. The only thing in my life that has changed is the arysis appointments and from what the other girls are reporting there definitely seems to be a positive correlation. I truly hope that this can end up being taken forward to help other people who suffer with chronic pain, as this for some people could be truly life-changing.
DAY 11
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So, I had just my fourth treatment session yesterday! I feel great and the dials for the impulses to my front abdominals are now all the way up to ten, with back and sides catching up!
I did my first parkrun since starting the arysis trial this morning. It was pacer week and I was determined to smash a new Personal Best. My most recent PB was just over 24minutes when I did parkrun a fortnight ago, so I over-ambitiously decided to go with the 23minute pacer (when really I should have been aiming only to shave 20-30secs or so off of my time!). Unfortunately I couldn't keep that pace, and, having started too fast, found myself at risk of being overtaken by the 24minute pacer and losing out on my streak of personal bests. So I pushed. HARD. Usually I sprint the heck out of the final 200m and the intensity of that push usually means I can feel the abdominal pain building before I reach the finish line, and am usually then in horrendous pain for the rest of the day (made worth it by the achievement of smashing another personal best, however!). Well, today, because of my mistake at the beginning I had to work that hard for most of the final kilometre. I could feel the dragging intensity in my gut - the grit and determination of NEEDING that PB again only JUST overriding my dread of how much pain I was going to be in for the rest of the day... however the pain I was bracing myself for come the finish line never came. I've felt amazing all day. My fiance and I took a walk to the Lowry centre and had a lovely afternoon!
I am honestly reeling from not having had any pain today. I actually feel quite on edge that it's going to strike at any moment, it honestly feels too good to be true. Plus, I have no pain when I pee whatsoever, still not getting up more than twice in the night and my bladder capacity definitely seems to have increased!
OH - also I said I'd update you guys on any 'physique' benefits I noticed as a bonus side to everything else the trial has been doing for me! Well, I can't post pictures in the comments but I've edited my original post to show a pic of my waist/abs. Now, I can't personally vouch for the arysis system if you're starting from no muscle, as I already do a relatively gruelling set of core circuits every day to tone my waist/abs. However, arysis has noticeably sped things up and I've gone from happily toned hourglass shape to "you might break your fist if you punch my gut"....I love it!
DAY 14
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Officially two weeks into the trial today :) Sorry I haven't posted much over the last couple of days but in all honesty I've not really had anything to comment on ; no pain, no bleeding, no pain when peeing, no "I had to get up seven times to wee last night"-induced exhaustion. I did another 21k run at 7am on Sunday followed by a morning of work and an afternoon at a friend's leaving do, and really I should have been totally done in, but I felt great and had no pain at all! Next session is tomorrow, hoping I'll get up to 10 on all the dials by the end of this week.
My appointment came through to see the regional specialist in Oldham on the 10th November. Even though the trial will be finished by then, I'm planning on carrying on with the arysis treatment and will be mentioning it to the consultant that my symptoms are so much better and my life has literally changed. I'll make sure I post about his reaction even though the trial will have finished by then (I'm planning on continuing the arysis treatment and will probably periodically do a post anyway)!
Okay, I've officially lost track of days. Oops. However, I'd now had 8 sessions of arysis so I'm about 4 weeks in out of 5.
ReplyDeleteToday, I discovered something not so good about the arysis trial.
My consultant has me take the microgynon contraceptive pill packets for 3-4months back to back to prevent me from having so many periods and in theory so the lining of the womb can't grow too much, etc. The pros are that I only have to have a few periods a year, and give or take a packet I can 'time' them so that they fall in school holidays and don't have to affect my work. The cons are that when I do, they are horrendous (and eat up my holidays). So much pain it makes me sweat and hunch over involuntarily, immobile and useless.
So this week I was very apprehensive to be on my week off of the pill (although also quite glad it fell into the time that the arysis sessions were happening), just to see how it was. Because it's so long between periods they never quite come at the same time, so I haven't been sure when to expect it. However I usually get at least a day's warning of horrendous pain before any bleeding starts.
Today, as I said, I discovered something not-so-great about the arysis trial. I got home this evening and discovered that I had come on whilst being completely and utterly none the wiser. Nice pants, IN THE BIN. Not impressed....!
Of course, I'm joking. I'm actually totally blown away and not entirely sure how to feel - it hasn't quite hit me yet. I feel like I COULD be REALLY emotional. But I'm also absolutely shattered from work this week and in one of those moods where I'm just too knackered to feel much at all...! But this is literally the first time in my life that I haven't been in pass-out levels of pain because of my cycle. I mean, I've been feeling a little bloated (and irritable) but it's really surreal. I'll be interested to see how I feel tomorrow when I'm in "full flow", so to speak. Mmm...TMI? Deal with it, I'm too delighted to care :)
So today has been a bit more painful. At first I felt a little disappointed as yesterday was so pain-free it bowled me over. But then I accepted that, come on, for the first time in three months my WOMB is SHEDDING and my uterus is not going to be a blissful utopia. So, it could be worse. I overdid it a bit by going to the gym directly from seven straight hours of teaching (with a twenty minute break) and couldn't finish my workout, and I think I'm hurting more now as a result, but I'd have felt worse if I hadn't tried.
ReplyDeleteThe pain isn't great but it's a massive improvement on what I would have been going through otherwise - I haven't needed any cocodamol whereas usually by now I'd have ingested enough to floor a horse, and in a weird way the pain feels "clean" and "fresh" - it's crampy pain and that's all it is. No heavy, draggy, clammy-handed sweaty-headed waves of suffocating pain. Just somewhat-less-than-pleasant twinges and cramps which I guess is what 'normal' people go through? Correct me if I'm wrong, I honestly wouldn't know...! Anyway, I'm still just over the moon that I didn't have 1-2 days of crappiness before I came on - I feel like I've been granted some life back, when usually I just feel very hateful towards my body for forcing me to feel horrendous through a menstrual cycle that serves me literally no purpose whatsoever.
So having come on on Thursday with no pain, and minimal pain on Friday, I then had quite a painful night on Friday. I'm wondering if this is partly down to how exhausted I was and how hard I had tried to work at the gym, but I woke up a few times with pain and caved in at around 3am for some cocodamol. I was volunteering at Parkrun on the Saturday morning and was worried that standing around marshalling for an hour would be really painful, but I actually had plenty of energy (considering how disrupted my sleep had been) and didn't have any pain at all during the day. Yesterday evening was also fine, and I had a pain-free 10k run and solid 90mins of hard work at the gym this morning, the only difference being my flow varying between quite light and really quite heavy throughout the day. I think it's down to the exercise however it's difficult for me to notice real correlations with my periods as I have them so spread apart!
ReplyDeleteHowever, the one thing that has really noticed is I only had that one evening and night of pain and the rest of the time has been absolutely fine. Even with the heavier moments today I've not had any painful twinges! Which is a huge difference as the one constant even when my periods are 3-4months apart is that they are always incredibly painful and fatigue-inducing.
I also found out at a support meeting on Saturday that chronic endo can count as a disability on a case-by-case basis, and I may be legible for PIP (Personal Independence Payments), which as a self-employed person would be incredible (as at the moment if I'm off sick I simply don't get paid) and also means that I will be able to afford to continue having arysis as regularly as I'm having it now without having to worry about finances. I'll be continuing a blog page of my own once the arysis trial is over so I'll post about my whole experience with that...I can't imagine the government make it easy but you never know if you don't try..!
So I made another booboo today! Because I've been in literally zero pain I had excitedly planned my morning off tomorrow around a lovely leisurely swim whilst I'm tapering for my half marathon on Sunday. Packed my gym bag and everything all ready for tomorrow, then realised I can't go for a swim because I'm still on a bit. I've literally just been forgetting I'm even on my period and I've had so much energy as a result - it's not constantly THERE, on my mind, shooting pain through me like a knife. I had my 9th session yesterday and it was fine, I got up to solid 9s on the dials despite being on and have my final session of the trial tomorrow - here's aiming for 10s all round! :)
ReplyDeleteI had my final arysis session of the trial on Wednesday! The new machine had arrived so I was excited to be the first to try it! The 'pulling' sensation on the muscles felt a little different, in my opinion, the pulse started less intense and then 'grew' over a second or two. But the results have remaind the same. I can't believe how much has changed for me in merely five weeks. I have so much more energy, there's no way I'd have survived the beginning of this term so enthusiastically without the effects that I believe the trial has had on me; proper nights' sleep and truly incredible reduction in pain being the main two. I really hope that from a medical perspective this is able to be taken further, as whilst I feel really lucky to have had my life changed in this way, I feel pained for all the thousands and thousands of women in the world who are still suffering. This is no cure, as we know - because of the way endo works, there is no way that this could be 'treating' or 'shrinking' the endometriosis, however, the symptoms have become so much more manageable and it is the symptoms of the disease that are so life-destroying for so many.
ReplyDeleteI feel that I owe a massive thank you to Phil for giving up so much time and energy to those of us who took part - as part of the reason endometriosis is so little-known and under-funded/supported is down to piss-poor womens' health services and a general disregard from the patriarchy for things that effect women, for a bloke who will of course never ever have to suffer himself from this disease to show an interest in standing up for us and making a difference means the absolute world, and we need more people to pledge to make a difference in this way, men and women alike.
I will be continuing the arysis treatment - hopefully covered by my PIP payments if I turn out to be legible (which I'm told I should be); so, there IS a way for women who may struggle to afford a treatment like this to get financial help.
I'd like to thank everybody who has commented so positively about my blog; I'm hoping to set up my own independent blog at some point (it will be more of a lifestyle blog covering my sporting endeavours, cooking and geeky hobbies as well as dealing with my endometriosis and its effects on my day-to-day life), and will have the link posted on this page once I've set it up, so do check back now and again :)
Thanks again to everybody involved - being involved in this trial has in no uncertain terms changed my life.
Hi everyone!
ReplyDeleteSo, after what, 18months or so? I'm back. My surgery has helped in so many ways but unfortunately I am starting to be in a little bit of pain again. I'm currently fighting for an elective hysterectomy but in the meantime I decided to reach out to Phil again to book some sessions in.
I am so surprised at how quickly my body responded to the arysis treatment again this time around, like it was being kick-started! I was in a lot of pain before my first returning appointment, and strangely I was in a little more pain immediately afterwards but the next day was almost entirely pain-free and I noticed my pain levels were lower for the rest of the week. I'm hoping that as my symptoms aren't anywhere near as severe as they were when I was having the arysis treatments multiple times per week, that I can get away with a 'top-up' session every week or two to keep on at my system..particularly as I'm moving for a new job in September and will only be back in Manchester every 4-5 weeks! So I'll be popping back in to update you on how having slightly more sporadic treatments works out for me with my (currently) less severe symptoms :) x