Tag: chronic pelvic pain

  • I changed my mind #Periodically 29

    I changed my mind #Periodically 29

    Maybe it’s because the idea of pain management came up directly after a flare-up, or maybe it’s because the drugs were actually working, but about six weeks into my trial with the low-dose anti-depressant amitriptyline, in an attempt to reduce my pain, I began to feel like this pain management route wasn’t for me. I sat on it for a couple of weeks and it wasn’t a decision I took lightly — I was well aware that maybe I was feeling like I didn’t need the drugs because the drugs were working. Except that wasn’t true at all, I was still in pain.

    The only noticeable difference was that my bizarre dreams, which I’ve always had a lot of, all became nightmares. I’ve heard that anti-depressants can mess with your dreams or stop them completely, the latter is a pretty scary idea for me. As a writer, I need my imagination to be relatively unhinged and out of control. The nightmares I can handle, but the idea that upping the dosage might mean I stop dreaming at all did not sit well with me.

    I knew if I went to my GP and said, “no I haven’t noticed any difference in my pain,” then her response would be to up the dose, as is standard procedure. But the very notion of how anti-depressants work as a means of pain management has bothered me ever since my GP first mentioned the idea. She said she was prescribing them, “essentially, to stop you feeling pain.”

    As nice of an idea that is, I don’t consider it to be a practical long-term solution, especially when I feel like there are still stones that have been left unturned (i.e. urology). Plus I don’t want to stop feeling anything, I just want to be in less pain, if that makes sense?

    I’ve now started with a psychosexual counsellor who is trying to make it dawn on me that my chronic pain may well be just that — chronic. I’m not too hot on accepting this “truth” just yet, but because of it, pain management is definitely something I shouldn’t shy away from. I need it for the sake of my mood, my work and my relationships (of all natures), but I think I’d rather open my world up to alternative pain management options before I put all my eggs in the amitriptyline basket.

    I discussed this with my GP and she agreed that it sounded like prescription pain management wasn’t the right course for me yet after all, and has instead finally granted my wish and referred me to a urologist. This means a lot to me — I’ve had issues with UTIs, my bladder and kidneys since I was two and while none of my current doctors are wildly convinced it’s got anything to do with my pain, for me, it feels like a really obvious path to explore. Here’s to owning your own health journey within the NHS!

  • Back in the Saddle (not that one) #Periodically 28 – Fitness in Mind

    Back in the Saddle (not that one) #Periodically 28 – Fitness in Mind

    The pelvic pain that these blogs have been documenting has forced me to give up several things that I took for granted in the past. One of them, some of you will know, is running.

    Four years ago now (where the hell did they go?!) I got drunk, fell down some stairs and signed up for the London Marathon 2015. It was the start of a pretty unconventional “fitness journey.” I somehow taught myself to run, trained for a marathon and completed my first marathon a year to the day after my first run. I wasn’t fast, but I had become something I had always feared: a runner.

    IMG_0299
    2015

    As much as I said “never again” after London, when the charity Worldwide Cancer Research asked if I wanted to run another marathon, this time in Paris, I couldn’t resist saying yes.

    “It was a mistake for many reasons,” I usually say at this point in the story. Not because I got seriously injured or anything, but because the Paris Marathon was hot, gruelling work – this time I really meant it when I said, “never again”.

    So after the Paris Marathon in 2016, I found myself with a new luxury at my disposal: running for fun. The entire time I’d been running it had been part of some grand marathon training plan, but as I moved backed to Swansea for my final year of university I had the freedom to run for however long or far I wanted to.

    Much to my surprise, I did continue to run. But never very far. I was just popping out for a mile run, it wasn’t exactly hard work but it was really nice. After a few months, I started to try and push it up a bit more, branching out to two miles or, god forbid, three. That’s when I started noticing a new pain, one that I associated with my period and, by this point, sex. No matter how much I stretched or how much water I drank this pain would show up around the half-mile mark and become unbearable over a mile. So I stopped running.

    Problem is, I didn’t start doing anything else with my body and consequently managed to age about 37 years in the process. Until…

    It was actually my counsellor who sent me in the direction of Fitness in Mind, which makes a lot of sense. I’ve lost complete control of my body and exercise is a big part of that. Fitness in Mind is a unique space where physical activity and peer support are combined to help people get into or back into exercise, particularly if they’ve been struggling with problems elsewhere in their life. It’s run by several sports clubs across the country, and lucky for me, the Brentwood Centre happens to be one of them. Even more amazing than that, the 12-week course of daily exercise classes is free.

    It was exactly what I needed, right when I needed it. I joined in week two and have been doing yoga and Mixed Martial Arts for the last eleven weeks. I struggled a lot with the Machu Picchu trek last year, but a successful ski trip in March left me with fresh hope that maybe exercise was less likely to hurt now. If I’m totally honest, I was expecting to discover that exercise didn’t actually cause any pain, that I’d just imagined it as an excuse to mooch about. When the gentlest of yoga stirred up the pain in my side, I was pretty gutted – I hadn’t imagined it after all. But I carried on, crucially I didn’t “push through the pain” because in my situation that could potentially involve a ruptured cyst, but instead I did what every instructor and activator on the programme told us to do, “listen to your body and do what you can.” So I pushed myself in yoga but never to the edge and I did everything in MMA except the kicking (which my body immediately said “no” to). It’s so obvious and so simple, but there was something really nice about having someone else tell me that.

    Surprise to no one, given the new sensitive version of Hilary I’ve become on the pill, I found the first few weeks quite challenging and not just physically. First at the discovery that exercise still hurt and then at the realisation that it wasn’t the end of the world. I wasn’t blubbing in the middle of yoga, but it was nice to know that I could have if I needed to – there was always peer support on hand. I’m still not “over it” but I think part of the last few weeks has been me realising that for whatever reason, fair or not, I’m no longer a runner. I hope that’s not a permanent fact, but it is what it is for now.

    IMG_6642
    2017

    The yoga has been so rewarding. After surgery on my abdomen last summer, I got out of the habit of using my core and have completely ignored it since. It hurt reawakening those muscles but I feel better and stronger for it. The MMA has been a laugh. I am no good at it, that’s for sure, but it’s been incredibly cathartic to hit a bunch of things for an hour a week.

    What makes this course what it is is undoubtedly the people. Participants and leaders alike – everyone just made it the safest space with zero judgment and zero stress. It was just a calm environment that allowed me to forge a much-needed new relationship with my body. Sure, I got a concession card at the end of the programme that gives me access to cheaper classes, but that is just a tiny perk in comparison to rest of this course’s benefits. It’s no secret that Brentwood has a fairly ageing population and admittedly I was one of the younger participants on the course but that only made the experience better. I met some incredibly interesting and patient people, none of whom made the assumption that because I was younger I could do more. There was no competition.

    However, I can’t believe how few people my age are using this amazing resource. Millenials of Brentwood, do you know that Fitness in Mind exists? Well, now you do. The next programme starts on July 2, sign up here or find out more on their Facebook page. 

    I haven’t lost a million pounds or transformed my body but I have had several overdue epiphanies, regained some strength and made some amazing friends. After a year of doing nothing more than walk the dog, that’s a huge achievement.

    Thank you Fitness in Mind for all your help! 💙

    IMG_0937
    Happy, happy testimonials!

  • Farewell Ovulation – Going Back on the Pill #Periodically 19

    Farewell Ovulation – Going Back on the Pill #Periodically 19

    In news that was both disappointing and not at all unsurprising, my new doctor and I recently agreed that I will be going back on the pill. I’ve known for some time that the pill was likely to be the quickest source of relief for my dysmenorrhea (painful periods), menorrhagia (heavy periods), dyspareunia (painful sexual intercourse) and general pelvic pain, but it was an outcome I wanted to avoid given my experience with the pill in the past. For details read A Tale of Two Pills and #Periodically 13.

    The decision, in the end, wasn’t nearly as hard as I thought it would be. The quickest way for me to get some relief at the moment is to stop ovulating, and the combined pill does just that. Getting the prescription was thought-provoking though:

    Having been on Rigevidon (combined) and Cerelle (mini) in the past my main qualm was that I wanted to try a different dosage or brand this time. Now, because of the sad old state of our NHS, my gynaecology appointment was outsourced privately, so when the doc said I could go on Microgynon I nearly fell off my chair. Microgynon is technically the same as Rigevidon, it’s made up of a synthetic oestrogen and a synthetic progesterone that you take 21 days in a row and then you have a withdrawal bleed for a week – standard pill talk. BUT, Microgynon is the pill many my friends and sisters started on, had no problems with but were unexpectedly taken off of. Many of them have been switched to Rigevidon for no apparent reason. Maybe it’s paranoia but I am very suspicious that Rigevidon is simply cheaper than Microgynon.

    The gynae gave me a two month prescription of Microgynon but it was a private prescription. The doctor recommended I take it to my GP and ask them to refill it so I could get it free on the NHS, since it’s contraception. I am doing exactly this when my GP says, “I’m going to put you on something called Rigevidon, it’s basically the same thing” – I was furious. So I said, “no, it’s going to be Microgynon or nothing, that’s the only reason I agreed to go back on the pill. ” I was ready for a fight, but he quickly said, “OK” and printed out a prescription for six months of Microgynon. I was floored that it was so easy to get what I wanted, which only further makes me suspicious that the problem with Microgynon and Rigevidon is a price one – but, I should add, that is pure speculation (but still, #SaveOurNHS).

    So now I have the prescription the real drama starts. Over two and a half years ago I decided to come off the pill for several reasons. They were mostly because I had ended a relationship and wasn’t looking to get giggy with it, I wanted to try and get my sex drive back and to also get my mind back to something I recognised. I got so much more than I bargained for coming off the pill, good and bad. I got a new lease of life and creativity, my boobs dropped two cup sizes (to my delight), the world literally smelt different, I rediscovered my libido and I started having periods again. But equally, my periods were more painful than I remembered them being before, my skin got worse, I started spending money on sanitary products again and I discovered PMS. At that point in time, the pros outweighed the cons. The psychological benefits I felt coming off the pill were huge, and being able to track all these changes on Clue meant I could exploit them.

    giphy.jpg

    All good things come to an end however, and the last year has offered fresh pre, peri and post menstrual and ovulation symptoms and complications. As I’ve mentioned (a lot, sorry) discovering that sex hurt when it didn’t used to, was a real blow to my relationship with my body (and romantic interests) – what good was it to have my libido back if I couldn’t use it? My periods have left me exhausted and even grumpier than normal because I’ve become anaemic, and I’ve grown at least one hemorrhagic cyst, though there’s a lot of evidence to suggest there have been a few cysts that have been and gone.

    There are a couple of things people have said to me since I found out I would be going back on the pill that I would like to address. I stand by what I’ve said about hormonal birth control in the past – I think it’s shit. There has to be a better way and I am confident there will be soon – I’m talking to you FemTech engineers. Since I am currently the most single and unsexed I have been since adolescence, my reasons for going on the pill at the moment are not for birth control. I still think the pill is a sorry excuse for birth control, one that has brought about both hugely beneficial social changes and immense personal problems. It is a concept that demands lots of criticism. This time, I am going on the pill to deliberately mess with my menstrual cycle in the hope of getting some relief. It might fix my problems, it might just ease my symptoms for a while, it might do nothing, hell, it could even make things worse, but without having more potentially disappointing surgery, it is my only option for now.

    giphy (5).gif

    The other thing I’ve been asked is “do you think you’ll be paranoid about the negatives of the pill this time round, and therefore never give it a fair chance?” I thought so at first, but I am actually feeling really open minded about it. December was a real toughie pain-wise and anything that offers relief is my friend at the moment – it is worth a shot.

    The last two years and seven months have seen twenty-six cycles – something I know thanks to the wonders of Femtech, particularly Clue. I have gotten to know my body in crazy amounts of detail, which has been both a blessing and a curse. I am really sad to be leaving this period (punny) of time behind, but I am going to try and see it as an opportunity. Since I have been tracking my cycles in great detail all this time, I am really going to be able to see the changes, good and bad, that the pill brings – plus, I get to try out Clue’s pill tracking functions for the first time. See, I’m already seeing the bright side.

    I won’t be starting the pill for a couple of weeks, and I have no doubt that the first few months will be a little wild, but in the mean time I’m going to relish the natural peaks and falls of my hormones and look forward to less-pain in the next few months.

    And to end this long (sorry) love letter to my natural menstrual cycle, I would just like to acknowledge that although I have tracked over 100 days of pain medication consumption during the last year or so, I have also tracked over 200 days of feeling happy, so that’s nice.

    Going on the pill means I will be cutting my trial of Natural Cycles short so my review will be coming sooner than planned. Let me know on Twitter what you would like to hear about my experience with Natural Cycles and I’ll try to fit my responses in.