Tag: Vaginismus Network

  • When will I learn? 

    When will I learn? 

    I spent much of the last blog complaining that one problem with endometriosis is that eyeing it up as a suspect for any new or re-emerging symptom is unhelpful because treatment = surgery and waiting times = incredibly long, especially at the moment. Shortly after I wrote that, the universe said ‘hold my beer.’ The pace has picked up. Significantly. That gynaecologist appointment I had scheduled for September, the one I’ve been on the waiting list for since last September? Well, that’s now been rescheduled for April. (April 2021 – I checked). Why the sudden change of plans? Because the colonoscopy revealed, as much as I don’t want to hear it, that actually, it is the endo.

    Let’s step back a second. I went into the colonoscopy highly stressed. I was already anxious about it, in part because in Belgium colonoscopies are performed under general anaesthetic as standard and I’m currently separated from my family by a pandemic and a new political border. This meant I had to turn to my wonderful friends in Brussels to chaperone me home from the procedure. But then of course, the day before the procedure everything that could have gone wrong went wrong. From the first set of laxatives making me pass out, to my neighbour’s radiator leaking into my flat and my dear friend and chaperone getting covid. It all culminated in one very strange and stressful afternoon of me sitting at my desk, trying to work, sipping laxatives, lining up another angelic friend to escort me home from hospital while two men smashed a hole through the ceiling. 

    By the time it came to the procedure, I was suddenly grateful I’d be under general anaesthetic, a chance to sleep – at last! A good thing about the stressful build-up was that I didn’t have time to dwell on the outcomes of the colonoscopy, although I will say I had rather cynically decided that it was yet another unnecessary and invasive procedure that would more than likely result in absolutely nothing. This was also along the same lines as the last thing the gastroenterologist said to me before I went under.

    When I came round, not only was I thrilled to find that my anus still felt relatively normal but I was greeted by a surprised and slightly confused gastroenterologist. She had found something after all – a lone ulcer in my colon. She said it was strange. If it were Crohn’s or Ulcerative Colitis, then there would be more than one ulcer. She said it could be that we’d found one of the two inflammatory bowel diseases very early on, but that it seemed unlikely. Either way, it was a serious answer to why I have been experiencing rectal bleeding. She handed me a letter to give to my GP, with some options to explore.

    It’s fair to say that I’ve been miserable company since then – it’s a good job I live on my own at the moment. My GP took the reins and has been brilliant, communicative and actively exploring scientific papers and new hypotheses with me. But the day after the procedure she rang me to inform me that whatever happens now, I cannot take ibuprofen. It’s hard to describe how significant this is without sounding completely OTT. For the last five years, pre and post diagnosis, through every treatment I’ve tried, ibuprofen has been the only reliable pain relief I have had that doesn’t send me to sleep, mess with my head, make me lactate (yes, really) and that actually reduces the pain enough for me to enjoy myself or concentrate for a few hours. To be told that the solutions to new and old problems are still unknown while having my main crutch taken away… it’s really tough. 

    Tough even more so because as much of my social bubble gets excited about the potential end of lockdown life in the UK, I’ve already been feeling nervous about a return to normality. Working from home has been much easier for pain management, the idea of working in the office without ibuprofen is terrifying because I know I can’t do it. Things in Belgium are very different from the UK though, and a return to ‘normality’ is further out of reach. My GP is taking my concerns about pain management seriously though and promises that we’ll have a new plan by the time office life, all-day weddings and adventures begin again.

    We (my GP and I – a team, at last! This is how it should be!) both did a lot of work to follow up on the colonoscopy. My doctor chased the biopsy results and asked them to test for endometriosis if they could. They weren’t able to unfortunately but they have, thankfully, ruled out Chron’s and colitis. This means with some certainty that the ulcer in my colon is caused by endometriosis: either a secondary cause in that the ulcer was caused by too much ibuprofen or a primary cause, meaning that it might not be an ulcer at all, but an endometriosis lesion. Both these theories are backed up by the fact the rectal bleeding tends to happen the day after an uptick in ‘period’ pain. My job was to let my new gynaecologist’s office know of the news and our concerns around it, hoping that it might lead to a bump up the appointment list. And it did! 

    This is good news because it’s a step forward, rather than just standing still as I’ve been for the last 18 months. However, it could mean that more surgery is on the horizon sooner than I expected and I do not relish that thought. 

    I’ve found this month so far, which is also Endometriosis Awareness Month, difficult and emotional. When I found out about the ulcer, I realised I’d been doing it again, telling myself that I’d imagined the symptoms. I understand why I’ve developed this behaviour but the come down from realising that something is wrong and that I did the right thing by asking for help is still quite a shock to the system. The day after the colonoscopy I joined the Vaginismus Network’s meeting. I always find these meetings moving but Sarah Rose McCann, whose own experience is not dissimilar to my own, spoke and had me sobbing. It was super cathartic and her talk and the whole event was incredibly inspiring, but I was just overwhelmed with some kind of grief. I was really, really sad that so many of us are still in so much pain, still searching for answers, still not being taken seriously, and now, it seems, I’m not even taking myself seriously. I hope my blog is part of the collective action that will raise awareness of and soon see the back of so much suffering. 

    The British government is running a consultation on the future women’s health strategy for England. Like many, I’m deeply sceptical and am still waiting to see policy changes and, more importantly, improved health outcomes. Yet if we don’t complete the consultation then our voices will go unheard. So I will be completing the consultation and I hope you will too. It’s also important as many voices as possible are represented in the consultation, and if it’s just a bunch straight, white women like myself taking part then it will be about as useful as a chocolate teapot. So share it with all the womxn you know, let’s give the government more than they bargained for and demand change. 

  • My Vaginismus & the Vaginismus Network #Periodically 23

    My Vaginismus & the Vaginismus Network #Periodically 23

    I had a different blog planned for this week but after a rather special evening on Friday I’ve had a change of heart. Today I want to talk about something I’ve only touched upon before – Vaginismus. 

    In #Periodically 18 – “Can I examine you?” – I spoke about how my gynaecologist had informed me that as well as the unidentified shit storm working its way through my womb that I had now also developed a “superficial problem” – vaginismus. But that’s the first and last time I mentioned it. Since then, I’ve turned the blog’s focus towards the hormonal adventure I’m going on in an attempt to resolve the internal issues. Given that #Periodically is a blog where I very graphically talk about the inner workings of my reproductive system, why did I stop talking about vaginismus? It was a diagnosis I was neither expecting nor knew much about, but when I started #Periodically I wrote, “I don’t want to write about it after the fact, because after the fact might not be for a long time. I want to write about it while it is happening.” The same is true for vaginismus, so let’s do that. Today I want to talk about vaginismus, what it is and how an evening with a group of extraordinary women at the Vaginismus Network completely transformed my feelings towards it.

    Vaginismus is the uncontrollable clenching of muscles in and around the vagina upon penetration. It can be compared to shutting your eye if someone tries to stick something in it. It’s a reflex, a physical reaction and not one that you have any direct control over. Most of the time it results in penetration, whether that’s a finger, a cotton bud, a speculum or a penis, being impossible and/or incredibly painful.

    The pelvic examination where my gynaecologist noticed I had vaginismus was painful and uncomfortable, more so than normal. When he said that I had vaginismus I was surprised because I don’t think it’s something I’ve regularly experienced during sex. I can think of one, maybe two occasions where I now think “oh, is that what was happening there?” It’s probably also relevant to note than this was nine months after I stopped having sex, for a variety of reasons, including the fact my deep dyspareunia (sex that hurts deep inside) was too much to handle, physically and otherwise.

    This means I developed vaginismus after having had normal and healthy (sort of) penetrative sex in the past. On Friday, I learnt that there’s a word for this too – “secondary vaginismus”. Many who suffer from vaginismus have never been able to endure let alone enjoy penetration, going overdue for pap smears and not being able to use tampons – this is primary vaginismus.

    My gynae gave me the news and said I would need therapy, physio and maybe anti-depressants. In reality he only referred me for therapy, which I started last week after a four month wait. I’m still not having sex but I have had the displeasure of noticing vaginismus on my own for the first time. Why? Menstrual cups! Just when I thought I had mastered them, something bloody well changed. There I was, cup in hand and sort of in vagina. As I tried to get it in place I experienced that horrendous, breathtaking pain for the first time since I last had an internal ultrasound or sex. I immediately removed the cup, steadied myself and caught my breath. When I tried again, lo-and-behold my vagina was closed for business. Rock solid and painful, nothing was getting in there. So it was nickers down, on the loo with a menstrual cup in one hand that I had my first personal encounter with vaginismus.

    Like I said, I have only just started counselling, so I’m at the beginning of a weird “journey” to discover why my body is doing this and how I can stop it, but I personally think that what I’m displaying is “harm avoidance behaviour”. My vagina is closing to prevent further pain inside – it’s quite clever really. There are of course other reasons it could be happening, from the whiplash I’ve experienced from surgery to ultrasounds (all of which have involved something entering my poor vagina) to something I haven’t even realised yet. It does add a further complication to my situation though. As my GP(s) and I concentrate on finding a solution to the internal pain worsened by penetrative sex, I now have to deal with the very real possibility that if and when I next try to have sex, it might not be able to happen. Man, that’s piling a lot of pressure on any future relationships I may have!

    I am lucky in so many ways. My vaginismus is secondary, meaning I know that sex can be a positive experience and that my vagina is, or at least once was, capable of opening. My vaginismus being secondary also means that I have a definitive time span in which to search for what changed to trigger my vaginismus. My vaginismus is apparently sporadic, or it only happens when there’s serious internal pain, meaning that most of the time I can use menstrual cups – tampons pose something of a different challenge, however. It’s likely that my vaginismus will be triggered by sex, but since I’m not currently dating or having sex it’s not a problem I have to deal with at the moment. I have time.

    On Friday I attended the Vaginismus Network’s first meet up in London. I didn’t know what to expect when I walked into the Sh! Women’s Erotic Emporium, but what I found was a room full to the brim with brilliant women who happened to have vaginismus. For most people there, including me, it was their first time meeting others with vaginismus. What was really empowering about the event was that as united we were with the spasming of our vaginas, everyone was completely unique in their experience, not only of the condition but of life, work and relationships. Vaginismus can affect anyone with a vagina, it holds no prejudices. For some it’s easy to pin point what causes vaginismus, for others it’s easy to speculate (like me) and for a few there’s literally no obvious reason why it’s happening, which can make recovery all the more tedious and complicated. Founders Lisa and Kat have created something incredible. As you know, I attend my fair share of female health related events and talks, but this was different. It was like being at the start of a revolution. Some of the ideas being spitballed at the event could be game-changing. It’s certainly spurred me on with that “secret” project I’ve been working on lately.

    In my very limited experience with vaginismus, the impression I’ve so far got from discussions about it (with people who have no experience of the condition or even having a vagina) is that it’s a case of women needing to relax, to lighten up or to be less uptight. Holy moly it felt good to bitch about those judgements with people who really got it. And the truth is, now that a few of us know that we’re not alone in our thoughts on vaginismus, we know that we have to go out and talk about it – otherwise no one is ever going to understand, let alone start researching the damn thing. Friday night saw a barrier come down, so while our vaginas might not want to open, now at least we can open our mouths to talk about vaginismus.

    My experience is new and manageable for the time being, but for many of the people I met on Friday, this is not the case. I am so grateful to have found a group like the Vaginismus Network so early on, imagine what could change if the same was true for everyone? A huge thank you to Lisa, Kat, the inspirational and hilarious psychosexual therapist Sarah Berry and the Sh! Women’s Erotic Emporium for creating such a safe, supportive and fun environment – you’ve already made a difference bigger than you know. Keep an eye on the Vaginismus Network – it’s one to watch for sure.