Tag: diagonsis

  • “Can I examine you?” #Periodically 18

    “Can I examine you?” #Periodically 18

    Covering all bases here, Happy 2018 #Periodically readers! We left off with me on Mefanamic Acid and iron tablets to help with period pain and heavy bleeding, for more details on that read: #Periodically 17. Today however, I have news, good and bad, a diagnosis and a potential solution, but it’s all rather bitter sweet.

    TW/Disclaimer: I briefly touch upon mental health in this blog and as serious as I consider discussions on mental health to be, I do approach the subject with a little bit of humour. Making light of something isn’t always mockery, sometimes it’s a brilliant coping mechanism and an even better way to banish demons – even those of the vaginal kind. 

    I was going to delve right in and give you the gossip from my gynae appointment last week, but having flicked through my December diary entries, I realise there’s a whole load of crap that needs to come before that, feel free to skip ahead. Warning, moaning ahead.

    Just over a month ago we had some snow here in Essex. It only lasted a day but for about four seconds of this particular snow day, I pulled my twenty-seven year old sister two metres across the garden in a sled. The next morning I woke with an excruciating backache. Back pain is something I’ve dealt with for years, especially when on my period, but this was something else. Assuming it was because of the spontaneous sled pulling, I dosed up on ibuprofen and took it easy. A lot of the pain was intensified to my lower back and got particularly bad at night when I was sitting or lying down, at which point it was accompanied by some delightful shooting, tugging and tearing pains across my pelvic area, front and back.

    After ten days of my moaning being even more annoying for my family than normal, I went to the doctors to check this wasn’t a womb-related pain. The delightful new doctor I had the pleasure of seeing basically laughed at me for expecting the pain to go away so quickly, and when I explained the fact that “hey, I’m in a lot of pain most of the time anyway and this is a bit much and I think I’m going to lose my mind” he did a nice, patronising head tilt and said, “so how long have you had this tummy ache?” Have you ever wanted to flick someone in the face, Rachel and Monica style?giphy (4)

    The pain was quickly accompanied by some intense nausea, which I now believe was caused by the iron tablets. I had some really disturbing nights’ sleep for a while in December, so I stopped taking them for a couple of days and immediately felt better. Since I’ve been back on them it’s been OK, so I think it was just an acclimatisation thing. When the doctor couldn’t do anything for my back my mum insisted I got a sports massage, my first since the good ol’ marathon days. I don’t actually think this helped at all, but it turns out the masseur happened to have endometriosis, PCOS and a one year-old, so it served as an enlightening therapy session, if only emotional. The backache went away while I was on my period curiously enough, it’s back now, but honestly I think I’ve gotten used to it. I am wondering if perhaps it has been caused by the fact I probably carry myself awkwardly because of the pelvic pain and it’s therefore referred elsewhere, but the fact it hasn’t healed like a normal muscle injury does leave me wondering if it is just the next phase of Project Pelvic Pain.

    So I started 2018 with my two favourite things; a period and a visit to the gynaecologist – yahoo, lucky me! Going into the appointment I had two things in mind: a) I hope its a female gynae and b) I think I’m going to come out with a prescription for the pill. Well the gynae was a man so that was an excellent start. I’ve never been bothered about having a male doctor for “intimate” situations, it’s more that in Swansea Dr M asked me what was wrong and then interrupted me every time I spoke – all that resulted in was fruitless surgery and a dodgy belly button. I wanted things to be different this time. Unfortunately, things started the same way. He asked me what my symptoms were and the moment I opened my mouth he just started talking over me and before I knew it he was saying, “so we need to get some hormones in you” and I just said “NO.” Happily, he shut up and listened while I explained that this was no longer just a situation of bad period pain. I told him that the pain and the repercussions of it were creeping in my life in serious and unwelcome ways and he finally said the words I’ve always wanted to hear: “can I examine you?” For avid #Periodically readers, you’ll know this is a momentous moment. Read: Why didn’t the gynae look at my vagina? to see why.

    This was horribly awkward because I was on my period but also because the chaperone, who is there to make me feel comfortable, got waaaay too close while I was changing. But it turns out, the exam was uncomfortable for another reason.

    Reclothed and a little lubey, I sat back down at his desk and he immediately said “OK you have a superficial problem too, it’s not just your internal system”. I didn’t even care what it was at this point, I just wanted to cry about the fact that all it took was a 30 second exam for someone to finally be like “oh yeah, there’s a problem”. He went on to explain that some of my pain, specifically my dyspareunia (pain during sex) is being caused by the uncontrolled clenching of my vagina upon penetration. Yep, I just wrote that #sharingiscaring. This has a name, vaginismus, sexy right? So he starts listing the treatments for vaginismus; “definitely counselling, probably physio and possibly anti-depressants”. I should have been fairly concerned at this point, but instead, my mind immediately went to Charlotte in Sex and the City… 

    I’m not surprised, given the difficulty of pelvic examinations in the past, but I am not exactly comforted by this diagnosis as my dyspareunia is described as deep dyspareunia, meaning the pain I experience is more internal than my vagina, it is “deep”. To me it feels a bit like a chicken or the egg situation. Did I always have vaginismus, or did I get vaginismus because my vagina is like “wow don’t go in there, it’s a mess”. My instinct is the latter, but I guess we’ll find out in therapy! My gynae’s referred solutions have to be arranged by my GP and so it’s probably going to take a while, but this feels like progress, albeit it disheartening, worrying and a little sad.

    The other result of the gynae appointment was that I now have, as predicted, a pill prescription. I expressed all my concerns, and other doctors’ concerns regarding DVT and breast cancer, but the gynae was confident that going on the pill will not only help with my symptoms, but that it has the potential to cure them. We also had a discussion about what pill I am *happy* to go on. It could of course be that if I come off the pill in two years everything will come back, and it could also being that going on the pill will do sod all to help me, but at this point it’s worth a shot. I won’t be starting the pill for a few weeks, so I’ll write a blog soon about my thoughts and feelings about going back on – as you can imagine, there are a lot.

    Sorry this was a long one, but me and my depressed vagina needed some processing time before writing this. There’ll be more, but in the mean time I’m going to go and learn a little more about vaginismus, how I feel about going back on the pill and maybe I’ll even re-read Naomi Wolf’s chapter about the Vagina-Brain connection – I feel like I’m going to need it more than ever.

    How are we feeling about the new #Periodically picture? Yay, nay?

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  • Good news, bad news & speculation #Periodically 10

    Good news, bad news & speculation #Periodically 10

    Know that feeling of relief when you worry about a worst case scenario but when push comes to shove everything is OK? I do, I had it for about half an hour after my surgery, but that was all.

    Last week my lovely mum managed to get me to Swansea, operated on and back to Essex in 27 hours. It was my last rendez-vous with the Welsh NHS system (that I already miss) and it was a diagnostic laparoscopy – keyhole surgery to look for signs of endometriosis on my uterus. My biggest fear, as I discussed last week, was that the doctors would tell me that there was ‘nothing’ wrong.

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    A whole bay to myself

    We arrived at the hospital bright and early at 7:30am and they promptly told me I was first on the list of two – thank you summer holidays! I was actually relieved to find myself in pain on this particular morning. By my logic, if it was causing me pain then they would be able to see whatever was causing it in action. My anaesthetist Dr G and his student came to see me first – they were super friendly and informative throughout the whole day. Then Dr M’s registrar, so my second gynae, who I hadn’t met before showed up and we rewrote my consent form and ran through what was going to happen. They would go in for a look, if there was nothing I would only have the one incision, if there was anything wrong it could be up to four. Then I got to see Dr M who would be performing the laparoscopy. He is not a man of many words, our second and final meeting was brief.

    Gowned, naked and exposed I was wheeled down to the prep room where people stuck various things to me and in me while asking what I write about – “female health, actually!” Dr G was hosting an A level student and so everything was explained above me as they administered painkillers and then anaesthetic to my cannula, before Dr G said “see you in half an hour – or an hour if we find anything! Think of nice dreams now and you’ll wake up to nice things’.

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    Gowned, naked, exposed and HOPEFUL

    ‘OK’ I thought, ‘I’ll dream of a diagnosis…’

    Opening my eyes in recovery I immediately clocked (literally) that it had been over an hour. First shot of relief. The nurse was asking me questions but I had zero interest in them so I immediately asked ‘how many holes?’ Understandably confused she asked what I meant, to which I very eloquently clarified ‘how many pokey holes?’ while pointing at my belly. She lifted my blanket and gown and confirmed, ‘two pokey holes’. Second shot of relief. ‘Looks like you’ve had a couple of cysts removed, love’ were her next words. TWELVE SHOTS OF RELIEF.

    Cysts! I can handle cysts. I’ve tested negative for polycystic ovaries so if it’s just a couple of cysts that might rectify everything. This was the best case scenario! Hurrah! Contented with relief I now answered her actual questions. Yes, I did feel sick, but only because I’d had a breathing aid down my throat. Yes, I would like some pain relief. No, I didn’t have a headache. She then handed me and my file to my ward manager Viv with the words ‘she’s had a cyst removed’. Hmm, ‘cyst’ singular this time. First shot of doubt.

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    Cysts? No cysts? Who cares when you’re this good looking?

    Wheeled back to my mum I said ‘cyst! Or cysts! I’m not sure’. Then it was my mums turn for relief, she also knew that in this case no news was not necessarily good news. She called my dad and let my sisters know what was going on while we waited for the gynaes to come and talk to us. I was in a fair bit of pain at this point, but it seemed, it was worth it. And then in marched the gynaecological registrar, no Dr M. I smiled at him, waiting for confirmation that I wasn’t insane. ‘So the surgery all went well, we didn’t find any endometriosis. There was a 2cm cyst but obviously that’s just a normal ovulation cyst. So yeah, good news really because nothing’s wrong, bad news because we don’t know what’s causing your pain’.

    Oh.

    So I didn’t have any cysts removed. But I did have a cyst, an ovulation cyst. I’m ovulating. I could’ve bloody told them that from Clue which had already notified me of that very fact. I just frowned at my mum while she asked actual questions. I was, am, gutted. ‘Whatever it is, it’s not gynaecological,’ he informed us. Apparently, after everything, my uterus is a ‘nice and healthy looking uterus’. Even my ovaries are in the right place.

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    Alive, but unimpressed

    Worried about my risk of clots on the drive back to Essex, Dr G ordered a blood thinner, but otherwise, a few more painkillers and lunch and we were on the road by 2pm. I love lasagne and rice pudding, but they only marginally cheered me up.

    A few days on, I’ve had time to process and I am realising how grateful I should be that whatever the problem is, it doesn’t lie in my reproductive health. Maybe whatever is wrong will be more treatable than the unknown entity of endo. But I am equally disillusioned with the idea of having to start this entire process all over again, in Essex of all places where GP appointments are much harder to come by than in Swansea. #ToryBritain.

    It is difficult to go through such an invasive procedure and to be none the wiser afterwards. Endometriosis needs an easier diagnosis method. I knew that before, but if there had been a less invasive way to rule endo out of the equation, it would have saved a lot of heartache. Not receiving a diagnosis initially felt like I needed to just bounce back, having wasted everyone’s time. But I have had two pokey holes poked, and the hope being taken as quickly as it was given has left me with a bit of emotional whiplash. Besides, the surgery didn’t reveal nothing. I know now that this pain isn’t gynaecological and that my reproductive health is in fact, healthy – though it would be nice if I could actually use it. What pain I do have is calmed down by paracetamol but is noticeably worse in the evenings.

    Physical recovery wise, I’m starting to feel good. I’m sleepy, moany and achey but I’m walking around and irritating my family with little hindrance. During a diagnostic laparoscopy they fill your abdomen up with carbon dioxide, which has left for some interesting bloating. The wounds are seemingly healing well but the area is very sore and my belly button no longer looks like my belly button. It looks a bit like they’ve untied it and then retied it differently. I’ve had some vaginal bleeding but nothing major. I was shocked back into sanitary towel usage when I discovered a pad literally wedged between my legs after surgery. They assure me tampons and cups will be fine to use for my next period though.

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    Proof that they really fill and tie you up like a balloon…

    Chances are, if it’s not my womb then it’s probably my bladder or bowel. Already, my right side, where most of my ‘period/ovulation’ pain is focussed, has swollen and is much more painful than the left following the surgery, meaning I’m still very suspicious of the area. I daren’t speculate, especially since the registrar, who made a point of saying he would not speculate, proceeded to speculate far enough to suggest I might need to go gluten-free (The horror!) I have had a plethora of bladder issues from the age of two till eleven, that restarted around the age of eighteen, so I think we will first explore the bladder.

    What for this blog then, you ask? Well I think things are likely to get less menstrual (though who are we kidding, probably not). Whatever the problem is, it is either worsening or being worsened by my menstrual cycle so I don’t think we’re done there. But while we wait for hospitals, doctors, practices and two countries to sort their shit out transferring and referring me, I think it’s likely that these blogs might begin to take up the other meaning of Periodically – in that they will occur from time to time.

    Thank you everyone for the well wishes over the past couple of weeks. Even if it’s reluctant, I’m looking forward to exploring yet another part of my body in the hope of a future with a bit less pain.

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    For now though: walkies, reading and puppy snugs!

     

  • ‘Wait and see’ – Thoughts before diagnostic laparoscopy #Periodically 9

    ‘Wait and see’ – Thoughts before diagnostic laparoscopy #Periodically 9

    “Just wait and see,” my mum keeps telling me, anytime I speculate about what exactly is going on with my uterus. For a while it’s been a really annoying command. “I need to know now,” my brain disputes. But finally, it’s not long until the waiting is over and the seeing can begin.

    This week I have my long awaited diagnostic laparoscopy. For those who don’t know this is, or should be, simple keyhole surgery to determine if endometriosis is the cause of my pain and other issues. If there are any lesions (sticky bits of endometrium in the wrong place that can potentially bind organs together) they’ll remove what they can and then discuss possible treatments with me. A possible treatment, other than repeated surgery, is likely to be returning on the pill, an idea, you now know, I am not a massive fan of.

    Instead of going off on one of my usual tangents about how unfair it is that female health has been neglected, making common problems like endometriosis seem harsher in a world of medicinal advancement (still got it in there though, didn’t I?), I want to talk about what I worry is the most likely outcome of the surgery.

    “Nope, nothing wrong Ms Webb, off you pop!” The words I fear Dr M is going to say to me after the surgery have started to give me nightmares. I know it is a reality for so many women seeking enlightenment about their reproductive health but I am terrified that I’ll be joining the gang. There’s not a conspiracy here but there is a lack of understanding. When I’ve discussed pain during sex Dr H has been great but other doctors and nurses who I’ve mentioned it to, while also mentioning my lack of desire to return on the pill, say nothing. But in the nothing, I can’t help getting a vibe that says “shut your legs, harlot”. I think it’s highly unlikely, and unfair of me to assume, that they are actually thinking or suggesting this, but once all other options have been exhausted there’s not much left except abstinence from penetrative sex. They know this and so do I. It’s become an elephant in the room. While many people tell you to anticipate descending towards a new chastity at the very end of your life, it’s not something I want to be facing at twenty-two.

    So call me disturbed, but I really hope that after the surgery I hear that, in fact, there is something wrong with me (ideally something that they’ve fixed). At least if I have a condition with a name, I won’t feel like it’s all in my head and I’ll have somewhere to direct my frustration.

    But until then, let’s just wait and see.