Category: #Periodically

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.

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’.

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.

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.

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.

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.

For now though: walkies, reading and puppy snugs!

August 22, 2017
‘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.

August 14, 2017
A tale of two pills #Periodically 8

This post is a long time coming. I could’ve written it over a year ago, before my uterus was even giving me gip. I’ve hesitated because I think it’s a dangerous subject. There is no doubt that hormonal contraception has offered billions of females around the world more control over their bodies than our predecessors could have ever hoped for. When women are free to decide when they have children, equality is a little a closer to reach. Sex and pregnancy no longer hold the weight, threat and disruption they once did and for that we must be incredibly grateful for all the benefits hormonal contraception offers human kind.

However, yep, there it is. However, it seems hormonal contraception is only just beginning to show what else it is capable of, either that or people taking it are only just starting to talk about it. For most people, hormonal contraception works really well. Problems with it are usually very individual and I don’t think we’re told enough what signs to look for to know if it’s working with us or against us. So here’s my story. It’s not a story intended to put anyone off of hormonal contraception, it’s just a story about a couple of things that happened to happen to me.

I went on the pill in summer 2013. I was put on Rigevidon, a combined oral contraceptive pill. I did notice at the time that I was the only one of my friends on this pink packaged pill, they were all on Microgynon (the green one). It was great. I had a monthly bleed MONTHLY for the first time in my life, I could skip a period if I wanted to and my acne improved. Plus it was contraception, all excellent things in my book.

In April 2014, I went to my university health centre to get a new prescription of Rigevidon, simple stuff. Unlike my doctors at home when I had first got the pill, the nurse at the UHC weighed me, took my blood pressure and asked me some questions. When she asked ‘have you had any migraines?’ I said no and then yes. I had had my first ever migraine a few weeks ago, and my second shortly after. I remembered it well because I took some ibuprofen as I had a headache, but then when it didn’t go away I left my friends playing Mario Kart to go and lie down in my dark room. It got better with sleep, I told the nurse. She frowned, and then asked ‘have you had any leg or chest pain?’ I laughed, funny she should ask. My flatmates and I had been on Web MD last week, diagnosing me with a pulmonary embolism because of growing pain like leg aches and occasional sharp chest pain, all in good humour though.

“Right, I’m afraid I can’t give you Rigevidon,” she said. Shit. I hadn’t realised then the gravity my answers to the questions had held. I was expressing many of the symptoms of deep vein thrombosis (DVT), often associated with Rigevidon and other contraceptive pills. She thought about putting me on some other combined pills that contained higher levels of oestrogen but my great aunt and my dad both had breast cancer at the time, she didn’t recommend increasing my risk of that if it was already coming from both my maternal and paternal genealogy.

So she decided that I should go on Cerelle, a progesterone only pill – POP, also known as the mini pill. I had a lot of questions about POP but she just told me to expect my periods to get a little funky, to take it everyday with no off week and be on my way. This is the part of the story where I usually say, ‘here’s where shit got fucked up’. But actually Rigevidon had already messed with my body more than it should’ve been allowed to, if they had asked me more questions at the very beginning they would have learnt that both my mum and sister were taken off of pills for signs of DVT – that alone should have been reason enough for it never to have gone near me. Since then, most of my friends on Microgynon (I’ve never heard a complain about micro) have been switched to Rigevidon and I’ve seen increasing forum discussions and articles about people being switched and confronting DVT when they do. Now call me a conspiracy theorist, but I can’t help but wonder if Rigevidon is much cheaper than Microgynon and that the NHS has decided that Rigevidon is more affordable, regardless of the risks it so clearly poses to some people. #ToryBritain

So I prepared for my periods to get funky, and boy did they. In the first eight weeks I had six separate periods. Fun. After that, I didn’t bleed for over a year. I got used to it at first and it seemed fine but as time went on it was like PMS was beginning to accumulate. 2014 was a pretty bad time for me anyway, but I felt like something was pushing me to miserable. What didn’t help was that my acne got worse, I put on weight and bloated in all the best places, my face, my boobs and my stomach.

There was something else too. Something that is most definitely TMI, an overshare. But given how often I see it appear as a concern for fellow Clue Ambassadors, I’m saying, once again, to hell with TMI. POP took away my ability to self lubricate. At the time I was in a fast declining relationship, and I took it as a sign that I was no longer attracted to my then boyfriend. That might have been a part truth but I didn’t realise the full effect POP had had on my body until I stopped taking it. Crying to my nurse I begged her to give me a reason to come off. Cruelly, she said ‘there’s no reason. You don’t need to have a period’. It was in her interest to keep as many female students on the pill so the UHC didn’t have to deal with student pregnancies, I appreciate that. But like I explained to her, I was getting more and more hormonal by the day. I felt like I had been pre-menstrual for eight months, I needed some release.

She said no on two occasions but on the third I just decided to stop taking the pill one day on holiday. A month later I started to bleed and then I had a year of sheer irregularity and then discovered that something else in my reproductive system had floated up shit creek. But I remember coming off of POP vividly. I dropped two cup sizes almost immediately, my face dropped something too. And then, I discovered myself once again having the ability to self lubricate. I had ended the relationship by this point but it was clear to me that this was happening due to a total shift in my hormones. What’s more, now this could have just been the euphoria of coming off of POP talking, but I remember thinking that I was smelling smells that I hadn’t smelt since I was 17, before I was on the pill. I have no idea if that’s a thing, but it was to me.

So now I’m off the pill and fortunately my inability to have, or at least to enjoy, sex is acting as a pretty sturdy contraceptive. I did enquire about getting an IUD but surprise, surprise my cervix is in the wrong place so I can’t. It’s likely that whether I have endometriosis or not, Dr M will suggest I go back on the pill. Whatever pill he suggests, I will deal with that decision at the time. I find it quite a traumatising prospect, having to go back on, but it might be my only option for the time being.

August 7, 2017