Spectre of the Big C

Another day, another health scare

The last two years have been the most challenging of my life. I faced the breakdown of a long-term relationship, three months of homelessness, moving to a new town and rebuilding my social life from the ground up. By the time Summer 2019 came to an end I was utterly wrung out, but I felt like I’d finally come through it all. I had settled into my new home, my precious dog (my best friend) was on the mend, and I was pain-free for the first time in a decade.

It seemed like everything was finally starting to improve. Then I got a letter in the post informing me that I was due my next smear test. For those of you outside the UK, let me explain that the NHS offers free smear tests every three years for women over 25. 

I actually had my first smear test before 25, as it was one of the tests I had done when looking for a diagnosis for my pain. My first smear test was a fucking disaster – I kicked a nurse. Let me explain – I didn’t do it on purpose! I was about 20, it was at my GP surgery and it was in the first couple of years of my pain. I tried to explain to the nurse administering the test that I had vulval and vaginal pain, and that I had a lot of anxiety around penetration, but I think she wrote me off as just another anxious young woman. She chose a regular-sized[1] metal[2] speculum and didn’t bother to apply lubricant before trying to insert it forcefully. I immediately screamed and my legs kicked out in reflex. I was hysterical, she was shouting, and it didn’t calm down until an older member of staff came in to take over. I don’t remember if she was a GP or a senior nurse but she dismissed the other woman and calmed me down enough that we were able to try again with a smaller, plastic speculum. 

I was relieved to get it over with, but when the results came back all clear a few weeks later I was actually a little disappointed. It sounds crazy, but remember that I had already been in pain for a couple of years at this point and I wanted to know what was wrong with me. I was desperate for a diagnosis, and it was frustrating to find another dead-end. 

My second smear test was less of a disaster. It was six years later and I was at an appointment with a specialist at the pain clinic. The specialist looked through my notes and noticed that I was overdue for a smear. I laughed nervously and told her that I’d been avoiding it because my last one had been such a production, but made vague promises that I’d ‘get around to it’. Then my boyfriend chipped in with “Why don’t you get it done now, while you’re here?”. 

The specialist smiled enthusiastically and said that was a great idea! I stared at him open-mouthed then burst into tears. It was an immediate panic attack. I was shaking, hyperventilating, the whole thing. This time, my care professionals could not have been more supportive. I was given amitriptyline to take the edge off, gas and air and lidocaine, which is a topical anaesthetic. My care practitioner squeezed my hand and helped me breathe through it. It hardly hurt, and I didn’t have any of the traumatic flashbacks that I’d had the first time around. 

Photo by Max van den Oetelaar on Unsplash

So, it’s 2019, I’ve had the most challenging 18 months ever, and I get a letter from the NHS to say it’s time for my smear test. Great [sarcasm]. I’ve been discharged from the pain clinic where I was getting treatment, and I’ve moved house, so I’m going to have to get this done at my new GP practice. My experience so far has been 50/50 great and awful, so it’s a coin flip this time. 

I decide to be a big girl about it and make the appointment – I’ve got through a lot, I can do this. I make an appointment with the nurse at my doctor’s office. I walk into my appointment determined to advocate for myself. I previously relied on my boyfriend, as older men get taken more seriously, but now I have to represent myself. I’m immensely relieved when my the nurse immediately takes my pain seriously. She is warm, kind, and understanding, and the procedure goes without a hitch; I hardly feel a thing.

I’m told that it will take about 14 days to receive my results in the post; I get them in 10. The letter informs me that my smear test showed abnormal changes in the cells in my cervix, and I need to go back to the doctor for a colposcopy to further investigate. This procedure has already been booked for me, so all I have to do is turn up in two weeks. So far, so easy. I am determined not to worry about this. Lots of women have abnormal smear results – that’s why they do the test, after all, to find these things. My sister had an abnormal smear result last year – she had a laser procedure to remove them and was fine. An aunt had the same. I remind myself of these facts while I wait. 

I book the day of the procedure off work. I don’t necessarily need to – most women would be fine – but I don’t know how my body will react to this procedure and sod going back into the office afterwards. I am 100% planning to reward myself with chocolate and wine when this is all over. 

I hit the jackpot with my new GP; he genuinely listens to my concerns about this procedure and takes me seriously. He reassures me that he’s going to use a small plastic speculum and offers me gas and air. I’ve been pain-free for a couple of months at this point so I decline; I think I won’t need it and, miraculously, I don’t. My GP tells me to cough hard as he takes the biopsy – I honestly don’t even feel it but have a little anxiety-cry anyway. A nurse squeezes my hand and offers me a tissue.

Unfortunately, my GP has spotted something not quite right.

“You have adenomyosis.” He tells me. “The lining of your uterus is growing outside of your vagina. It’s not a big problem, but it can cause heavy periods and painful sex.”

What?! I’m stunned. Is this new? Has this been there the whole time? I have had so many examinations over the last ten years. How the hell is this the first time I am hearing about this?! [3]

He continues: “It’s easy to fix, I have a little tool that will cauterise it away. We can do that now.” 

My anxiety levels skyrocket and my heart leaps into my mouth. The nurse squeezes my hand while I have another little cry, and they both wait for me to compose myself before proceeding. It’s ok, I can do this. I feel seen, and heard, and it makes things easier. The cauterisation is a different matter – that hurts and I really cry then. The nurse gives me a hug when it’s all over. I’m told I can go home, and I’ll get the results of the biopsy in a few weeks. 

My GP explains that if the results come back abnormal, I’ll have to have another procedure to remove them. This is normally an out-patient procedure, meaning it is delivered under local anaesthetic and won’t require a hospital stay. However, because of my history, he says that he’ll perform it under a general anaesthetic instead. I should still be in and out of the hospital on the same day if it comes to that. It probably won’t come to that. 

I’m told not to worry; abnormal results are common. It doesn’t mean I have cancer.

A few weeks go by in a state of deliberate nonchalance – I am refusing to get wound up about this. My anxiety simmers quietly in the back of my brain but I won’t acknowledge it.  Everything. Will. Be. Fine. Eventually, a letter arrives in the post. I take a deep breath before I open it. 

Abnormal. CIN 3 – there’s a high chance the cells will become cancerous and treatment to remove them is recommended. 

Fuck. Okay. That’s not a big deal. My sister had the same. She had a bit of laser and *poof* – all better. 

My letter explains that I won’t be having laser. Instead, my abnormal cells are going to be removed via a large loop excision: a thin wire loop will be heated with electricity and used to excise the affected area. The letter takes pains to explain that this is not cancer. It’s just abnormal cells that might become cancer if left long enough. I’m advised to take the day off work. I book off two: Thursday and Friday. Fuck it, this deserves a long recuperative weekend. The letter also explains what to expect from my surgery and recovery, all the do’s and don’ts. Top of the list? No sex for four weeks post-op.

For fuck’s sake. I know this shouldn’t be the top of my consideration list, but I spent most of the last decade unable to have sex and I’ve only just got my mojo back. I *still* feel like I’m making up for lost time, and a small part of my brain is worried that the trauma of my operation might bring my pain back. 

I call my mum and explain what’s been going on. She scolds me gently for not mentioning it sooner. I explain that I didn’t want to worry her – I still don’t want to worry her. It will be fine. I wait four weeks for the surgery – not bad at all, really. I spend the whole time deliberately not worrying. It will be fine. It will be fine. It’s a mantra: I’ve been through worse.

My boyfriend comes to see me the night before and drives me to the hospital on the day of my operation. We have to get there for 7:30 am. Eurgh. He comes with me to the waiting room, holds my bag while I go pee into a plastic cup (they have to make sure I’m not pregnant), and for an hour he’s the only man there in a room full of women. We make a little small talk, but there’s no privacy in the waiting room so mostly we each read a book. I’m the first person up for surgery. I get taken into a little office for a chat with the doctor, who explains the procedure again and makes sure I understand what’s going on, then I get taken to a bed. I get changed into the awful hospital gown, and boyfriend keeps me laughing, cracking jokes as he ties it up for me. We both giggle when the nurse arrives with horrendous green compression stockings that I have to put on to prevent deep vein thrombosis. I get told I’ll have to take them home with me after the surgery and we both laugh – at least I’m getting some free lingerie!

I’m scared as they wheel me away for the surgery – this is only the second time in my life I’m having a general anaesthetic, and the last time I reacted badly to it and got sick. But my doctor is there to greet me, and the anaesthetician makes a joke about my tattoos to distract me. 

When I wake up, it’s a couple of hours later. Boyfriend is waiting by my bedside and reassures me that he went home and walked the dog while I was out so that I don’t worry. It takes a while for me to be discharged. They have to wait for me to get up and go to the toilet, and I need to eat. I can’t remember now what lunch was, but they brought me coffee and that was the important thing.  It’s about 5 pm by the time I’m discharged. Boyfriend takes me home and makes me comfy, and we watch some crap TV. I’m supposed to have someone with me for 24 hours after surgery, but he’s got his motorbike booked in for an MOT early the next morning so he doesn’t stay the night. I reassure him that I feel fine, and he makes sure I have everything I need before he goes. I take some ibuprofen and have an early night.  

The post-op bleeding lasts 3 weeks. Three. Fucking. Weeks. I haven’t had a period in years and I seriously resent this one. The no-sex restriction lasts a little less than two weeks before I crack. I feel a little guilty about that, but not much. I’m hardly bleeding by that point and honestly, I’ve waited long enough for good sex. 

About a week after the bleeding stops, I get another letter in the post. The excised cells were examined again, and are categorically not cancerous. All clear. I’m advised to return for another smear test in 12 months, rather than the average 3 years, but aside from that, I’m good to go.

It’s a relief, that’s for sure. Definitely not cancer, just another little bit of weirdness from my body to remind me not to get too comfortable. Clearly, my body felt that 2019 just hadn’t quite been interesting enough. 

That being said, I strongly advise every woman to get regular smear checks. Neglecting your cervical health can have huge consequences. Even if, like me, you have reasons to be anxious about the procedure, it’s still important. Be prepared to be your own advocate, be prepared to ask for help or consideration if you need it, but please please please, make the appointment. 

[1] I didn’t even know they were available in smaller sizes.
[2] They’re also available in plastic, which is softer and less invasive. 
[3] What with one thing and another, I never followed up with my GP about this. I still don’t know if it’s something that I had the whole time, or something that had developed since my last check up. I’m just assuming that the cauterisation process dealt with it and I don’t need to do anything further.

Published by QuirkyCnt

I've spent 10 years living with chronic pelvic pain. Vulvodynia, vestibulodynia, vaginismus - I've got the set. I've even got lichen planus, which is an autoimmune disorder, and adenomyosis. This blog documents my experience with chronic pain, sexual dysfunction and all the ways I've tried to manage it. Expect fetish clubs, polygamy and explicit conversations about sex and sexuality.

3 thoughts on “Spectre of the Big C

  1. I’m sorry you’ve gone through this. It must’ve been very scary. I hope you don’t mind me commenting. I can’t bear to see another woman in pain and no one ever talks openly about all this. I recommend you research Adenomyosis. Adenomyosis is when endometrium-like cells grow into the wall of the uterus causing intense pain and often painful sex. The very fact the doc says he saw it outside your uterus is just not possible. Sadly it’s likely you have endometriosis, (or both! 😕) which is similar and is visible outside the uterus as it grows and bleeds every month between organs, sticking them together (simplistic explanation). Neither have a cure. Although Adenomyosis in its nature is ‘cured’ by a hysterectomy (removal of uterus), but endometriosis has no cure. It can cause uti like symptoms, pain (either constant or monthly and/or during sex) infertility, cysts, bowel problems, links to immune system problems… There’s quite a list. Gold standard for a diagnosis is a laparoscopy hence why it can take 7-10 years to get a diagnosis in the U.K. and often GPS know less than they should about it. (Even some general gynaecologists have a pretty poor knowledge too). A good place to check out more info is here…


    1. Hi Stacey, thanks for your comment. I’ve spent the last ten years in and out of hospitals because of my chronic pain condition so it didn’t really register as that scary. I haven’t been able to get a laparoscopy to look for endo, but I’m aware it could be a possibility. I have got IBS and I take the combination pill to avoid having periods because I found them debilitating, so I have a few if the symptoms. I should follow up about it really but now that my lichen planus is in remission I dont have much acute pain so I haven’t got around to pursuing it. It’s exhausting to pursue treatment for chronic illnesses. That’s one of the reasons I started this blog, because so many women live with conditions like mine but it isn’t talked about much.


  2. I only got a diagnosis just before my third ivf try. Endo had caused kissing ovaries, endometriomas and adhesions. I had a lap last year that became a laparotomy (not fun). After third ivf failed, i had another laparoscopy where they cut my tubes due to hydrosalpinx. Recent 4th ivf just failed and my cysts are back. Endo screws up everything.
    I’m glad the pill is helping you (although if you do have Adenomyosis and/or endometriosis, please note that it thrives on oestrogen) Annoyingly I also got similar symptoms to lichen planus between all this too but it was mostly when forced through ’man made’ menopause and the drop off of oestrogen caused it. I have to be on progestin only pill due to my high bp and to try to halt the endo. I know how exhausting it is, sometimes to just get a flippin diagnosis. Like I say, that page on FB has lots of files and ears to listen if you want someone to talk to. x


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