A little bit of a personal post today, as it’s the start of Cervical Cancer Prevention Week, a cause which has become very close to my heart over the past year.
I’ve not been one to shy away from cervical screenings – aka smear tests – in the past but, what with the pandemic and all the lockdowns, my latest screening (in mid-March 2022) probably ended up being just over a year late. I didn’t think anything of it and had absolutely no concerns when I went into my local GPs for this routine examination, one I’ve already had four times before and had never experienced any real discomfort with – besides the slight embarrassment and oddity of the experience!
Cervical Screenings
I know some people are incredibly worried about cervical screenings – particularly their first when you don’t know what to expect – and I think the most important thing is to build a rapport with your nurse if you can; let them know you’re concerned and allow them to gently guide you. Being calm and relaxed helps immensely – which I know can be a difficult thing when you’re concerned about what may happen. In my experience my nurses have always been very kind, and transparent about exactly what they are doing, talking to me throughout the procedure and checking that I’m as comfortable as can be. For a cervical screening you will need to undress from the waist down and are usually asked to lie on your back with your legs bent up, feet on the table and your knees apart. I’ve always found it a lot easier to wear a dress or a skirt to appointments, so you can just hitch it up and all that needs to be removed is your underwear.
To explain the examination, I’ve pulled the below information from the Jo’s Trust website, to ensure my information is as accurate as possible:
Your nurse will let you know when the test is about to start. First, they gently put a new, clean speculum into your vagina. A speculum is usually a plastic cylinder with a round end – sometimes a metal speculum is used. The speculum is the part that some people find uncomfortable. Once the speculum is inside your vagina, the nurse will gently open it so they can see your cervix. Then the nurse will use a small, soft brush to quickly take a sample of cells from your cervix. This may feel a bit strange, but should not be painful. The nurse will put your sample of cells into a small plastic container (vial) of liquid. The liquid preserves the cells so they can be sent to a lab for testing.
And that’s it! I would say that my experiences to date are pretty similar to those described above, and I’ve not personally experienced any pain, just a slight discomfort – although this will of course be dependent upon your own anatomy and personal comfort levels during the procedure. If you don’t typically feel discomfort during sex, and are happy using tampons during your period, then you shouldn’t feel any actual pain during a cervical screening – and should be free to go about your day as normal straight after, although it’s advisable to wear a sanitary pad or panty liner for the rest of the day, just in case you experience any residual spotting.
After that, you’ll likely completely forget about the procedure until your results arrive in the post – typically within 4 weeks, although I think mine took more like 6 weeks to come through (early 2022, when we were just beginning to transition out of severe Covid times)
Colposcopy
As I said, I’d pretty much forgotten about my cervical screening when the results landed on my doorstep in early May and was a little taken aback. I had recieved the results letter (detailing the discovery of abnormal cells in my cervix) and the letter from the hospital scheduling a colposcopy at the same time and had opened the hospital letter first, to much confusion – since I had no idea what a colposcopy actually was! Once I got my head around the situation though the first thing I did was turn to the internet to find out what on earth would happen during a colposcopy, which is one of the main reasons I’m sharing this post today, because I’m hoping it might hold the answers than someone in the same position just now might be looking for.
Again, I’ll share information from Jo’s Trust below to ensure I’m as accurate as possible in my explanation of the procedure, and then share my own personal experiences:
Colposcopy is an examination to take a closer look at your cervix. An expert, called a colposcopist, does the examination... which is used to both diagnose and treat cell changes (abnormal cells). If you need treatment, you may be diagnosed and treated during your first appointment, or be invited to a separate appointment for treatment. Like during cervical screening, your colposcopist will gently put a new, clean speculum into your vagina. A speculum is usually a plastic cylinder with a round end – sometimes a metal speculum is used. Your colposcopist will use a microscope with a light at the end to have a detailed look at your cervix. This is called a colposcope... which stays outside your body. Your colposcopist will usually put some liquid on your cervix, which helps show any areas where there are cell changes. Your colposcopist may then take a sample of tissue from your cervix. This biopsy only takes a small sample of tissue, so most people don’t have local anaesthetic. Your colposcopist will take between 1 to 3 biopsies to make sure they have enough tissue from different areas of the cervix, and then send the sample of tissue to a laboratory for testing.
Much like a cervical screening, my experience was pretty similar to that detailed above. The main difference being the fact I was a lot more nervous, having never had a colposcopy before, as well as having to go to an outpatient clinic at my local hospital for the examination – which naturally made it feel much bigger and much scarier. A hospital waiting room definitely feels much more nerve wracking than a GPs, especially coupled with the idea of ‘abnormal cells’ which naturally makes your mind go to places you don’t really want to explore.
Thankfully, the nurses at my local hospital made me feel calm and at ease right from the start because, of course, they are very used to people coming in with concerns and anxieties. The inital screening was very similar to the one I’d had at my GPs, except for the fact the hospital bed I was laying on came with stirrups so I felt a little more exposed and vulnerable with my legs akimbo during the exam! To be honest through, this position actually made the insertion of the speculum even easier and more comfortable for me, and the nurses were talking to me the whole time – general chit chat etc – which provided a great distraction from what was actually going on.
In some instances your colposcopist can tell that cell changes need treatment during your first colposcopy appointment; the most common of which is a large loop excision of the transformation zone (LLETZ), which is what I ended up needing.
Large loop excision of the transformation zone (LLETZ)
I’d been told beforehand that if a LLETZ procedure was required it would likely be done in the same appointment, so had been prepared for the possibility. I’d also been asked to bring a urine sample with me so they could do a pregnancy test beforehand, to make sure they could safely go ahead with the treatment on the day, if required.
Again, I’ll let the experts at Jo’s Trust explain exactly what a LLETZ procedure is before I continue:
Large loop excision of the transformation zone (LLETZ) is a type of surgery that removes a small part of the cervix. It can be used treat cervical cell changes (abnormal cells) or early stage cervical cancer, as well as to diagnose cervical cancer. It uses a thin wire loop with an electrical current to remove the affected area of the cervix. Your colposcopist will inject a local anaesthetic into your cervix... and you may also have a sticky pad put onto on your leg. This makes sure the electric current in the wire loop doesn’t burn you. Once your cervix is numb, your colposcopist uses the loop to remove the area of your cervix that has cancer cells. It is normal to notice a slight burning smell and hear a noise like a soft vacuum cleaner. The loop cuts the tissue and then another small instrument is used to seal the cut. This should not be painful, but you may feel some pressure. The treatment usually takes less than 2 minutes. The cells and tissue that has been removed is then sent to a laboratory to check whether the cell changes have been completely removed. This is done by testing for an ‘edge’ of healthy cells around the area that was removed, sometimes called having 'clear margins'. They will also check what type of cervical cell changes you had.
This part of the procedure was certainly the more nerve-wracking part but my (female) colposcopist talked me through the whole procedure and asked my consent to ensure I wanted to procede on the day. Unlike a cervical screening, a LLETZ procedure is more invasive and therefore carries some risk – as well as after-effects, both physical and emotional, the latter of which I don’t think I’d truly factored in until now.
According to Jo’s Trust, “about 85 in 100 (85%) people experience bleeding after LLETZ, which can be expected for between 2 days to up to 4 weeks after treatment. The pain varies from person to person, but should not be too severe, and is often described as a cramping pain, like a period.” I’d concur, experiencing a little bleeding after my first LLETZ for the first few days, along with mild cramping which again, only lasted a few days.
The healing process itself takes 4-6 weeks, as the raw area left on the neck of your womb regenerates. During this time you are advised to avoid sexual intercourse, not use tampons or do any strenuous activity to avoid damaging the healing surface and provoking additional bleeding. You are also advised to avoid swimming for the first two weeks, as this could potentially cause infection of the raw wound, however all other light exercise and activity is fine. The most notable risk, although small, relates to any future pregnancies, as “about 2 in 100 (2%) people who become pregnant at any time after LLETZ will give birth before 37 weeks (prematurely) because of the treatment. Giving birth prematurely is more likely if you have had LLETZ more than once, or had more than 10mm of your cervix removed. Most LLETZ treatments remove less than 10mm of your cervix.”
When it came to the experience itself, my first LLETZ was only mildly uncomfortable, as having had my cervix numbed I really couldn’t feel anything. I’d say it was more disorientating, knowing that a small piece of you was being cut away yet you couldn’t feel it, while the kind nurse was there holding my sightline to the left hand side and asking me general questions about my work and personal life to distract me from the procedure at hand (which, on the whole, worked!). It was difficult to miss the fact that to my right there was a camera detailing my cervix on screen though, to help guide the colposcopist in her work, although it was angled a little away from my sightline, thankfully! It was also a little daunting to have a sticky pad attached to my leg and be told this was to prevent electric shock – or so I believe I was told, I certainly was in a slight state of detachment at the time; knowing what was happening but not really properly processing it.
All in all though, I felt very little discomfort or acute concern during the procedure and was told that all had gone well and I would recieve the results of the biopsy by phone in around 6 weeks time. Another procedure pretty much put out of mind afterwards (aside from having to following the guidelines for healing) until the results were in… which, as I’m sure you’ve guessed by now, weren’t what I had been hoping for.
Results
My first LLETZ sample showed high grade CGIN; cervical glandular intraepithelial neoplasia.
Glandular cells are inside the cervical canal, which means that they cannot be seen or monitored as easily, and my colposcopist was concerned that they hadn’t been able to get clear margins on my sample and that further treatment would likely be needed. This was when things got a little, not scary exactly, but definitely concerning for me, as I needed to wait for the next multidisciplinary team (MDT) meeting for my case to be reviewed and the next course of action to be decided.
This meant waiting a further three weeks before learning that another LLETZ procedure had been recommended. It’s what I had been led to expect, and I appreciate the fact that various different departments (and brains!) weighed in to decide how to procede, but the waiting time certainly began to get to me as did the uncertainty of it all. When it comes to your health, letting your mind run wild with possibilities really can begin to affect you mentally!
Additional LLETZs
So, long story short, I had a second LLETZ procedure.
This went pretty much the same way as the first, expect that my colposcopist (a different woman, but equally lovely) also took a sample from inside my womb to ensure the abnormal cells were not present there. This was the most uncomfortable sensation, as I could feel a internal prickling that felt entirely disembodied. I’m not sure about you, but when it comes to internal organs I have no real awareness of where each of their surfaces actually are within my body, which made the scraping away of cells from my womb feel somewhat nauseating. It only took a few seconds really, but I felt ‘funny’ for a good few minutes after. No pain, no real discomfort, just weird. That’s the only way I know how to describe it!
The results from my second procedure were equally disappointing, still showing abnormal cells (in my cervix, not in my womb thankfully) and no clear margins, which meant I had to wait for another 3-4 weeks to have my case reviewed again, and the next course of treatment confirmed.
Due to the risk of furture pregnancy complications, a second LLETZ procedure is often only recommended for those who have finished having children, or show cancerous cells, and a third is not typically performed in the space of a year. As a 39 year old woman who hasn’t had children, but who also doesn’t intend to, I was quite adamant that I wanted my health put first, ahead of any hypothetical pregnancy the hospital team might envision for me.
I’d expressed my desire not to have children to my colposcopist on both previous occasions and I think that these notes on my file helped push the case for me having a third procedure to get rid of all the abnormal cells once and for all. Obviously this is a big decision for a lot of people who might be facing second or third LLETZs whilst also wanting to become pregnant in the future, and is something I advise anyone to talk through at length with a health professional before making any decisions.
I knew that I was in a position in my life to be adamant and vocal in my preferences, and happily my opinions were recorded and taken seriously. Last November I had my third LLETZ procedure, with another female colposcopist, and this time she took out more of my cervix for biopsy (which led to me bleeding more than in previous procedures – although I experienced no additional pain), after first assessing that my cervix had regenerated nicely from the two previous procedures.
Last week I finally got the call I wanted: no abnormal cells present in my biopsy and, as a result, clear margins which effectively mark the end of this portion of treatment. Let me tell you, the relief I felt was very much like a giant weight of my shoulders, and I know my boyfriend (who has been my rock throughout all of this) felt exactly the same. I’m still waiting on a confirmed follow-up plan, which will likely be two six-monthly cervical screenings at the hospital, followed by yearly screenings for the next ten years, but to be honest, I’m delighted that they will be continuing to monitor things so closely going forward. It gives me good peace of mind that should any more abnormal cells develop, they will be caught and dealt with swiftly.
So, right now my experience of cervical cancer is very much one of early detection and prevention.
Regular screenings really do save lives and, I hope, I’m proof of that. I know there will still be those of you with worries and concerns over your own cervical screening invites, or perhaps an early diagnosis after attending one. If anyone would like to ask me any further questions or advice, and don’t feel comfortable leaving a comment below, please know my Instagram DMs are always open and I will treat any conversation in the strictest of confidence. This is not a story I thought I’d be sharing this time last year but – after a good 9/10 months of worry – I’m so glad I get to share a positive outcome with you all.
If you would like any further expert advice I point you in the direction of Jo’s Trust for the most up-to-date and detailed information on cervical cancer, as well as the Your Stories section which covers all aspects of cervical screening, cell changes and diagnosis. We have the tools to make cervical cancer a thing of the past. HPV vaccination, cervical screening, and treatment for cell changes can all help prevent it, but we need to increase both awareness and uptake.
I hope this post will inspire you!
