What I am wanting to talk about to you today I have been drafting and writing then changing for the last week so please do forgive me if I waffle or am emotional but it is a hard subject to write about. The importance of your smear test and my experiences these last few months including LLETZ procedures and the suggestion of cervical cancer.
Please note that whilst a qualified GP has helped with some of the information in this article it is not intended as a substitute for medical advice and shares my experiences of procedures only.
Who needs a smear test and who can carry one out?
A cervical smear test, sometimes called a PAP smear is a relatively simple but often seen as an intrusive procedure that everyone with a cervix, however they identify themself, needs to have done. It tests for the early signs and changes associated with cervical cancer. It does not test for cancer as such and further tests are needed if this is seen as a possibility. Usually, however, smear tests catch changes far before they become anything sinister.
A smear test is usually carried out by a nurse at your GP surgery but can be done at a sexual health clinic too. All GP’s are trained to carry out a cervical smear, whatever their gender as part of their training so there is a possibility of asking for a male GP if you prefer due to your identity.
The best thing to do is to ask your GP surgery who usually carries them out and the staff at the sexual health clinic (your GP can give you their contact details) and then make a decision from there or ask for alternatives.
There are at-home tests you can do for HPV available at some chemists. If you choose to do it yourself there are instructions but there is always a chance you could do it incorrectly, that said there is always a chance a medical professional could miss something too so the choice is yours.
If you are a person with a cervix (this includes non-binary folk and transgender men who still have a womb) and have ever had any sexual contact with another person (this includes oral, anal and vaginal sex, any skin-to-skin contact of the genital area and sharing of sex toys) then you are at risk of contracting HPV and therefore at risk of cervical cancer.
Help, I am scared of having a smear or have questions
If you are feeling embarrassed or scared – don’t worry. You’re not alone. At this point, I will pass you over to the GP Zoe who helped me with this article!
Zoe says “Doctors and nurses do cervical smears as part of our daily routine – so it’s something we’re happy to talk to you about and help you feel at ease with. If it’s your first appointment or you’ve previously had a bad experience – tell us that. We can answer all your questions and help you feel as comfortable and informed as possible.
The key to a good experience is communication – so if something is uncomfortable or you’re unsure – tell us. We want you to feel comfortable and safe.”
Dr Zoe says – Things you can do to make your smear test easier
Bring someone with you for support – they may not currently be able to come inside to the actual appointment (due to covid restrictions) but can wait outside to support you before and afterwards.
Book a longer appointment to give you extra time to ask questions and feel at ease.
Ask for an appointment with a particular gender of doctor or nurse – if you feel more comfortable with a female doctor or nurse – you are able to request this and they will try to accommodate this.
You can ask to insert the speculum yourself if you’d rather. We will be fine with that and can show you how to do it.
If the standard speculum is uncomfortable – tell us – we can use a smaller one as they come in different sizes.
What does a smear test check for?
The current cervical smear screening programme is an “HPV first” testing programme – which essentially means when you go for a smear, the lab first tests the sample for the presence of “risky HPV” (there’s loads of different HPV viruses – only a handful cause cervical cancer – and interestingly they’re not the same ones that cause visible genital warts!).
What happens when the smear test results are abnormal?
If no risky HPV shows up, they don’t actually look at your cervical cells, that’s because 99.7% of cervical cancer is caused by risky HPV. Therefore if there is no risky HPV there is an extremely low chance of cancer so it is considered a normal smear test, and you’re told “see ya in 3 years”!
If they DO find risky HPV – they then look at your cells and if they’re abnormal (but NOT cancerous – remember a smear test is a pre-cancer test, NOT a cancer test) – you get sent for a colposcopy which is where a gynaecologist looks closely at your cervix with a camera. You are in a sitting/lying type position with your legs in rests either side, a sheet over you a little for your dignity and using a similar speculum your vagina is opened and the camera and microscope stay outside of your body.
What happened to me
I have never been a big fan of smear tests, let’s face it, who is? That said, I have always gone around the time it was due. Like many of us, I have often put it off a few months when I have had the letter but never intentionally avoided it for long. In 2008 I had abnormal cells and a biopsy was taken but then I believe the area returned to normal as I was put back on the normal smear test routines.
I was late having one recently due to the pandemic as I was shielding so was concerned about going to the GP surgery when I felt it could wait. as such I had my smear around a year after the letter inviting me. When I had my smear I discovered the last one they had on file for me was around 2011. This means the last one I remember having in around 2016 was never recorded and the results won’t be known.
It is too late to worry about that now, I have no idea if that would have changed things or not but it is too late to change that now.
In April of 2021, I went for the smear, as usual expecting a letter confirming normal results and that I would be invited again when I am next due. Instead, I received a letter on 21st May telling me they have found high-risk cells and I needed an urgent colposcopy within two weeks. That said, the appointment also arrived the same day for less than a week later on 27th May.
At my appointment, I was told there were a lot of abnormal cells and they would need to do a procedure right away to remove what they could see. So under local anaesthetic, I had an LLETZ procedure.
What is the LLETZ procedure?
The LLETZ procedure is, in my opinion, very undersold as a simple procedure that is done under local anaesthetic as something pretty straightforward. Unfortunately for me, this was not the case, and subsequent research and talks with others who have had the procedure have agreed it is a major procedure that whilst small in area is quite horrendous in reality.
During the LLETZ procedure an electric wire is used (you don’t really know that though as numb down there!) to cut away a chunk of your cervix. The piece they removed from me was around the size of a marble.
After the LLETZ you are advised not to have a bath, swim, use tampons or have sex for at least a week afterwards depending on the pain, discharge and any bleeding. A watery discharge and some bleeding is expected for up to 4 weeks alongside pain like cramps.
As I am allergic to a large number of painkillers I had to be prescribed something and was still in a lot of pain. It felt as if someone was sticking a sharp pencil into my cervix repetitively for weeks. I also had period pain type cramps for weeks. After 2 weeks I also had an infection which caused more pain so had to have antibiotics.
Whilst this is my experience others have had similar issues, and some have fewer issues so please don’t presume this is how you will be, but be aware it is possible. I of course had no idea I was even having the procedure or what to expect until it was done.
I had to use sanitary towels day and night for 4 weeks until the discharge had stopped. The results of the examination of the piece of cervix taken away also take around 4 weeks.
Advice if you have to have the LLETZ too
For a few weeks after the procedure, you are likely to have discharge. It can be blood, watery, or a mixture of both. As it lasts for some time reusable sanitary towels or period pants really are ideal for this. Disposable ones are uncomfortable in comparison and costly. If you are due an LLETZ invest in some reusable period products (Not anything that has to be inserted though as that can cause infection and be painful!).
These are some of the products I would recommend from my favourite brands:
If you worry about the cost of reusable sanitary products or would like to help reduce period poverty please do check out Cotton Pony where they sell reusable pads as well as have a system so you can donate too.
If you do leak or get blood on clothing or bedding check out Save My Knickers stain remover!
Results of the LLETZ and having a second LLETZ procedure
Around 4 weeks after the procedure I received a letter saying that examination of the cells had found them to be precancerous. They had gone to the edge of the sample taken so I would be discussed at a meeting where they would decide if I needed a repeat LLETZ. On hearing this I was distraught, I didn’t want that horrible procedure again and finding my cells were precancerous was scary too.
Just for perspective, there are low-grade cell changes, moderate cell changes, high-grade cell changes and then precancerous cells which do then if left turn into cervical cancer. I was thinking, at least it isn’t cancer, no one had said it could be but naturally, I had been worried.
I called the consultant to find out when I would know what the result of the meeting was and was told it would be mid-July and given a date I could ring to check from. Of course, I rang on that date, I found that I had to have another LLETZ. I was gutted, I expected it but in all honesty, I hoped so much that they would say I didn’t need it.
Being told it could be cancer
I received a text with an appointment for my second LLETZ and called to confirm this but had to leave a message on an answerphone. An hour or so later, whilst I was working and listening to a podcast my phone rang. The lady I spoke to, a nurse I believe, said she was assigned to do my procedure but as she is not as experienced she wanted someone else to do it as it is my second LLETZ and made me an appointment for a few days later.
During the phone call, she explained in more detail the reason for a repeat LLETZ and the outcome of the meeting about my case. Some of this information I think she was under the impression I already knew, but it was new to me.
I was told that the reason I was seen so quickly for my colposcopy and they insisted on the LLETZ immediately in that appointment as the changes they had seen on the smear and during the colposcopy had led them to believe it was cervical cancer. they believed the changes and large amount of cells that were in my cervix were cancerous cells.
As this sunk in, whilst I was on the phone, I was trying to be realistic and remember they only found precancerous cells in the sample. Everything would be ok.
Due to this, she explained the LLETZ needed to be repeated asap to check for any further precancerous or potentially cancerous cells. Four days later I was back in the hospital for another LLETZ. The consultant I saw reiterated what I had been told on the phone but also told me that there was also a possibility they had removed cancerous cells as they had expected but those were not sent off.
She described it as like cutting wood, you would be able to send off the lump of wood removed but not the sawdust. The cancerous cells (if there were any) could be in the sawdust as such, and for that reason, they may not know if there were any or not.
Providing this sample shows clear margins of normal cells around any bad cells and they are happy with what has been removed the next step is a “test of cure” in 6 months where they look for any more abnormalities and to see if the HPV has gone and then decide if there is anything further to be done.
Where I am at now and my feelings
It is now 4 months since my smear test. My second LLETZ was done now 10 days ago, I still have some pain from it and some cramps, especially waking me in the night, but I am hopeful that all the cells that needed to be removed have been now. I will find out the results in a few weeks.
Mentally, I am struggling, I worry about what this sample will show, I worry if I have had cancerous cells removed and may never know, I worry about what will happen next and if I am at higher risk now of cervical cancer or any other cancers.
I believe the best-case scenario is now that I have nothing further until the test of cure in 6 months. In the worst-case scenario, I am not sure, I do know they say they can not do the LLETZ more than twice, there is a possibility of hysterectomy if further cells exist or appear but time will tell about that.
I would like to think that the worst-case scenario is that I unknowingly had cervical cancer but don’t know, but who knows. I am left with lots of questions and not really any clear answers. My cervix is still sore after the second LLETZ but the main pain I have is mental, the stress and worry and the unknown alongside the trauma of the two procedures which are like mini operations in the space of 2 months!
It has however made me determined to ensure I encourage as many people as possible to have smear tests when needed as I can assure you, whilst they are unpleasant, they are not as bad as this has been!
About Dr Zoe
Dr Zoe Watson is a trained female GP who also has a business called Wellgood Wellbeing which you can find on Instagram and Facebook. She has helped me with this article as she is as passionate as me about helping break down barriers preventing anyone with a cervix from having a smear test.
Other articles you may find helpful and resources
If you have any questions or worries I highly recommend the Jo’s Trust website and helpline. Whilst it is for cervical cancer they cover everything from a smear so don’t feel your concerns don’t warrant speaking to them, they do!
A fellow blogger has written about her experience of smear tests. Why not pop and give that a read too.
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