20 July 2018

My smear wasn’t clear…

Well, the title says it all really doesn’t it? However, I want to elaborate a little more on what actually happens when your smear isn’t clear because I found it really hard to find personal accounts on what happens next when I started looking online after receiving that dreaded letter.

I avoided my smear test, or cervical screening if you will, like the bloody plague. I should have gone for my first test age 25 when I first received the letter from the NHS inviting me for one. Like most people, I feared to get my bits out in front of a complete stranger and having the procedure done. I felt embarrassed and would rather just keep my bits to myself thanks. Also, my family history with this kind of thing really isn’t great and therefore in the back of my mind I thought I knew that something would be wrong and that meant I’d have to get my bits out in front of strangers on more than one occasion and then face up to whatever was wrong and stupidly I opted for the ignorance is bliss approach.

I can’t actually tell you the number of times my sister hounded me about getting my smear booked but of course, I didn’t listen and left it and left it and left it… you get the idea. Then a few months ago I called the doctors to book Ophelia’s jabs and when I heard the words “is there anything else I can help you with today?” I spoke up and said, “Oh yes actually, could I book myself in for a cervical screening please?” I did it! Queue the anxiety leading up to the appointment. You’d think after having a baby that a smear test would be nothing, Ophelia was a c section baby but I had some pretty invasive examinations and procedures before they resorted to wheeling me down to the theatre but it’s different when you’re in labour. You’re more concerned about the baby than anything that’s happening to your body, plus I was completely off my face on gas and air which helped a lot!

Now I’d heard from plenty of people how simple and easy the appointment is, but believe me when I tell you it really is simple. I took Ophelia with me who held a very concerned look on her face throughout whilst frowning at the nurse and looking back at me repeatedly saying “Oh!” “Whats it?” In a way having there seemed to help me because I was focused on her. The nurse was great, she asked me a few questions, nothing too personal just things like “when was your last period? Any spotting between periods?” etc. Catastrophising the way I do I was assuming that she might ask me to give her the name and date of birth of each previous partner, times and dates, details but it’s nothing like that.

I laid on the bed, bought my feet up towards my bum and then parted my knees, I felt the speculum going in which wasn’t uncomfortable at all. The nurse spoke to me throughout and suddenly said: “all done!” I was pretty shocked at how quickly it was all over and done with and I didn’t feel any prodding, scraping or scratching. The nurse told me I was right in the middle of my cycle which makes the cervix really easy to find, so if you’re worried about discomfort try booking your appointment during the middle of your cycle to make things that little bit easier.

I waited approximately six weeks to receive my letter, I kept thinking to myself that if it was bad they’d have been in touch sooner so maybe I was ok but then it arrived, an NHS letter and the envelope was thick, that was enough for me to know all was not well because they’d included a booklet of some sort and I was sure they wouldn’t do that if they were simply writing to say the results were clear. When I opened the letter and read the results I felt quite angry, Bloody typical. Now I have to go and get things done and I’ll get all anxious, then I walked into my living room and saw Ophelia sitting on the floor playing and immediately I felt sad. Why had I left this so long? What if they actually find cancer in there and Ophelia loses her mummy, what the hell have I done not getting this done sooner? What if I need to have an awful treatment that means I have long hospital stays and it’ll all make me so unwell that I won’t be able to be the best mummy to Ophelia. I felt really sad. A little bit later I started to do a bit of research and found a few people had shared their experiences online, but nothing very detailed. I’m someone who really likes the details and I like to know the process involved in these examinations so I decided then and there that I would eventually write about all of this.

Unfortunately, they had found moderate cell changes and I needed to go and have a colposcopy, which is an examination of the cervix. Colposcopies are carried out by a specialist nurse or consultant, you lay on a bed with your legs in stirrups and the consultant sits between them. They insert a speculum to open the vagina so they can get a clear view of your cervix. A microscope is pointed at your cervix along with a beam of light, but not inserted. They can look through the microscope and the image is also shown on a tv screen next to your bed.

I was so anxious about having the colposcopy, I had to have it done at my local hospital and when I finally got into the room to have it done I started to cry! The consultant asked me why I was crying and I couldn’t even begin to tell her so I just told her I was anxious, which wasn’t a lie. I was very anxious, but I also felt extremely stupid that I had left it so long to go and have my smear and I felt that it was my own stupidity which had led me here having this done. I feared the unknown and the humiliation of having to lay on a bed with my legs in stirrups. I feared any treatment I may be having and any pain that might come as a result of it. I had it all whirring around my head and so I cried! She reassured me and told me she wouldn’t be carrying out any treatment on the same day and that I had nothing to worry about, she assured me that what had been found was not cancer and then I was taken into a changing room by a very kind nurse who handed me a robe and asked me to come out when I was ready.

Once I was in position on the bed and the speculum had been inserted the consultant used a large cotton bud to dab an acidic solution onto my cervix, that bit does sting a little but it highlights the area of bad cells, which turned white after she applied it. I asked if I could see the screen as I always felt better being in the know and they happily showed me everything, they turned the screen to face me and showed me the cervix, the opening and where the abnormal cells where, she explained that the cells we were looking at looked like CIN2 to her, but she thought that perhaps there was also a little bit of CIN3 at the bottom. She then told me she would have to take biopsies and recommended that I didn’t watch that bit so they turned the screen away.

The biopsies were taken with what I can only describe as a small single hole punch on a long rod, they literally just snip little sections out and it’s done. This didn’t hurt me at all and just felt like they had flicked my cervix as I felt movement but no pain. They then apply a brown paste which stems the bleeding and then you are allowed to go and get dressed.

One thing I noticed was that the women who dealt with me were absolutely amazing at talking to me, not only talking me through everything but managing general chit chat whilst doing their jobs which really helped me to relax and try to focus on something other than what was happening. They spoke to me about Ophelia which is something that’s naturally going to make you feel happy as you proudly boast about your child and talk to them about how you chose her name. They understand that this isn’t the same as having your ears or throat checked by the doctor and that it’s important that you feel as relaxed and as comfortable as possible.

A few weeks later I received a letter telling me they had found CIN2 moderate cell changes and CIN3 severe cell changes. Having the CIN3 cells meant that I had to go for treatment so they had scheduled an appointment for me to go and have LLETZ treatment.

I found this image really helpful when understanding the CIN grades and how severe each one is, this also helped me to show friends and family what I had and reassure them that it wasn't cancer.

This image has been shared from The National Cancer Institute Website
Gius D, Funk MC, Chuang EY, Feng S, Huettner PC, Nguyen L, Bradbury CM, Mishra M, Gao S, Buttin BM, Cohn DE, Powell MA, Horowitz NS, Whitcomb BP, Rader JS. Profiling microdissected epithelium and stroma to model genomic signatures for cervical carcinogenesis accommodating for covariates. Cancer Res 67: 7113–23, 2007.

LLETZ is a large loop excision of the transformation zone, which means the consultant will use a wire loop to remove the abnormal cells. The loop is heated using an electrical current and it cuts through the cervix so they can remove the area containing the bad cells. Depending on your circumstances the doctor may choose a different treatment for you in order to remove the cells, you can read more about the treatments available on the NHS website here

An example of the metal 'loop' used to remove part of the cervix from HCP Austria

On the day of my treatment, I chose to wear a dress, as I had done previously for my colposcopy treatment. If you wear a dress you are allowed to keep it on and I just felt a little more dignified knowing I had that extra layer on over my bottom half as I walked to and from the changing area, even though they do provide you with a hospital gown. We all know the backs of those things aren’t the greatest at hiding your goods, the only time I have ever really not cared about that was while I was in labour with Ophelia and finally got my hands on some gas and air, I sauntered off down the corridor, gown wide open not giving a single damn who saw my bum!

I saw the same consultant as before and she seemed extra nice to me this time, let’s be honest, she was probably waiting for me to start crying again but I held it together nicely this time around. It started off with the same process as before, I was asked to go into the changing room and remove my underwear, I laid on the bed, legs in stirrups and the microscope and beam of light were used just as they had been before. The speculum felt a little uncomfortable this time around although it didn’t hurt when I said it was uncomfortable they happily changed it and used a smaller one to make the process easier for me. I didn’t look at the screen this time but they did insert a dye first to check the area of bad cells, then they insert the anaesthetic. This is the bit that hurts according to every account I had read online; however, I was quite surprised that it felt more uncomfortable than actual pain. There are a total of three injections used to numb the cervix and then a patch is stuck onto your leg, I didn’t actually ask about it which isn’t like me but I believe the patch is to protect your leg from the cable used to heat the loop. I was told if I felt any heat or pain to try not to move and to tell them straight away, they stared the procedure and suddenly I yelped and shot up the bed, immediately followed by “Sorry, Sorry I didn’t mean to move, I know you said not to move. I’m sorry!” the consultant told me it was fine and said that actually, she was sorry, she had accidentally caught my vaginal wall with the loop *insert any pained looking emoji you can think of here* she apologised profusely and gave me a minute before asking if I was ok for her to continue. She carried on with the rest of the procedure, taking away everything she needed to and then cauterising the area to stem the bleeding before eventually telling me it was all over. Unfortunately, I had a reaction to the anaesthetic and my legs started to shake towards the end of the procedure, the shakes crept up my body into my middle and my arms. This is the same reaction I have if I have an anaesthetic at the dentist, apparently, it’s something to do with my body reacting to the adrenaline. It makes me shake for a while and then I start to giggle… every damn time!

By the way, I find the anaesthetic at the dentist far more uncomfortable to have than this one.

I went into the changing room to put my underwear back on, along with a sanitary towel followed by a little chat with them about the healing process, what to expect and what to look out for over the next few weeks.

It’s been two days since having the treatment and I am a little sore, I’m finding certain movements uncomfortable and/or painful and I have had horrendous trapped wind today which has been the cause for most of my pain. I have bled very lightly up until today, however, I think I may now have started my period, which by the way is perfectly ok if you’ve just had treatment. I was worried that I would need to allow it time to heal and so I would need to make sure the treatment was done at the right time in my cycle but the consultant assured me it would be fine.

The section which was removed will also go to a lab for testing so I do need to wait for a further set of results, hopefully, they come back ok and I won’t need to undergo any further treatment but for now I have at least four weeks to heal which means, no swimming, sex, baths or tampons. I have also been told that I can expect to bleed for four weeks but as long as the bleeding isn’t heavy it’s very normal. It’s also normal for the bleeding to stop and then start again but if you feel unwell or have any unpleasant odours then you should see a GP as you may need antibiotics.

Well done if you have read this far, I just really wanted to share my experience so that others could see what happened at my appointments if like me they feel better knowing a little bit more about what happens.

This whole thing had me scared, anxious and fearful and if I could hold the hand of everyone having to have this done then I would, but for now, this is the only way I can provide a little bit of help and reassurance to those who need it at such a scary time. You will have to put your trust in the professionals and ask them as many questions as you like in order to make yourself feel better. If Anxious Annie over here can get through it then anyone can!

Written by Cara @lifewithlittleo


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