It Started With A Kit! – and led to a procedure to prevent cervical cancer.

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If you’ve followed my blog for any length of time you will know I am a big advocate of the home HPV test and my friend Danielle wrote a really good piece reviewing this when she was involved in the trial back in 2014 Danielle’s Home Test Kit Review. The test she took showed HPV which meant she was called in to have a sample of cells taken by her GP. This came back normal and she was discharged for 3 years. She then had her second smear in late 2017 and then was recalled again in March this year.

I was in contact with Danielle quite a bit during this period as the wait times in the UK had been running between 6-8 weeks and I could tell she was very anxious as to what the outcome would be.  One day in late April she sent me a copy of her results letter explaining she had severely abnormal cells and HPV. I did my best to reassure her and prepare her for the fact that she may need to have a procedure to remove the abnormal cells.

Here’s Danielle’s account of what she went through:

The letter received following my smear confirmed I had high grade dyskarosis. I immediately panicked as I didn’t know what this was and was referred for a colposcopy. Two weeks later I went for my appointment. I took the day off work and my partner came with me. This really helped settle my nerves. He was so attentive and reassuring which really calmed me down.  I arrived at St Mary’s gynaecology unit and waited in the foyer there for around 20 minutes which felt like forever. 

When my name was called I went straight in to see my Consultant Dr Winters. There were 4 other ladies in the room I believe 3 were nurses and 1 trainee. It was kind of daunting having 5 people there whilst you have your legs a kimbo 🤣

I sat down and Dr Winters confirmed I had high grade dyskarosis and would therefore carry out the colposcopy and LLETZ, if she thought that was necessary after seeing my cervix close up. She read through a disclaimer and asked me to sign.

Once it started I remember one lady who was super lovely spoke to me through the whole procedure and even complimented me on the colour of my lippy. She took my mind right off what was happening. We even laughed as the machine they used to heat the wire and cut my cervix didn’t work at first! It was like some comedy sketch with them pressing buttons but eventually they found a loose connection and were able to start the procedure which took around 30 minutes.

Once it was finished I got changed and sat with Dr Winters for maybe 5 minutes she drew a diagram of the area she had removed and explained she would give me a call in 4 weeks with the results. She also gave me a leaflet of aftercare and what to look out for in terms of infection The nurses made sure I was ok before walking me out to a waiting room where my partner was waiting for me. We went home and I had a brew and took some painkillers

The recovery period was quite difficult and I did really suffer for around 4 weeks after LLETZ with bad cramping and heavy bleeding. I called st Mary’s back for some guidance and a nurse confirmed it was normal to bleed and have cramps but if I was worried I could always go back for a check up.
I had a long wait for results and was very anxious during this time, it did send my mind into overdrive and caused me to become quite stressed about the outcome. I was told 4 weeks for my results but had to wait 7 weeks which made me worse. But as they say no news is good news. 
Finally after a phone call and letter it was confirmed they removed pre cancerous cells and sent me an appointment for a follow up smear in 6 months, back at the colposcopy clinic. I was so relieved that I was ok and happy that I was to receive a follow up so quickly really.
Well what can I say about Hannah? . She was my rock and my guide through the whole process. Someone who completely understood my worries and feelings and would check on me daily to make sure I was ok. Hannah is a fountain of knowledge and has great empathy for your situation whilst also being a great comfort. I couldn’t have remained sane without her! Thanks hannah xx

I often think to myself that had it not been for that trial and little kit then Danielle’s cervical abnormalities may not have been diagnosed! As unpleasant and stressful an experience  she’s had I know she’s is relieved and grateful that this was discovered at the earliest possible stage.

In fact I think that Danielle’s experience could give us an insight in to the future of cervical screening. Using the home HPV kit to make sure even the busiest of women are screened. Then identifying those at higher risk and screening them at more frequent intervals and treating any abnormalities when they arise. It certainly worked for Danielle anyway 💚

2019 Survey Results

Since starting my social media pages I’ve run a survey each year to understand women’s experiences and attitudes towards cervical screening

This years was the biggest to date involving over 400 women from 18 different countries!

I started by asking about general cervical cancer awareness.

93% said they were aware of the importance of cervical screening and 88% also said they understood what HPV was and why it’s important we are tested for this virus. Only 5% had said they’ve never been for a smear and of the women that had, only 6% said it was over 2 years since their last smear!

The next section covered the test itself. Only 10% of you said you felt very worried about the thought of going for your cervical screening with the overall majority saying they felt slightly anxious or not really bothered.

With the majority of my followers being UK based it was little surprise that 67% said their rest was done by a nurse, 28% a gynaecologist and only 15% sad their GP. It was good to read that over 70% thought their dr / nurse explained it clearly, 24% a bit vague and unfortunately 6% or women were given no explanation as to the test procedure.

It’s safe to say none of us really look forward to a smear and in particular the speculum! The majority of women 57% said they found it an unpleasant instrument but tolerable, 15% said it was horrible and 28% were not bothered by it at all. In terms of pain, over 95% the women that responded said it was slightly painful or not painful at all which is good to hear.

Time taken to receive results has had a lot of focus recently and sadly only 30% of women got their results within 2 weeks, worryingly 22% actually waited over 6 weeks!

In terms of the actual results 46% had normal cells, compared to the overall average of 90% which is probably skewed due to the demographic of ladies that follow my page!

Of the women that were referred to colposcopy 68% had biopsies taken, 14% were discharged after a visual check only and 18% had their abnormal cells removed there and then, a “see and treat” appointment.

LEEP / Lletz is the most common form of treatment with 82% undergoing this.

Finally I asked about social media and only 31% felt cervical cancer and screening for enough exposure on social media. I’m pleased to say that 96% felt my page was a useful resource too

Big thanks to everyone that contributed and feel free to get in touch with any questions or comments

Hannah xx

Cultural Barriers and Breaking Taboos

It is widely accepted that people from a Black, Asian and Minority Ethnic (BAME) background are harder to reach and so less likely to attend #smeartest appointments.

Here’s a post by an Asian lady on my instagram page who would like to share her experiences

One day I received a letter to remind me to have my cervical smear, which was due. Now as an asian woman I have been told that if you’re not sexually active, you don’t need to have a smear. It made sense at the time and at my young age I never questioned this. Therefore I have never had a smear test. So what happened that made me decide to have one now?

Nothing!

But I felt like maybe I should just check to make sure my cervical cells are healthy especially as a documentary was being screened about Jade Goody dying of cervical cancer in her 20s. She was young and had her whole life ahead of her. For all I know that could be me too and I wouldn’t even know.

So I booked in for my first smear at my local GP and this is how it went.

The nurse double checked my details, and as it was my first smear she just ran through the process for me. I was then asked to remove clothing from my lower body ( so pants and trousers). It felt a little weird but it was no less embarrassing than stripping off for a bikini wax. I then layed down on the couch ready.

My nurse explained about the speculum and inserted this easily. At first I thought “ wow this isn’t so bad!”. But then I don’t know what she did ( maybe widened the speculum or maybe inserted the brush) but it did hurt and I did yelp! She stopped and said she wants to try again which we did and it hurt a bit more than expected. I won’t lie I did start crying because it hurt but I think it was also a little bit of fear and anxiety as it was my first time. Again she stopped and explained she was having difficulty seeing my cervix and asked me to reposition myself by placing my fists under my lower back/ buttocks. Third time lucky I say because the pain was much less intense and before I knew it we were finished!

Within minutes I was dressed again and out the door with information that my results would be ready in a few weeks.

Looking back on this experience, it wasn’t scary as I thought it would be especially for someone so unprepared about the whole thing and yes there’s some pain involved but we women were designed with a higher pain threshold. It’s no more painful then getting a bikini wax tbh!

Advice to asian women:

It is true that you don’t need to have a smear test if you are not sexually active but once you are, please start booking in for a smear.

If you are not sexually active, you can still have a smear. Abnormal cells can still grow in your cervix even if you’re a virgin.

Don’t let cultural attitudes hold you back from doing something that protects you. There’s no shame in looking after your health!

Advice for women having first smear test:

If you have questions, do ask the nurse

I’ve heard taking 2 paracetamol 30mins before can help lessen some of the pain. Try it!

The nurse does not care what your pubes look like. She’s concerned more about ur cervix! So don’t worry about getting a wax beforehand.

Ask for a small speculum!

Easier said than done but try and relax. It really does help the nurse do her job quickly and efficiently with minimal effect on you.

And one final piece of advice for all:

Educate yourself on smears, abnormal cells and HPV. Spread the knowledge and encourage other women to get a smear test done. Let’s save lives people!

The Australian Screening Programme

I asked my friend Rosie, who works in histopathology about the cervical screening programme in Australia

What age do women start?

Until last year, women and girls in Australia were encouraged to get Pap testing after two years of becoming sexually active, regardless of age – the cost of these were covered by Medicare, our public universal healthcare system. The current guidelines advise women not to begin Pap testing until the year they turn 25 years old. 

How often do you have smears? 

Under the previous guidelines, women and girls were encouraged to get Pap testing every two years (beginning two years after becoming sexually active) as a part of routine screening. Today, they are encouraged to get Pap testing every five years from age 25. If patients are known to have abnormal results, they will be encouraged to get their next Pap test in 1-2 years to monitor the cervix. 

Who carries them out (Dr, Nurse, Gynaecologist)?

In my experience, all three can and do carry out the testing. However, I most frequently see my General Practitioner for Pap testing as this service is the most accessible to me personally. Seeing a Gynaecologist for Pap testing is generally the result of abnormal results and the subsequent need for a specialist – such further testing is not necessarily covered by Medicare and often costs the patient out of pocket. It is also not uncommon to get your Pap testing done by a nurse at a sexual/reproductive health clinic, for example. 

Is there a national screening programme? Is HPV vaccination available? 

In Australia, we do have a National Cervical Screening Program. The guidelines surrounding the Program changed in December 2017, increasing the starting age and decreasing the frequency of Pap testing. Changes were also made regarding the test itself, shifting from traditional slide-based Pap smears, to the updated liquid-based Cervical Screening Test (CSTs, also known as a Thinprep). The increase in starting age for CSTs to 25 has affected the fee coverage by Medicare – if you are younger than 25, you are not eligible for cost-rebatableCSTs and often healthcare practitioners are reluctant and unwilling to carry them out on women under 25 at all. Unfortunately, despite having cervical cell abnormalities and a clear need for CSTs, I (and many young women) fall into this group and are facing difficulties gaining access to our testing.

In 2007, Australia became the first country to introduce a National Human Papillomavirus Vaccination Program, at the time being a school-based program for girls aged around 12 with a “catch up” component for older women. This vaccine was quadrivalent, protecting girls against four strains of HPV (6, 11, 16 and 18). As a 12 year old in 2009, this is the vaccine I received. The program was updated in 2013 to include school-aged boys as well as girls, however, administration of the HPV vaccine to males ceased at the end of 2014. As of 2017, the HPV vaccine protects against 9 strains of the virus. Despite the availability of the vaccine to non-school-aged women, I have been told the personal experiences of many women attempting to gain access to the vaccine but being turned away nonetheless. I was lucky enough to receive my full course of the quadrivalent HPV vaccine in school, but nonetheless contracted those four strains of HPV (despite thisI’m grateful to have been vaccinated). This prompted me to seek out a “booster” for HPV – something that my GP had never been asked before. Upon speaking with a pharmacist, I learned that each dose of Gardisil costs over $150 in Australia with no rebate for patients.

What is normally done about abnormal cells?

In my experience, wait for 1-2 years before returning for a CST, so as to monitor the cervix and ensure no high grade changes have occurred. I have known women to undergo colposcopies, large loop excision of the transformation zone (LLETZ) and/or general cervical biopsies.

 

Vaccines Work!!

If there is one good news story this week it’s news that the HPV vaccine is working! HPV causes changes to our cervical cells and could lead to cancer. The treatment to remove these cells is pretty unpleasant with some nasty side effects to. Not to mention the anxiety of waiting for results and the cycle repeating itself again.

With today’s news, it means that ladies in their late 20’s or early 30’s could be the last to go through this.

I’d say that’s worth a little drink 😉

See your doctor if you don’t feel right!

Melissa has already blogged twice for us about her experiences of cervical abnormalities and her pregnancy. We are pleased to share another one of her fabulous posts

Smear tests and Paps are SO important. In the US they changed the rules to now 3 years for PAPS which I believe is the wrong thing to do. Early detection saves lives, as it saved mine.

I am SUPER proactive about my vaginal health because I have been having issues for over 10 years now. Endometrosis, HGSIL cells (twice), LEEP surgery, issues with birth control etc. Even though they don’t recommend it I go once a year and ask for a pap-smear JUST to be certain my health is staying on the right track
 I have been having severe pain recently and getting my period every two weeks so I called and made an appointment. I also had black blood and a really foul order at one point in the last month and it really freaked me out. So I get to the doctor and he tells me that we are going to change my birth control again to no estrogen and see what happens. If this doesn’t work I will need to have surgery again.
It is extremely discouraging because I feel like I cannot get it to just be normal, that there is something always wrong. But on initial look he said he wanted to do a SMEAR test so we did it right there and while I was uncomfortable for a day or two I felt that it was the best decision. Numbers seem to be normal so I am hoping that the new birth control fixes the problems.
All I can say is get checked and if it does come back abnormal do not be discouraged. I was told for years I wouldn’t be able to bear my own children and although I was high risk I have a perfectly healthy and extremely advanced almost 3 year old. Take care of your health because no one will do it for you

Uk to Australia – Why we should make smears our priority

From UK Expat Tiffany, 41, now living in Sydney

My dealings with the NHS in my London borough had always been good, going to the GP no more than once a year and getting my pap smear every two.

I moved from the UK to Australia in August 2008, and didn’t go to the doctor until a year later, until I had a list of issues including a pap smear. (It’s quite expensive for a doctor’s visit, though you do get longer consultation than the average 6 minutes, in the UK.)

A week or so after my pap smear the doctor rang me and asked me to come back in to discuss my results. He explained that I had CIN 2, which I’d never heard of, and that he was referring me to a specialist. As it was at a public hospital and I was a new patient, this appointment took 8 weeks to get. I wasn’t overly concerned at this stage as I wasn’t feeling unwell or had any of the (what I now know) the symptoms can be. The specialist took a pap smear, and then called shortly afterwards to come back for the results. The CIN had now become CIN3 and they wanted to operate as soon as possible, using the LEETZ procedure. A date was found, though it was still 4 weeks away. 

Even though,  I was halfway around the world I’d kept up to date with Jade Goody, her diagnosis and subsequent passing, and this was always in the back of my mind, so I knew I couldn’t just let these abnormal results go.

My greatest concern at this stage was more financial as I’d been struggling to get a Medicare card, which I was entitled to, but kept encountering roadblocks from that particular government department. I was in a real quandary as whether to return to the UK and hope for the best, with the so called postcode lottery. Long story short someone, at the Medicare office, took pity on me and helped me get my Medicare card which meant I could have that first operation without the huge expense. Once the financial side had resolved itself, in that month of waiting it was the fear of the unknown rather than the operation itself. Being far from my family and only having my partner at the time for support was tough.

The day of the operation finally dawned and the hospital staff were absolutely lovely about calming my nerves. Before I knew it I was out like a light, due to the anaesthesia, and what felt like 5 minutes later I was being woken up in the recovery room. Besides feeling a bit groggy but still chatty, so much so that the nurse actually had to tell me to pipe down. As for the post op pain, it didn’t actually feel any worse than a bad period pain, to be honest. As it was day surgery I was released later that day and told to come back 2 weeks later for a follow up pap smear, oh and to sit on my laurels for 2 weeks and rest. (I admit I only lasted a week).

The result of that follow up pap smear came back as stage 1 cancer, and that I’d need a second operation as a matter of urgency. My initial reaction was actually to be pissed off since I didn’t smoke and didn’t take illicit drugs, and lived a relatively healthy life, yet there I was with cancer. If I’d known I’d have gone crazy in my teenage years, but that aside I wasn’t going to let it get to me and I was going to fight it. What still surprised me was the speed at which everything had progressed from the initial CIN2 diagnosis to cancer (12 weeks in total) and yet at  no time did I ever feel unwell.

Two weeks later I was getting reacquainted with the operating theatre, this time to have the cold knife cone biopsy. This time I woke up in the recovering room there was an actor from Home and Away there smiling at me. To this day I have no idea what he was doing there, but I wasn’t imagining it. (Only in Australia I suppose). The surgeon was confident that they’d got all the cancer cells out, so all I needed to do was rest for another 2 weeks and go back in 3 months, for a further check-up. That result came back clear so It was then a pap smear every 3 months for the first year (as well as not trying for a family – I was in a serious relationship at the time, and kids had  been on the agenda), every 4 months for the second year, every 6 months for years 3-5, and then once a year until this year, which will be year 10.

I’m no public figure but have been very open about my story, as I figured if I saved 1 friends life or stopped them going through what I went through it will have been worth it. So many women I know never went for follow ups until I railroaded them on occasion or they heard my story. I think by allaying their fears and concerns it was more of an incentive to go and get a pap smear Yes, it’s uncomfortable, but is always over so quickly, and when you’ve had that many you just become used to it.

As I always say, wouldn’t you rather have 1 smear every 2 years or 1 every three months. I’m so passionate about spreading the word that I even made the mistake of trying to engage in a healthy debate with a friend, who’s an anti-vaxxer, about  the HPV vaccine. I chose to walk away from that argument as we were never to go agree…..