I come bearing news!
The NHS is looking to roll out a DIY vaginal HPV screening kits after a trial found it could boost uptake by almost half a million. Experts believe that the NHS could increase low cervical screening uptake by about 400,000 women and people with a cervix a year by offering self-sampling kits.
Smear tests can be inaccessible. Marginalised people are less likely to go to their smear for many reasons. It’s not always “fear” or “embarrassment”, it could be a lack of information, poverty, inequality and lack of trust in medical institutions.
Enabling women and people with a vagina to do an at home swab could hugely increase life saving opportunities, catching problematic cells early and allowing people to do this in the comfort of their own home is a game changer.
So what are “at home smear test” kits? Well they’re not actually expecting you to shave a little bit off your cervix, that’s for sure!
When a GP takes a sample for cervical screening, they are collecting a sample of cells from your cervix. If you take your own sample via self-collection, you are collecting cells from your vagina. HPV can be found just as well in both cells from your cervix and cells from your vagina.
As per Cancer Research U.K. If high risk HPV is found, the laboratory will test your sample for cell changes. High risk HPV can cause cell changes in the cervix, which can develop into cancer over time. Not all cell changes will develop into cancer, but it's important to monitor any changes and give treatment if necessary.
What does this mean for people with MRKH Syndrome?
One of the most common questions amongst people with MRKH, do I need a smear test!?
This may be a game changer for MRKHers. Some are getting letters for smear tests and unsure what to do. Some are wiped from the system, which means they aren’t getting HPV swabs just because they don’t have a cervix.
Rolling out at home HPV swabs can mean MRKHers could do home vaginal swabs, this will then be tested for HPV cells in the Vagina rather than the Cervix.
To any MRKHers reading this, if you have been taken off the cervical smear list I urge you to speak to your GP and ensure you are enrolled for at home HPV testing kits.
Here’s something I wrote a while ago for MRKH people on cervical smears;
10 years ago the majority of advice online tells us, no, of course you don't because you don't have a cervix. But as knowledge surrounding HPV and gynae cancers grows, so does the uncertainty amongst MRKHers.
The first thing we need to say is please seek medical advice from your GP or gynaecologist, every MRKH diagnosis is different.
Human papillomavirus (HPV) is the most common viral infection of the reproductive tract.
There are more than 100 varieties of human papillomavirus (HPV). Some types of HPV infection cause warts, and some can cause different types of cancer.
Most HPV infections don't lead to cancer. But some types of genital HPV can cause cancer of the lower part of the uterus that connects to the vagina (cervix). Other types of cancers, including cancers of the anus, penis, vagina, vulva and back of the throat (oropharyngeal), have been linked to HPV infection.
These infections are often transmitted sexually or through other skin-to-skin contact. Vaccines can help protect against the strains of HPV most likely to cause genital warts or cervical cancer.
People with MRKH in the U.K. will be sent the standard cervical screening letter when they reach 25. Sometimes, the NHS might remove people with MRKH from the screening appointments based on them not having a cervix. Some people have actually gone to the smear test anyway.
During lockdown the NHS were sending at home kits due to the reduction of people heading to their smears. The risk of people with MRKH being taken off the "cervical screening" list is that they may be removed from trials like this in the future, when actually we should 100% be included in HPV swabs - see this article https://www.england.nhs.uk/2021/02/nhs-gives-women-hpv-home-testing-kits-to-cut-cancer-deaths/.
Ellamae's cervical smear experience:
I had two smear tests as part of some fertility research. The first test they made it clear that they were testing for any "abnormal cells" and HPV cells. This medical team said people with MRKH are still at risk of gynaecological cancers and it's still worth getting tests for HPV, however the U.K. do not do HPV testing as standard. My first smear test felt really uncomfortable, but equally I felt pretty empowered to be getting something that all my friends spoke about for years, and I had avoided the conversations! However, the first of my test results were deleted automatically from the system and classed as an "error" as it could not detect cervical cells. When I re-did it, my nurse had to add " No cervix, testing for HPV only" on the notes so the test didn't get removed.
So all in all, you may not need a smear test https://www.nhs.uk/conditions/cervical-screening/ and may not be invited, but we are still at risk of gynae cancers and the HPV.
You can ask for, or get yourself, an HPV swab test from lots of local stores if your doctor has said they will not do any swabbing (Read more about HPV here) https://www.nhs.uk/conditions/human-papilloma-virus-hpv/
A smear test uses a speculum to scrape cells from the bottom of the cervix. In people with MRKH, the speculum would just be scraping cells from the wall of the vagina which is fused at the top. These cells can still be tested, but may not contain any cervical cells.
HPV swabbing is slightly different as it's not going in as far, and it's something you can actually do at home and send in.
We suggest speaking to your GP or gynae team for medical advice, the above is based on our own research only.
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