(0)
0 Items £0.00

The agonising wait for a retest...

8 posts / 0 new
Last post
capricorn2424
The agonising wait for a retest...

Hello,

I'm a new poster, so please let me know if I'm doing anything wrong! This seems like a lovely community, and I just need to get this off my chest and see if anyone has any advice or words of reassurance for me.

Last month, I had my second smear test (aged 28) after a normal one at 25. I HATE anything medical, so just turning up to the appointment was a big deal. The smear test was also very uncomfortable compared to my first, and I've also had two coils fitted so I'm no stranger to a speculum!

Unfortunately I got a letter saying that the sample taken was 'inadequate' (I hate that phrasing by the way - it made me feel like I'd somehow done something wrong), and that I'd need to be retested in three months.

However, I struggle badly with anxiety, especially around medical issues, so I decided to buy a self-test for HPV via the Superdrug Online Doctor service.

Today I got the results back and it said that high-risk HPV was detected (though not strain 16 or 18) and that I should contact my GP for further instructions.

I called my GP this afternoon, and she had absolutely no idea that the Superdrug test even existed, and she refused to accept the result as it 'wasn't an NHS test'. I told her that I was really anxious about this whole situation, and she said that she couldn't really offer me any reassurance as she didn't know if the test was valid or not. Essentially, she made me feel like an idiot for resorting to a self-test, and she said that I just have to wait until my retest in February and 'not to worry about it'... but how can I not?

Assuming the self-test was accurate (and I have no reason to assume it wasn't), what happens next if the NHS retest in February confirms the presence of HPV? Will I just be put on a one-year screening schedule, or will I be referred for further tests?

My head is telling me that lots of people test positive for HPV at some point and it's rarely a sign that anything is or will be seriously wrong, but obviously it's hard to reason with the gut feeling you get when you get results saying 'high-risk' and 'increased chance of cancer'.

I'd love some reassurance that I'm not being really stupid here (but equally, please tell me if I am), and I'd love to hear from anyone else who's been in a similar boat. My thoughts are spiralling out of control here!

Thanks in advance :)

Julia9054

In February they will test for HPV first and if it is present they will test your cells for abnormalities.

If you are HPV positive but your cells are normal, you will just have another smear in a year’s time. If the cells are abnormal, you will be referred for colposcopy.

The words “high risk” are a little misleading. A high risk strain means that that strain has been found in cervical cancer. 70% of cervical cancers are HPV 16 or 18. The HPV test looks for between 12 and 20 strains so that means that 10 - 18 strains are responsible for the other 30%. This means that while the strain you have is classed as high risk, the actual risk is not actually that high! 

The NHS test will not tell you which strain you have but you now know that you don’t need to worry as much as if you had 16 or 18.

You may even have cleared it by February and even if you haven’t, you probably will have by a year after that. 

 

capricorn2424

Thanks for the response :) You make a very good point about knowing it's not strain 16 or 18 - it's not ideal, but it's not the end of the world!

It's just so frustrating having to twiddle my thumbs and wait for the appointment without being able to do anything. I'm very proactive when it comes to my health, so I'm going to have to try very hard to distract myself for the next couple of months... 

Grecian2019

Firstly don't feel stupid for doing your own test . You have taken your health into your own hands and that is something to be proud of . Also people who critisicise don't understand the anxiety and damage to your mental health of the waiting til feb . 

Try not to worry about the hpv. I think it takes a lot of people a year or sometimes more to clear . Normally you have to have hpv for years for it to cause any issues . In the meantime look after your self , eat well, don't smoke if you do, consider not taking the pill if you do and hoped by the time it comes to February you will have kicked hpvs butt . 
best wishes and good luck 

Grecian2019

capricorn2424

Thank you for being so kind :)

I asked the GP I spoke to whether or not waiting until Feb will do any harm, and she said not physically, and I said that the anxiety would probably drive me crazy, and she just said 'Unfortunately there's nothing I can really say to that...' which just made me feel even more stupid! 

I don't smoke and I used to take the mini pill for a couple of years as a teenager - I now have a Mirena coil, but not sure if either of those will affect anything?

I'm itching to do SOMETHING to help hurry the HPV out of my system, but looks as though I just need a big dose of patience! 

Jazza
Jazza's picture

Hi

I can't add much to what Julia and Grecian have said, in terms of advice, but thought I would share my views/experience.

It seems to me that some of the marketing around HPV self testing is, assuming the test gives a negative result, is that women don't need to get screened at a clinic. In terms of what HPV self testing is really helpful for: if (hopefully when) the NHS offers HPV self testing in the future, I understand it will be targeted at women who do not respond to invitations/reminders for cervical screening at a clinic.  When I was 50y I stopped going for cervical screening partly because I was busy and thought (mistakenly) 'it wasn't going to happen to me'.  I believe that if an HPV self test kit had dropped through my letter box I might have used it and then, I'm sure,  if the test had come back positive it would have kick started me into getting more investigations.  Unfortunately, in terms of cervical health, I spent my fifties sleepwalking only to get a cancer diagnosis when I was 60y.  Suffice to say, you are not 'sleepwalking' this one.

Sorry your GP made you feel 'an idiot'.  I think, to be fair, she has given you the correct advice (within NHS guidelines) - maybe her manner was a bit off?  Really well done for going for your smear test despite your anxiety, it's unfortunate that it was particularly uncomfortable and that it didn't yield any results.  It might help if you see a different smear taker next time.  Since my cancer diagnosis, I do a lot of face to face awareness raising about smear tests and quite a few ladies have told me that, after a bit of trial and error, they have a favourite nurse that they ensure they get screened by.  Hopefully your next test will go more smoothly.  If you are feeling a bit anxious you could take a painkiller a hour before your appointment - I've met a few ladies who do that.

Take care

x

 

 

 

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

capricorn2424

Thanks for your reply :)

Yes, I'm very very proactive when it comes to my health (I have type 1 diabetes too so very used to lots of appointments), so it's absolutely doing my head in not being able to do anything except wait.

I definitely want to ask for a different nurse next time. I know I shouldn't be worried about this, but is it rude/will I get the original nurse into trouble if I ask not to have her again?

I'm in a weird position now where I desperately want my next screening but I'm also terrified about what they'll find! 

Jazza
Jazza's picture

Hi

Over the years I've encountered a few health professionals who I didn't get on with. So when, for example, I make an appointment at my GP surgery I ask which doctor or nurse it's going to be.  If it's someone I'd rather not see I just say 'sorry, but I'd appreciate if I could see someone else please'.   I think that type of scenario is not unusual.  It's reasonable and sensible (and not rude) not to want to be examined by a health professional with whom you've had a less than good experience.  And you won't get the nurse into trouble by asking for someone else.  If that particular nurse repeatedly takes inadequate smears, or there are several complaints about her, then her performance will need to be reviewed.  But your simply asking to be seen by someone else (because that particular appointment didn't work out well for you) will not bring any action against the nurse.

x

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot