Avoiding Smear Test

Hi

I found this an interesting forum to follow.  Once in my 50's smear tests became increasingly painful and finally impossible at my GP surgery.  I strongly considered saying "no more" but was persuaded to attend the Centre for Women's Health at my local hospital.  This was 9 years ago. 

The Consultant diagnosed an atrophied vagina, which together with a tilted twisted pelvis made the test impossible whilst I was conscious.  I understand that the atrophy is one of the reasons why older women find the procedure so uncomfortable.  The test was carried out under a general anaesthetic and I was so glad I had it done.  The result came back with pre cancerous cells and HPV positive, even though I had not been sexually active for over 30 years. 

I was successfully treated and it was explained to me that as I was HPV positive, I had a 1 in 6 chance of a recurrence.  I had to have an annual test under a GA each year, with, I was told, increasing difficulty for the surgeon.  Last year I was told I was finally HPV negative which meant that the chance of recurrence was now less that 1%.  So I have had my last ever smear test!

So Alex I hope that answers your question about HPV.  A smear test is a choice, but had I not chosen to keep trying, I might not have been here to post on this Forum. 

Hi Alex

That's right, HPV- women are not even offered smear tests under an evidence based program, the Dutch only offer a 5 yearly pap test/smear test to the roughly 5% of women aged 30 to 60 who test HPV+

Australia will move to HPV primary screening this year and we'll also focus on HPV+ women. (unfortunately, we'll block HPV self testing for 6 years trying to force women into the invasive HPV test, which is like the smear test AND we'll start HPV testing from age 25, the evidence says not before 30, lots of young women, about 40%, will test HPV+, these are transient and harmless infections that would clear naturally, so we'll continue to worry and harm our young women under the new program)

HPV testing should not start before age 30 and then 5 tests in total is enough, some women might choose to have just one.

Here in Australia our new program will again be excessive, 10 HPV tests when 5 would do...

You can easily and reliably test yourself for HPV, no need for a painful/uncomfortable speculum exam.

HPV- women who are no longer sexually active or who are confidently monogamous might then choose to withdraw from HPV testing altogether (unless their risk profile changes like taking a new sexual partner)

Women will rarely be given the choice though, the medical profession think it's safer to continue testing just in case a man in unfaithful - I think that's our call.

I'll send you a link by PM to a forum, there are Canadian women on that forum and they can give you the names of HPV self-tests available in your country,

The Dutch self-screener is very reliable and now available in many countries, that would be the best option if you can get your hands on it.

Felinia

You didn't need a GA at that stage, you should have been offered HPV self-testing, then with the HPV+ result you could make an informed decision and might choose to have the smear/pap test at that stage. MOST women are HPV- (about 95% of women aged 30 to 60) so the HPV self-test would confirm that fact avoiding the need for anything else.

If you'd come back HPV- you would have had an unnecessary GA, you could have obtained your HPV status using a HPV self test.

Older women often find the speculum exam incredibly painful, if they want to test they should be offered HPV self testing, it's reliable and most tests are easy to use. Many older women stop testing because they can't tolerate the speculum exam. it's disgraceful that HPV self-testing is not offered as an alternative. I'm sure this is because they know most women would prefer that option and they'd rather push women into the program.

The speculum exam can leave older women bleeding, sore for days and even cause damage - also, UTI's.

About 95% of women aged 30 to 60 ARE HPV- so a simple self-test gives you very important information - HPV+ and you have a small risk of cc and have a small chance of benefiting from a 5 yearly pap/smear test, (until you clear the virus)

HPV- (like MOST women) and you're not at risk and cannot benefit from smear/pap tests.

It's a disgrace that this option is not given to most women.

Also, almost all "pre-cancerous" cells do not progress to cervical cancer but a HPV+ women (aged 30 to 60) with a smear test/pap test that's CIN 3 (and sometimes CIN 2) is usually treated.

All the best...

I'm in the UK where all women over a certain age are routinely offered a smear test every 3 years.  This is the standard protocol and they can choose not to accept.  I don't know if HPV self testing was available in the UK in 2008 when everybody had failed to do a standard smear test on me whilst conscious.  The earliest date I have heard of self testing being available in the UK was 2014. 

I had certainly never heard of HPV until 2013 when after 5 years of clear smears following 2 LLEDZ (?) treatments, the hospital wanted to sign me off.  (I didn't make that clear in my original post when I re-read it). They only did the first HPV test as an afterthought during the 2013 smear, which is when I got the positive reading.  I got called back by the senior Oncologist with no explanation given.  Needless to say this scared me silly, but he only wanted to explain why he would not sign me off.  This was then repeated annually with the smear test until the clear result in 2016.  My Consultant told me in over 30 years he could count on one hand the number of women where smear testing was only possible under a GA and I was one of just two on his current list. 

Had I had the HPV test and a positive result in 2008, as I understand you, the pre cancerous cells would never have been looked for, let alone found?  There is a family history of cancer - my mother and brother both died from it - so that is one ticking time bomb I am glad was found and dealt with. 

I do agree with you though that information about HPV self testing should be much more widely publicised and the option made available to women.  It certainly isn't here in the UK - none of my friends in the 65+ age group had heard of it.  Whether I could have self tested I don't know, I can't even insert pessaries or applicators with vaginal cream any more, such is the atrophy and twisting.  But I am the anomoly, not the norm.

It's water under the bridge for me now though.  Best wishes

Hi Revesay

I'm in Australia and I'd be appalled if a medical professional would agree to do a full. hysterectomy for "abnormal" cells. If that was carried out for every woman who had "abnormal" cells, most women here would be wothout their uterus!

The lifetime risk of a colposcopy and biopsy here is a huge 77%, the cancer has a lifetime risk of 0.65%...our over-screening program, which starts far too early and tests too often and for too long provides no additional benefit to women, but produces lots of false positive pap tests and very high over-treatment rates.

Our new program will be better, but still side with excess, our young women will continue to suffer under the new program, long-standing evidence says HPV testing should never start before 30, we'll start at 25, that means about 40% of young women will produce a HPV+ result and probably be referred for colposcopy/biopsy. We know these early HPV infections clear within a year or two, by age 30 the 40% who test HPV+ is down to about 5%

For a start, are you even HPV+?

If not, you're wasting your time with pap testing, biopsies etc.

ONLY HPV+ women aged 30 to 60 have a small chance of benefiting from a 5 yearly pap test (until they test HPV-)

If you're HPV+ and aged 30 to 60, it will depend on your CIN rating, even CIN 3 is usually treated by cone biopsy not hysterectomy, most CIN 3 does not progress to cc, but everyone is treated. 

CIN 2 is often treated too, CIN 1 should not be treated, women usually re-test in 12 months time.

Lots of things can produce and "abnormal" pap test - infections, inflammation (from condoms or tampons) hormonal changes during menopause or pregnancy, trauma (childbirth, rough sex/toys etc)

and even perfectly normal changes in the young and maturing cervix are often picked up as "abnormal" changes.

So I'd urge you to get a second opinion before you agree to a hysterectomy.

I don't consider the test important at all (for me) but I can understand why HPV+ women aged 30 to 60 might decide to test, they at least have a small chance of benefiting.

It doesn't matter whether you've been sexually active or not, the testing should focus on those women who test HPV+ and are aged 30 to 60. You can be very sexually active, but if the woman is HPV-...then she's not at risk of cervical cancer.

So it's only about 5% of sexually active women aged 30 to 60 with a small chance of benefiting from pap testing.

Also, you can check your own HPV status, there are HPV self testing kits available online. HPV- and you're fine, HPV+ and aged 30 to 60, there's a small chance you might benefit from a pap test.

Note: MOST abnormal cells do NOT progress to cervical cancer

Hi Eliz

Thank you for your communication. I am post 5 years menopausal, last sexual activity 2 years ago. After the results got Clindamycin treatment ( vaginal) for 7 days. Still the lesion did not disappear which means it's not infection. I don't want a biopsy because l don't need the uterus anymore and l don't want to take chances of that small " might progress to cancer".

I'd be asking about your HPV status, most women our age are HPV-

If you're HPV- there's no risk it will progress to cervical cancer

So I'd urge you to at least check your HPV status

I couldn't disagree more with the idea we don't need our uterus after menopause, I value and respect every part of my body and will protect it from unnecessary tests, procedures and surgeries.

You might want to do some research, you might be surprised to find our ovaries and uterus have a role to play right through life.

Not sure I can add links here, but if you google the subject you should find something on the subject.

"The pelvic floor should be considered in surgical decision-making are: pelvic organ prolapse, urinary incontinence, bowel dysfunction, sexual function and pelvic organ fistula formation. These outcomes are particularly relevant as life expectancy has increased and sequela may occur a long time after the surgical procedure and severely impair quality of life"

Taken from "Long Term Effects of Hysterectomy" by C. Forsgren and D. Altman, Aging Health, 2013

All the best, please take your time with this important decision.

Note: most post-menopausal women are HPV- which means not at risk of cc, about 95% of us.