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LLETZ - my experience

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Nikii72
LLETZ - my experience

Hi all,

 

Just thought I'd share my experience with you all as I have spent the last 2 weeks worried and reading everyones posts. 

I had my smear test on 29th January after my husband and a colleague had been bugging me to make the appointment. If left alone, I probably wouldn't have had a smear as I didnt see the point. I honestly thought nothing of this until I received my letter saying I had been booked for a colposcopy on 20th February. I immediately took to google, thinking what has gone wrong here. I got myself all worked up and called my GP surgery for someone to explain to me the results. This was a friday afternoon and I was told a doctor would not be able to call me until Monday. Monday came and no one contacted me back but I then received a letter saying severe dyskaryosis. 

All week leading up to the colposcopy I was so scared. Then came my appointment where I was sat in the waiting room, unable to breathe, never felt such fear in my life (even after 2 natural child births). I was called in and told I would have LLETZ even before i was examined which i was sort of expecting but hoping i wouldn't. I got onto the bed where the colposcopist assured me it didnt look cancerous. The local anaesthetic did cause a sting (i had 3 all around my cervix). The adrenaline sped up my heart rate and made me panic a little more but i was assured this was normal. I could feel exactly what was going on but it wasnt painful, like a scraping sort of feeling. They answered all of my questions and made me feel at ease. 

After i left and got into the car, i burst into tears and i wasnt even sure why. Maybe it was the adrenaline, maybe it was the high amount of fear I felt beforehand or maybe it was relief that it was over with. All I can say is that I am very grateful for cervical screening and would tell everyone to get it done. It makes you appreciate life so much more. 

Awaiting my results now but I am no longer scared. CIN3 was confirmed at my appointment but the team reassured me so much. I would love for others to share their stories and give me ideas of how I can raise awareness of cervical screening. So many people are prevented from having cancer and yet so many, like me, dont think they would ever be affected. 

Ali B

Hi

Have you had much bleeding at all after the procedure?

Nikii72

Hi,

 

I had the procedure on Thursday and so far, only brownish coloured discharge. Not any bleeding yet. My stomach feels a bit uncomfortable but the pain has eased off. 

Have you had LLETZ too ? 

Jazza
Jazza's picture

Hi Nikii

Firstly, your lovely husband and colleague are stars for chasing you all the way to a smear test, and well done you for getting it done. The topic of raising awareness about the importance of cervical screening is very close to my heart.  I stopped going for smears when I was 50, for a multitude of reasons.  It's sad for me to think that at no point did I ever get any good support to get a smear test - not even from the 2 GPs who simply reminded me but made no further effort to support me e.g. simply asking why I had stopped attending,or if I had any concerns about the test, could have started a meaningful conversation.

I have been raising awareness about the importance of cervical screening tests since my diagnosis, about 3 years ago. Once I'd decided to be very open about my cancer it became a natural follow through to say how important screening is. I've always liked talking to strangers (those who also like to talk to strangers) and I seem to have become quite adept at turning a conversation round to cervical screening. A recent example is as follows: I went into a small shop with just one 30 something shopkeeper; she was very friendly and we started talking about what the fashion colours were for for this season to which I replied that clothes are great but health is much more important and that 'you know I made a really bad health decision about 13 years ago'. She was curious and asked what that was, so I said 'well I've had cervical cancer and my bad decision was to stop going for smear tests'. She pulled a face then admitted she'd never been for a smear test so to cut a long story short I reassured her about her reservations; quite often women will share quite a lot about themselves (I guess because I am so open) and I always say don't tell me more than you wish and I promise that I am always confidential (very important). I gave the woman a Jo's cervical screening mini-factsheet (I always keep a few in my bag) and told her she could call their helpline if she wanted to discuss the smear test further. I don't go out of my way to raise awareness, it's more a case of when an opportunity arises - it beats talking about the weather. Most women I talk with are up to date with screening; so tell them well done and to keep it up, I also inform them that 1 in 4 women don't keep up to date which means someone they care about probably needs some support. I suggest, that if they feel they could, it would be great if they could check around their family and friends - I also tell them about Jo's and offer a Jo's mini-factsheet. So far, I've probably talked to about 300 women and the occasional man (I'm retired so have some time); I have been encouraged in that I've had a lot of positive feedback and it has become a very rewarding thing for me to do.  Experiences like yours and mine puts us in a strong position to persuade and if you are passionate to put the message across, as indeed you obviously are,  that will transmit and most people listen.

Sometimes, when I tell women I stopped going for smear tests, I get replies such as 'silly girl'. I've learned to welcome that remark as that's my opportunity to inform them that many women don't attend and that one or more of those might include their sister/niece/daughter/friend/valued colleague/mother etc!

If you prefer, another good way of awareness raising is to distribute Jo's info. Sometimes I will go into a shop and just say to some affable looking staff member that I'm raising awareness about cervical screening and offer them a Jo's leaflet to put in the staff wash room or rest room. Quite often people ask if I have more leaflets so I tell them they can easily get more via the Jo's website.

Well, I could go on. Thankyou for sharing your lovely story and happy awareness raising. 

xx

 

 

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery 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
55

Hi Jazza

I think you raise a valid point in your post when you say that it would have been useful if your GPs had asked what was putting you off attending a smear test. It's an issue I feel needs addressing especially for post menopausal women; I have been advised to start HRT as they wonder whether being post menopausal has given me a false positive in terms of the grade of dyskaryosis. It has been a steep learning curve for me finding out about how I can make future screening clearer (am not even sure if I am post menopausal as had a period last May so have requested a blood test to find out my oestrogen levels and smears aren't too uncimfortable atm). My daughter was given health education pack at primary school about periods & what to expect  including sample sanitary towels - wouldn't it be great if women were offered similar packs as to what to expect in the menopause & how to.combat vaginal dryness etc so that they were not so much living in fear of the test being painful & didn't have to fumble around funding out information ? I recently saw a clip on the news about how female competitive swimmers can use an app to communicate with their (often male) coaches about their menstrual cycle without the need to talk to them face to face. Wouldn't it be great if we could all log information on an app rather than having to muster the courage to have face to face conversations in a 10 minute time slot? Of course many of my parents' generation (80 +) do not use technology but it may be a way forward for some of us. Just a thought! I think it is sad that some people are so judgemental about ladies missing smears & it really isn't helpful when they are!! You are doing a wonderful job of spreading the word!!

 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
55

Hi Jazza

I think you raise a valid point in your post when you say that it would have been useful if your GPs had asked what was putting you off attending a smear test. It's an issue I feel needs addressing especially for post menopausal women; I have been advised to start HRT as they wonder whether being post menopausal has given me a false positive in terms of the grade of dyskaryosis. It has been a steep learning curve for me finding out about how I can make future screening clearer (am not even sure if I am post menopausal as had a period last May so have requested a blood test to find out my oestrogen levels and smears aren't too uncimfortable atm). My daughter was given health education pack at primary school about periods & what to expect  including sample sanitary towels - wouldn't it be great if women were offered similar packs as to what to expect in the menopause & how to.combat vaginal dryness etc so that they were not so much living in fear of the test being painful & didn't have to fumble around funding out information ? I recently saw a clip on the news about how female competitive swimmers can use an app to communicate with their (often male) coaches about their menstrual cycle without the need to talk to them face to face. Wouldn't it be great if we could all log information on an app rather than having to muster the courage to have face to face conversations in a 10 minute time slot? Of course many of my parents' generation (80 +) do not use technology but it may be a way forward for some of us. Just a thought! I think it is sad that some people are so judgemental about ladies missing smears & it really isn't helpful when they are!! You are doing a wonderful job of spreading the word!!

 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
Nikii72

Hi Jazza,

Thanks for sharing. You really are inspirational. It's such a shame that you had to go through all of this. Maybe if you had someone like you about then, it could have been prevented. It's great what you are doing and I am sure you will save many lives. 

I hope I too can spread the word of how cervical screening is so important. 

Sarah868220

I've never missed a smear test but my most recent one showed I had abnormal results, which following a biopsy showed CIN3 cells so I had a LLETZ procedure and luckily it confirmed it definitely was just CIN. Thank goodness for smears as if I had left it there's a chance it could have progressed to cancer! The whole process was managed really brilliantly - the nurses couldn't have been more reassuring and I was seen for both the biopsy and the LLETZ within 2 weeks of the results (and for anyone about to go through it, the biopsy was a little nippy but I geuinely didn't feel anything for LLETZ, just a little crampy after). Now I just need a normal smear at my GP in 6 months time and touch wood it's all back to normal.

I actually used it as a 'learning moment' at my work. We start meetings with a 5 minute moment on any safety or wellbeing messages. In the room I shared it with (the HR function), a few others had been through it or had been putting their smear test off and said they'd book it now. These slides were shared for everyone to roll out on their contracts so it's reached a few hundred people. Usually abnormal cells are so easily treated if caught early - people just need to be more open talking about their experiences to encourage others to book their smears.

I guess if work isn't an option, you could use social media to raise awareness or have some sort of bake sale to raise funds?

Jazza
Jazza's picture

Hi

I really like the idea of starting meetings with a 5 minute moment for safety or well being messages. My meetings at work used to have 'safety' towards the end, but 'wellbeing' is great inclusion - particularly at the start of a meeting.  Sarah, sounds like your 'learning moment' had immediate effect, especially good that it reached a few hundred people.  I could have done with being in on such a moment, maybe around 10 years ago.

x

 

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery 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
yogibooboo

Hi there,

I'm concerned as I had abnormal ps nearly 20 yrs ago, Colposcopy/Biopsy (can't remember result) then laser surgery a few months later.  I have ALWAYS done my pap smears and they have been normal until 14th Feb, 2020, found out I have HPV (news to me), Colposcopy on 24th February, doctor said probably CIN 2 or CIN 3.  Exact result was confirmed 26th February.  I have lost considerable amount of weight for my petite build over last few months (unexplained) and had extreme fatique in Jan/Feb this year but feel fine otherwise.  I'm booked in to have  LEEP surgery on 12th March.  After reading some of these posts I'm not reassured that all will be fine as my doctor indicated last week???  As CC can take 10 to 20 years to develop and it's 20yrs since my first abnormal pap smear.  I'm 63 yrs young, yes I've had regular pap smears but never knew I had HPV till two weeks ago.  Does this increase risk even further?  I would be grateful for any further insight as like many of you I'm driving myself crazy waiting for surgery to be over and dealt with results cleared...xxx

 

First Abnormal Pap Smear 2000

Colposcopy/Biopsy 2000  (Results - can't remember)

Laser Surgery on Cervix 2001

Cont/d Pap Smears as req'd to present

 

Nov 07, 2002       Dx Type 1 Diabetic

Dec 22, 2017       (Stage 1 BC)

Feb 14, 2020       Ab Pap Smear, HPV +

Feb 24, 2020       Colposcopy/Biopsy suspected CIN 2 and 3  - Results confirmed 

Mar 12, 2020       LEEP (LLETZ) scheduled surgery

 

Jazza
Jazza's picture

 Hi yogi

 99.7% of cervical cancers are caused by HPV, however 80% of women get HPV at some point in their lives and only a small minority get cancer (more likely in women who don't keep up to date with smears).  HPV  is cleared by the immune system in about 90& of cases. The thing about HPV is that it can lie dormant in the body, in which case it is neither detectable by testing nor does it cause problems.   However, dormant virus can reactivate and then it is detectable through testing and has the potential to cause cell abnormalities which may become cancerous.  Your treatment 20 years ago sounds like it resolved your problem, at the time, as your Pap smears have been normal until recently.  During the 20 years since, you may have been newly infected with HPV (possibly a different strain) or you've had the virus, since before your first treatment, which has reactivated.  I'm not sure that HPV testing was done 20 years ago, so you wouldn't have known then.

 Recently the screening programme has changed to HPV primary screening and only if a patient is HPV positive are the cells checked - I don't know if you have HPV screening where you live; otherwise you had an HPV test on the basis of abnormal cells.

 There can never be guarantees, but you've kept up to date with your Pap smears and your situation sounds highly optimistic to me.  In all likelihood your cells have only become abnormal in the last few years and will be removed before they have a chance to become cancerous.  Then you will have tests to check if your problem has been resolved.

 Sorry, you are feeling so anxious at the moment. Getting unexpected results then waiting for treatment and then more results is the worst time for emotions.

 x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery 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
yogibooboo

Thank you Jazza, guess I just have to wait like everyone else.  HPV was positive in recent results which I wasn;t previously aware of so hopefully the LEEP will do it's job fingers crossed. :)

Nikii72

Good luck to everyone. Still awaiting my results and telling everyone I can about the importance of smears. 

 

Would like to do something at work involving awareness but as I work in domicilliary care for the elderly, I dont think it is the right target audience. 

More Information

Abnormal cervical cells and treatment

Read about HPV