Losing count of colposcopies now...

Hi folks

I've had around 5 or 6 colposcopies, about 20 smears since my 24th birthday (2014), 2 lletz procedures, a cone biopsy, and another procedure under anaesthetic to cauterise cells on the inside of my cervix. I'm expecting a partridge in a pear tree at this rate.

I've just had another abnormal smear, with more dyskarosis, still got HPV, and guess what another colposcopy. I've frankly lost my sense of humour about it all now. It's getting to the point where every 12 months I have to have some kind of procedure which is really getting me down and making me anxious. I can't imagine I have much of a cervix left!

Has anyone else had this many colposcopies and treatments? I'm terrified of a hysterectomy, but maybe a Trachelectomy is an option? I have an appointment with a consultant privately now because I just want this over with ?.

Any advice appreciated, I hope this doesn't sound too ranty!

Sarah x 

I don't have any advice but I'm sorry to hear you're going through this. I've been monitored constantly for about 15 years but only just had a treatment. All I can say is, the doctors do know what they are doing and will look after you. It's very frustrating if the HPV infection just doesn't clear though.

I hope you get some closure soon.

Xx

Hi Sarah

I can understand how wearing it must be to keep going through treatments; because you are young the medics will go to the nth degree to preserve your reproductive system.  Conversely, in my experience, the medics seemed overkeen to dispense with my body parts because I'm older - assumed I was OK to have my ovaries removed during my hysterectomy.

It seems to me we don't always get the discussions to properly and fully explore options - possibly an NHS time pressure thing.  Maybe by going private you will get the time and support you need to understand better what's right for you going forward.  I'm also wondering if some counselling might help clarify where you want to go from here?

x

Hi Sarah, sorry to hear what you're going through. I've had 2 lletz and a cone biopsy, couldn't tell you how many smears and colposcopies. Thankfully I'm hpv negative for now. I had a lletz then cone biopsy originally (for cin3 and 1a1 cancer), normal smears for a couple of years then cin2 so another lletz (hemoraged after that). Now on yearly smears and colposcopies. I was told if I get another abnormal they'd advise a hysterectomy. Not sure if you have or want children but I would ask about the trach or hysterectomy. Its so stressful the constant checks and fear of more procedures. I dont know if it made a difference but my consultant advised me to boost my immune system to fight the hpv so I try my best to eat well. I also stopped smoking as that's known to increase risk of cervical abnormalities and persistent hpv x

Hi Sarah, sorry to hear what you're going through. I've had 2 lletz and a cone biopsy, couldn't tell you how many smears and colposcopies. Thankfully I'm hpv negative for now. I had a lletz then cone biopsy originally (for cin3 and 1a1 cancer), normal smears for a couple of years then cin2 so another lletz (hemoraged after that). Now on yearly smears and colposcopies. I was told if I get another abnormal they'd advise a hysterectomy. Not sure if you have or want children but I would ask about the trach or hysterectomy. Its so stressful the constant checks and fear of more procedures. I dont know if it made a difference but my consultant advised me to boost my immune system to fight the hpv so I try my best to eat well. I also stopped smoking as that's known to increase risk of cervical abnormalities and persistent hpv x

I'm.in a very similar position. For the last 6 years I've had 6 monthly smear, always been hov positive. I've had 3 lletz, 3 punch biopsies and 3 cervical dilatation due to stenosis. I don't have children and have been trying to conceive for 5 years. I'm coming up to 31 now. Currently waiting for my smear results done on the 22/04. And a transvaginal scan results too. I understand how frustrating it is. Always hoping for a negative result. Hopefully you will get one soon xx

Hi there,

Sorry to hear about all the procedures you’ve had to have done.
I’ve had a very large lletz with post op haemorrhage which then required stitches. I then had to have dilatation which got postponed due to COVID, they also did a small lletz to remove scar tissue. I’m now facing 5 days of spotting then my period finally happens, then I’ll get heavy flow then it will sort of stop until I get cramps and it starts up again.
Had issues with post coital bleeding which stopped me having proper sex through anxiety of more irregular bleeding. Wondering if I need to go back to colposcopy for another dilatation or whether I need to avoid doing anything and try to gain some acceptance. I’m also 31. I broke up with a not very nice boyfriend but would like children in the future. It must be really difficult for you xx

So sorry to hear about you haemorrhage. I’ve just had a large Lletz under a GA. This was something I was worried about as I had a large bleed after my biopsy. I also haemorrhaged after having both my children. Can I ask how soon after your Lletz this happened? I had the procedure a week ago. xx

Hello!
Please don’t worry! Mine was immediately post op, literally walked into recovery and sat having a cup of tea and was back to theatre straight away. Hope you’re recovery goes smoothly xx

Oh gosh, what a shame and how frightening for you. x

It was horrific. The whole process was traumatic and I’m still having issues nearly 2 years later with spotting for long periods pre and post period.
Us ladies are complex unfortunately!!
I hope you are recovering well and feeling okay within yourself xx

Really sorry to hear how much trouble you ladies are having. I will just summarise my story because I think it demonstrates why colposcopies are necessary - so unpleasant as it is, they are looking after you properly - especially as you are very young.

I had two LLETZ and a deep knife cone biopsy 20 years ago in my early 40s. The immediate colposcopy post the last surgery was clear, but of course HPV wasn’t tested for back then. Subsequent yearly smears were all clear, and the last was in 2017, when I was clear and told I would not have any more because I’d be 65 in 2022. Roll on to 2020 and I start having postmenopausal discharge. In November I have the first colposcopy in 20 years, which confirms cancer. In December I find out it’s Stage 3 and has spread to my lymph nodes. Talking to the oncologist and gynaecologist it is likely it had been growing for 20 years, and the smear tests, they now say, were inadequate as I had so much scar tissue from the earlier ops. If I had received colposcopies along the way, it would have been detected.

So I conclude smear tests are not a good indication in people with scar tissue, especially from a large cervical op. I’ve completed my treatment and I now have ‘no evidence of disease’ (cancer) but they have confirmed I’m HPV positive, so I am still vulnerable. Sounds like a number of you are highly at risk but very young to be having hysterectomies - but they need to protect you from cancer.

All the very best to you all. X

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Hey, I’m so glad you’ve now been given the all clear. Have they told you a plan for monitoring going forward since you still have HPV. I recently found out I’m HPV positive and since I’ve been with my husband for over 20 years I’m assuming I’ve had it for a very long time and I’m less likely I’ll clear it now.
I’m going to have a hysterectomy for high grade precancerous cells, mainly because I have glandular abnormalities as well as CIN 3. My worry is though what happens next if I’m still HPV positive? Will it not just continue to cause havoc in another area? Is it even possible to clear it after so many years? I don’t know a lot about it and the info online isn’t clear. xx

Yeah completely agree with this, they are so necessary. I’ve lost count of how many I’ve had but I’m actually really grateful they are every 6 months!