Long term changes after LLETZ

Treatment for cell changes (abnormal cells)
1

Hi,

I’m wondering if others have experienced long term (1 year plus) changes to their periods after having LLETZ treatment. All the leaflets I received and staff I spoke to said to expect a 6-8 week recovery but I’m now nearing 18 months and am nowhere near “back to normal”.

I received smear results showing HPV positive with CIN2/3 in September 2020. I had a colposcopy 5 days later (which really impressed me given the state of the world then). I also had LLETZ treatment at that appointment. Got the results back, confirmed CIN3 but no cancer, book a follow up in 6 months.

I had that appointment in March 2021. My first cause of concern was the nurse who did the smear asked me about my cone biopsy. As far as I’m aware that didn’t happen (maybe I’m confusing jargon and treatments but I’m sure a cone biopsy is more invasive and require general anaesthetic. I know I only had local). She said my records state a cone biopsy. I’m sociably awkward and was already half naked on the table at this point, so I didn’t question more.

The results for that came back negative and I should book another appointment in three years. This was the second thing that worried me, as everything I’d read from the hospital and the staff I’d spoken to said it would be yearly check ups for a while. But I brushed it off because, you know, all clear, that’s a good thing, right?

Only things haven’t changed. In fact they’ve gotten worse. I had a couple of telephone appointments with my gp about the situation before the 6 month check up. He just told me it was normal and all women experience pain during sex sometimes. Obviously no further checks were done, as it was over the phone.

I’ve since moved abroad and am still trying to get my head around the new healthcare system. I have no idea if I can see a gp for a smear here or if I have to go to a gynaecologist. The language barrier and having a boyfriend who likes to bury his head in the sand and just say everything is ok (he’s the one with the language skills. Funnily enough, cervix was never on my vocab list and I know from my one attempt at speaking to an English speaking doctor that they don’t call a smear test a smear test here, and saying cervical screening didn’t help much either. And they’re all still on the phone, so I can’t even do mimes or anything. But now I’m getting off the topic, sorry!) doesn’t help.

Anyway, the main point is that since having the LLETZ in September 2020, my periods have not gone back to normal. They’re still currently around every two weeks, though much shorter than they were before, now one/two days bleeding, when before I was a 6/7 day girl. And the blood isn’t like it was before, I can’t remember the last time I had red blood, it’s now constantly closer to black.

I call this period because it’s when the flow is most constant. But I honestly can’t remember the last day I went by without some sort of discharge in my knickers (honestly, it’s costing me a fortune in pads!). It varies between dark brown and pva glue like, pink and watery and everything in between. I might not be explaining it well, but I call this discharge because it feels different to the times I call period, if that makes any sense…

And sex is still pretty much a no go. Still causes bleeding and it hurts for around 5 days afterwards now. It wasn’t like that before. Before the pain wore off quite quickly.

I’m still with the same partner and I’m as sure as I can be that it’s not an STD causing this. I was clear at my last test, which they gave me at the same time as the smear and he says that he hasn’t slept with anyone else, so I’m pretty sure it’s not that.

So, I guess what I’m wondering is if anyone else has had such long term issues after their treatment? I’m worried that I may have been mixed up with someone else and given the wrong results due to the discrepancy with the treatments but part of me also feels like I’m making a big fuss out of nothing and taking away from people who need attention more than me if I push this. Is this “normal”?

Sorry it’s so long, I guess I just had a lot to get off my chest. Thanks!

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Hi there, hope you are ok? Just wanted to say that I think you’d be within your rights to ask for a review of your results and further intervention to seek clarification for yourself - you know your own body and if it’s not right for you, then tell the specialists and see if they can review your situation.
I have had similar physics response following my first Colposcopy - LLETZ and biopsy - of which results show CGIN - I’ve had 28 days of bleeding that varied from light clear discharge with streaks of blood ‘spotting’ through to massive bleeds running down my thighs whilst walking - I couldn’t leave the house for three days it was so bad - I’m on day 31 now and have had 3 non-bleed days (thankfully!) but have got recalled for a second LLETZ at the end of March - I’m dreading it as I have a psychological issue after IVF/traumatic delivery so just don’t think I can face it under local anaesthetic again!
I haven’t even considered having sex yet as I’ve still got ‘twitching’ pains across my lover tummy area and it feels inside like I’ve still got the speculum inserted at time (when I sit down!) so can’t comment on that sadly.
I hope you get some answers soon and wish you luck with getting help - would a return to the UK for a consultation be an option?
Julie xx

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Hi Little1orange,

I’m really sorry I missed your post when you first left it - it’s over a month now but I’m sure things haven’t changed unless you’ve finally got some help. What you are experiencing, and for such a long time, is not normal. Regardless of whether it was a cone biopsy (yes, more radical and under GA) or LLETZ, you should not be suffering like this. It must be really difficult when you’re now in a different country, but you will need to push to get referred to a consultant gynaecologist for this - you’ve not been right since September 2020 and it’s not getting better - that’s a long time. I hope you can get some action soon. X

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Hi, I have been experiencing the same issues as you. I had my Lletz done in August of 2022. Almost 6 whole months later I have had no periods. What concerns me the most is that my periods were irregular before, from the moment I started menstruating, so for me this would he normal however into my late twenties thirties I managed to maintain a semi regular flow. I had them once a month like regular women. I decided to have the Lletz because the nurses made it sound like I would drop dead the next day if I didn’t!! That is no exaggeration, I believe it was a tactic to urge me to have the treatment. Iam not stupid nor ignorant, I understand the danger of not having it but now I am a anxious nervous, crying mess. I experienced severe pain three weeks after the treatment and I was repeatedly told that I had caught an infection by the colposcopy nurses. As I already knew it was not a urine infection or any other kind of infection becuase the anti biotics did nothing. I called back and just wanted reassurance and I was basically told that I shouldn’t keep calling them becuase they have done their part and now my gp needs to investigate. The gp told me it is the responsibility of the colposcopy department. It is now January 2023 and I have basically given up that my body will be back to normal. I am worried and depressed because of this which isn’t helping. I have lost weight, constant cysts in armpits which has never happened before, in my groin and in my throat so now I think this treatment had an adverse effect. I am lost and just don’t have the energy anymore to find out what is wrong especially when you can just about get ak appointment and when you do you are treated like you are doing something wrong by trying to find out.

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Sorry to hear about your experience, it doesn’t sound like you have had the support you need.
First of all, as you are reaching 6 months after your lletz you should be having a follow up appointment, often called a ‘test of cure’. Has this been arranged? This would be an ideal time to get colposcopy to investigate what’s happening.

I had two lletz in 2021 and this resulted in long term changes to my periods. I’ve recently been diagnosed with stenosis and had dilation to try to resolve it. It did take a few attempts at insisting there was a problem before gynecology did something about it. You do need to be persistent.

However, if you feel your care has been below the standard you should be expecting, you could also investigate the complaints procedure. You need to feel confident in your care.

Let us know how you get on. Xx