What were your waiting times?

Hi, 

 

My first post here, so wanted to begin by saying thank you to all of you for your previous posts and apologies if this has been asked before, I couldn't find anything.

 

I've had regular smears and all came back fine until my last smear on the 11th January which showed HPV positive and high grade severe dyskaryosis. 

 

Every day since, I'm checking my post for an appointment letter for my colposcopy, but after some reading today, I suspect this could be weeks or even months. I find this really worrying if I can go from zero to HPV pos + CIN III in such a short space of time. 

 

I'm just wondering how long everyone else had to wait for:

 

1) colposcopy appointment letter

2) your actual colposcopy appointment 

3) results of colposcopy 

 

Thank you. I know everywhere is different but at least with an average timeline understanding I can manage my own expectations better. 

Hello,

I had by smear on the 18th December, results on the 7th January and had the appointment for colposcopy with it for 12tg Jan. I had colposcopy and LLETZ and was told 3-4 weeks for results, but will call at the 2 week point on Tuesday to check!

 

hope you're ok, waiting is the worst part, if I was you I would call your colposcopy clinic to ask in regards to an appointment!

 

april x

Thank you, I think I'll give thrm a call tomorrow. I suppose the worst that can happen is that they tell me a general waiting time to expect and the best is that they book me in. 

 

I google searched my local clinic and it just came up with the gynaecology department. So I'm guessing they're best to call. 

 

I wish you the best of luck with your results lovely xx

Update from me: 

Tried calling but got no answer. 

 

Then my post came and I had a letter dated 19th January saying I have an appointment tomorrow 26th January. 

Update from me (as I know how upsetting it can be when you're searching through posts to find the original poster didn't update, so I hope this helps).

 

Had my colposcopy three hours ago. My appointment lasted about 70 minutes. 

 

I arrived at the socially distanced set up waiting room. My appointment was 45 minutes late, which was fine. 

 

When I was taken through there was the consultant and a nurse. I sat down and the consultant asked me a few questions like do I have children (mine are both older teens), and whether I take the pill and which pill.

 

Then she asked if I had any questions and I went through the list I had written down beforehand. 

 

I asked:

 

- If they see cancer would they tell me there and then? She seemed surprised by the question but said yes.

- Will I have my treatment today? She said IF she can visibly see high grades cells through the microscope then they may do treatment there and then with my permission.

 

- Will I find out the type of HPV found? She said a cervical smear in England only tests for HPV 16 & 18, so by testing positive it is for one of those.

 

- I'm due to have a pill break next week, is it best to skip the break? She said we'll discuss that depending on what happens today - but then we forgot, so I'm not going to have a pill break.

 

- When and how will I receive my results? It's usually 2-4 weeks by letter but covid has delayed by 2 weeks.

 

Then I was asked to undress from the waist down behind a curtain. I got onto the chair/bed and sat my bum to the back and covered myself with the paper towel they provided. 

 

After I said I was ready, the nurse asked me to move bum forwards closer to the edge of the seat and to lie back and prop my legs up in the stirrups. I expected the stirrups to be straps that looped around my feet, but they were just sized right to rest my calves on with my feet hanging off the end. No straps. 

 

The consultant brought her chair over and the nurse raised the chair/bed higher. 

 

Then the consultant came in to view and the TV screen I hadn't even noticed turned on. 

 

I actually really found it interesting seeing everything happen. I knew from my research that the cells were very visible. They were visibly red around my cervix opening. 

 

I could feel slight discomfort at the speculum they put in to open you up, but I had no feeling when she poured the clear liquid on, even though they said it may sting for just a moment. 

 

She said they were definitely high grade cells and showed me re the colour changes that had occurred on screen. I couldn't understand the colour changes myself and was happy not to ask them to explain further. 

 

After that they asked me about five times if I was definitely happy to have the treatment there and then. I confirmed. 

 

So the nurse got a big square thing, like a giant plaster and stuck it to my left thigh (it was, pretty cold but fine). This she explained, was part of the LLETZ treatment and they connect the machine to you because of the electrical current. I didn't feel anything electrical at any point, just to reassure anyone that may be worried. 

 

I was given four injections of local anaesthetic.

 

Then they faffed around for quite a bit because the consultant wanted a bigger speculum to open me up so she could get to all of the cells with the LLETZ, but there was only one that was too big for my vagina size in the room!

 

In the end there wasn't another option so they lubricated it and put it in slowly. It was uncomfortable and cold but it was okay.

 

Then came the LLETZ. It was really fast, just like slicing a piece of soft fruit. The lump of flesh was then put into a tub that had liquid inside it. It looked massive on screen so I asked how big it actually was and the nurse showed it me. It was about the length of a 2p and the width was varying. The consultant said that when it is assessed they will measure it exactly but that the depth was 10mm.

 

And then she did the same again. The nurse asked if it should be put in the same tub but the consultant said no, two separate tubs. A left and a right. 

 

The second was about the same size as the first.

 

After that they also did Diathermy Ablation which they said would work to treat anything that was left and to cauterize the open wound.

 

On the screen the redness had turned to fresh white underneath the removed flesh and after this treatment it went to almost black and shrivelled. 

 

After that it was all done. 

 

The whole time the nurse chatted away to me. Biggest tip she gave that I highly recommend was nice slow deep breaths, relax your shoulders, your bum and soften your legs. She said it several times and it immediately eased any discomfort I was feeling. She explained that as soon as you tense, you cause yourself pain in the vagina, so as long as you relax, you will barely feel anything, and that was true.

 

Afterwards I did feel like I'd just given birth, possibly because they'd had to use the speculum that was too big really for my vagina. EDIT: By the following morning, this feeling had subsided, so I do think it was due to the speculum stretching me so much. 

 

They asked if I had any more questions and said if I remembered any afterwards I was welcome to call on the number they gave me on an after care sheet of paper. 

 

The consultant explained that I wasn't to have sex for 6 weeks or swim or use a tampon. Bleeding may last for around 4 weeks. 

 

The discharge over the next day or so will likely be some very odd colours because of the liquids they've used and that's fine. 

 

If I notice my discharge starts to smell then that is an infection which can happen and I should call my GP in the first instance for antibiotics. Any problems with the GP, then just to ring them instead. 

 

I was then taken to a private seating area with armchairs and another nurse offered me a coffee and chatted to me for 10 minutes until they were sure I felt fine at which point I could leave. 

 

Two hours later and I have taken Paracetamol and Ibuprofen and I feel like I have bad period pains in my lower abdomen and also in the bones at the bottom of my back and muscles in my buttocks, so I have a hot water bottle. 

 

My walking is very slow and gentle too. I was pleased I had someone to pick me up and it turned into a take away night as I was definitely in no position to make dinner. EDIT: I felt like I could walk fine by the following morning, but it does feel like I have a really dry tampon inside me so is a little uncomfortable when I walk. The morning after I woke with period pain in my stomach and slight back ache. 

 

Really hope this helps to ease anyone's concerns. I really struggled beforehand with the not knowing what happens. 

 

4 Likes

So nice of you to write all that, I hope your results are good ❤️

Thanks Chrisy, 

 

It's odd as before my treatment yesterday I was so anxious at whether it may be cancer, but afterwards I just felt relieved that if they do find out it's cancer, it's all gone. Xx

Thank you for including so much information, this really helps as I have mine tomorrow and am terrified.

I have to go on my own. My partner will be looking after our baby at home and my parents are shielding. 

Did you find you could walk ok afterwards? You mentioned your walking was slow afterwards. But  would you have managed, say a 20 minute walk afterwards? 

 

 

Hi Jen, 

It took me about 20 minutes to walk from the hospital to the car afterwards. Possibly a 10 min walk pre procedure. 

 

I had to go alone as the letter said due to covid we're not allowed anyone with us. 

 

Just be careful and don't overdo it. I am certain most of my pain directly afterwards was due to the too-large speculum, which I'm guessing is a very unusual occurance. 

 

Good luck tomorrow. Please do let me know how you get on lovely ? 

Thanks. I know my partner can't come in the hospital with me, but I was going to drive myself. I've rang them as I would have had to take my baby with me, but they've said absolutely not.

Instead my partner is taking a few hours off work so can drop me off and stay with baby. The lady on the phone though I was crazy for wanting to bring baby, but I've not had much information at all and had no idea what to expect. Thanks for your post that really helped. 

Good luck today. I shall keep you within my thoughts and surround you with love and light. 

 

My NHS leaflet that was clearly made pre-covid said you can bring children but we do not have any services to babysit them and so you must bring an adult to look after them too. But it came with a separate letter saying not to bring anyone.

 

I was surprised actually as when I got to the reception for the clinic it was split into two halves, the first with a handwritten poster saying children's reception. But I think it just happened to be next to a children's outpatients clinic and they shared the same reception desk. 

 

Sending you much love for today xx

I had my LLETZ on Tues 5th Jan and got my results yesterday so waited 3 weeks! x

Hi, I'm new here.

I waited 1 week from fiding out my smear test results and receiving Colposcopy appointment.


I had a smear test on the 9th January 2021.

A nurse called me on Friday afternoon the 22nd saying that my results call for a refferal to a treatment and that I will receive a letter.

On Monday I received a digital refferal letter - I was asked to book an appointment at either two hospitals they gave me to choose from. Both had a waiting time of around 40 WEEKS! I called one of them - the nurse said only urgent referrals are quicker. I didn't know whether mine was urgent or not.

I called GP at Hand to give me more hospital options and asked to tell me if my case is urgent. They said yes - moderate cell changes. I followed up the same day. Just kept calling to sort it out.

I got a call yesterday 28th Jan from another hospital and was given an appointment for today the 29th Jan.

Waiting for the results of biopsy.

Now just wondering if I was very diligent getting an quick appointment OR my case IS quite bad/serious.

Wishing you all best of health!

Update from me: 

It's been four days since my LLETZ and Diathermy Ablation. 

 

I'm still getting uncomfortable period type pains but I'm also getting weird painful throbbing in my buttocks at the side of my coccyx and in my lower back. I had SPD when pregnant 15 years ago and I've felt pain like that too. 

 

I've been using naproxen, Paracetamol and Ibuprofen (at varying times) and also a heat pad. Drinking chamomile tea helps with muscle cramps too. 

 

Sometimes it's almost felt like weird trapped wind pains high in my stomach. 

 

I have seen other women post on here who have had no issues whatsoever, so if you're reading this and thinking OMG! Please don't think that your experience will be the same as mine.

 

Discharge wise I've had an almost clear water type liquid that has been coming out since day 1. 

 

It was tinged a funny blackish colour at first, now its more pinkish. It hasn't changed in its frequency and I'm changing pads about once every three hours (side note - I haven't used pads in years! Really impressed with how absorbant they are now).

 

I've had some weird things come out alongside the discharge. 

Day 1: tiny black bits from the cauterization. 

Day 2: weird long stringy bits that look like pieces of orange flesh and the most disgusting lump of flesh about two inches long that looked like a half shrivelled umbilical cord! Now that scared me!

 

Day 3: No extra bits at all yayyy!

 

Day 4: bigger black lumps

 

My mental health: I'm trying to stay as positive as possible. Realistically I know it's all likely to be absolutely fine, but I find myself researching wondering if my case is different.

 

Lastnight I had a weird dream about it all. 

 

I sit wondering if I've been on time with my smears, which I have. And then tested HPV positive for 16/18 and then got to the colposcopy and they decided to do LLETZ there and then instead of just taking a punch biopsy. AND the fact that a bigger speculum was required to try and get to all of the visible abnormal CIN III cells. AS WELL AS them taking a fairly large amount from what I can gather, then requiring Diathermy Ablation to try and get any left over cells... Then is that going to mean bad news? And with all of that combined, does it mean mine must be fast growing?? 

 

And then I try and talk myself round. Telling myself that cervical cancer is one of the most treatable cancers. 60% of people get good results after LLETZ. Even if it was cancer, I'll most likely be okay, I think.

 

Feeling a little sorry for myself today and to be honest it's probably because I didn't have a great night's sleep due to the period pain. 

 

I hope others who are reading this don't feel so alone in their thoughts now that I've shared mine with you all ? lots of love xxx

1 Like

This has been such an interesting read. I've had my letter confirming high grade and HPV. Low to high in just 12 months so my mind has gone off on one.

Waiting for my appointment to come through. This is the worst. I've got myself so worked up I'm considering going private if I havent got an appointment through soon. 

This will be my second colposcopy. I will be armed with questions this time!!

Thank you for sharing your story.

Thank you for sharing your experience.

It makes a good read.

I'm waiting for my colposcopy app to come through. Low to high grade cell changes and high risk HPV in a year. I didn't realise the changes could happen so quick. So my mind has gone in to overdrive,

Hi llamalou, 

From all the reading I've done, I think most people who are found to have CIN III/high grade severe dyskaryosis are seen within two weeks. I haven't been told that by any medical professionals but I've seen several people on this forum mention it. 

It looks like we are only days apart on our smear and colposcopy. 

 

Did you have LLETZ too or a biopsy/both?

Did they give you an indication of when to expect your results? Xx

Hi Natalie,

I'm pleased to have helped in some way. Waiting is so difficult isn't it. 

My letter for my colposcopy was, dated 19th January, but didn't arrive until the 25th January and my appointment was the very next day. 

 

On that basis, don't be afraid to give your colposcopy clinic a call to ask if covid is creating any delays with letters being sent out, and ask when you may expect yours. 

 

I considered going private but I've read several cases from the forum where people looked into it and it would take longer going private than sticking with the NHS. 

 

Hope you're okay lovely ? x

Update from me: Day 5

Inside my vaginal definitely feels a lot better now than the day I had my LLETZ done. 

 

But the outside of my vaginal has become really sore. Almost like nappy rash!

 

After searching on this fab forum I can see this is something others over previous years have mentioned experiencing due to your body not used to being kept in constant wet and damp conditions. 

 

Today I'm going to try some Always Sensitive Sanitary Pads and some sudacrem. If they don't help, I'll call the GP or Pharmacy for advice. 

 

Lastnight I tried sleeping commando (recommended by a previous poster from years ago). Unfortunately, it didn't work for me as I constantly woke up feeling my skin stinging due to the watery discharge.

 

The bath towel underneath me was fine. It just seemed to gather and stick to my skin.

Can't wait to have a nice long and relaxing bath!

 

Hope you're all doing okay ? xx

Hi Natalie,  may I  ask?  was the first time  12 months ago, you found to have  LOW grade? then did they do anything?   

after 12 months the from LOW change to High grade?

Thank  you,  Springseason