What were your waiting times?

Ohh that sounds uncomfortable, I hope it passes soon for you. X

Update from me: Day 8

 

I went to a boots pharmacist on the Sunday and spoke with him to ask if it was okay to use something like sudacrem on my sores. 

 

He was clearly uncomfortable with my questions and didnt have a clue so suggested KY Jelly!!

 

At that moment in time I couldn't think of anything worse than more wetness applied to my tender skin. So, I ignored him, went to the baby section, and purchased Bepanthen, along with Always sensitive pads. 

 

I'm pleased to tell you that even after a few hours I was already noticing a dramatic difference. Huge thanks to those from previous years mentioning Bepanthen in their posts!

 

My discharge remains watery but has had more frequent tiny charcoal like bits. This morning in particular it was basically like I'd wiped my tissue on a piece of charcoal. 

 

I'm still experiencing discomfort. I highly recommend the dreamland heat pad from Argos. It goes everywhere with me. It really helps with the shooting pains I get occasionally too. 

 

I've also noticed the more black stuff comes out, the more smelly the discharge is. It is quite metallic and after an hour of having a shower it can smell like I've not washed in days. 

 

I've read many posts on here suggesting that's quite normal. It's hard to know the balance of which point to seek medical advice. 

Update, from me, Day 10: 

 

I got a bit worried two days ago as my discharge started to smell really awful. I couldn't find words to describe it but someone else on the forum said their clinical team had said an off cabbage type of smell is to be expected. That's a perfect description! 

 

Day 10 post LLETZ for me and I'm really pleased to say that the smell really had died down by lastnight. 

 

Today at 10am I went for a wee and when I wiped there was, fresh blood on the tissue for the first time. I looked in the toilet and it was filled with red which was a little alarming. There was nothing on my pad but the usual discharge. 

 

Since then I've started to bleed onto the pads too and the last time I went to the toilet I had a small blood clot too. About just a little bigger than a peanut.

 

I've always had very light periods without clots so that was a surprise but I've read it's normal and so I'm not worried. 

 

I've also noticed from people's back stories that people who are contacted with bad news by phone, are usually contacted within two weeks. So I'm panicking much less now as I'm almost at the two week mark. 

 

Sending huge hugs to anyone that will or has been contacted with bad news xxx

Day 13 update: 

 

The last, two days when I've got out of the shower I've dried myself down below without a second thought. Which for me is amazing progress. It felt like I'd forever be tender and uncomfortable. 

 

The fresh blood on day 10 lasted about three hours and turned back to discharge. Thankfully the smelly discharge completely stopped after my first bleed.

 

On day 12 I bled fresh blood again but only for a few hours. 

Charcoal black bits are few and far between now, maybe one or two really tiny pieces a day. 

 

Still changing pads every three hours due to discharge or fresh blood. 

 

I feel well enough to get back to exercising fully today. 

Day 21 update: 

 

Well, I'm now at the three week mark, so I thought it was about time to update again. 

 

 I've had occasional pains since but nothing too significant. 

 

An example would be lastnight, just out of nowhere. I was sat watching TV and suddenly got sharp, stabbing pains shooting right up my cervix. I cried out in pain, much to my other half's surprise. Google took me to posts about 'lightening crotch' which apparently rarely happens outside of pregnancy. I can assure you, I am not pregnant. 

 

Thankfully it only lasted about 90 seconds and was gone. I went to the toilet to check for any changes but it was still just a yellowy discharge that I've pretty much had for the last week or so.

 

Occasionally, I've had a couple of hours of fresh, sometimes watery blood. But I'd say that's, happened maybe four times across the whole 21 days. 

 

I'm due to have my pill break again in a few days and I'm really reluctant when I know I've not healed fully yet. The last thing I want is another week of pain and then heavy blood on top of everything else. 

Day 21 update part 2:

 

I've seen a few posts now of people who had their LLETZ the same day as me or thereabouts and now have their results. 

So I plucked up the courage and called the colposcopy clinic to see if I might be lucky enough to have my results back yet. 

 

She didn't taken my name and just said that all results are taking a minimum of six weeks due to covid delays. Devastated. 

 

 

These websites were really helpful to me. Huge, amount of detail. 

 

https://healthtalk.org/cervical-abnormalities-cin3-and-cgin/overview

 

https://www.steadyhealth.com/topics/colposcopy-and-then-tissue-like-discharge

Update day 23: 

 

My results letter arrived in the post today!

 

"I am writing to advise you that the histology of the loop excision of the cervical transformation zone, performed on 26th January, has reported CIN- 3.

 

Dr X is arranging for the patients management to be discussed at our next colposcopy pathology meeting in March. It is likely the patient will require a six month test of cure HPV test in six months' time."

It's left me a little confused at first as no talk of margins like others get, and why am I having to be discussed at a pathology meeting?

 

But the sentence saying its likely they'll leave me until test of cure for six months suggests they're not worried?

 

Huge plus is that it has come in a letter and not a phone call and there's no mention of oncology. 

 

What a relief.

 

Sending much love to all those waiting. Xx

I called the colposcopy clinic to help me understand the letter and now feel more anxious. 

 

At first the nurse said it's sent to be discussed at MDT if your smear result was different to your biopsy result. 

 

I explained the results were the same, so she put me on hold. 

 

When she returned she said she wasn't able to speak with the consultant but try not to worry. 

 

I asked about margins and said that other people are told if their margins are clear or not and she said she's not qualified to be able to interpret that information but just try not to worry as they might just be checking they've managed everything right. 

Then she popped me on hold again and explained the next MDT meeting is 16th March and after that I'll receive another letter telling me the outcome of their discussion. 

 

Part of me wishes I'd never called. Feeling really tearful now. Has anyone else been discussed at MDT with good news as an outcome? 

Big hugs Lemon. Sounds like good news though if there is no mention of oncology, and they didn't see anything else in the tissue samples, but completely know what you mean re not getting any news re margins etc. Being discussed at an MDT doesn't necessarily mean there is anything to worry about. It may just mean that they want to discuss the most appropriate next steps eg whether to have another colposcopy now or to wait etc. Stay strong. We are here for you if you want to talk about it ? xxx 

Thank you ? 

 

Update day 24: 

 

I rang up again this morning and the lady was so lovely saying I can ring any time with any questions. She got a colposcopy nurse on the phone who took a look at my file and said that the reason it's gone to MDT is because I don't have clear margins. They did give me a second treatment after the LLETZ of Diathermy Ablation. Which most people only get one or the other. (which explains why one of my first posts in here asking if people had diathermy ablation too didn't get much of a response).

 

So they want to discuss at MDT if I need another LLETZ or if they wait 6 months for test of cure smear. She said its likely I'll have to wait the 6 months on the basis that the diathermy ablation should have got any left over CIN III cells. 

 

She confirmed no cancer had been found and that any cases where they are a bit uncertain results in them talking to a number of specialists in different areas to make sure everyone agrees. 

I'm feeling much better now. And I really feel for those who don't get good results. Sending out so much love to you all xxx

Update day 31: 

Just a little update to say that all is continuing to go as expected. Still some discharge but it's not watery anymore and I'm no longer having to use sanitary pads.

 

On that basis I'm starting my pill break today. Fingers crossed my first period after treatment is okay. 

Update day 39:

 

Only three more days until I've reached the 6 weeks mark!

 

My period was certainly heavier and longer than any of my previous periods and included small clots too, which I haven't experienced before. But overall it was fine. Nothing to be scared about and barely any discomfort.

 

I was very disappointed to go back to watery discharge, I thought that would be the end of it all now. 

 

I'm really looking forward to creating the most luxurious bath I can dream up as soon as I'm able!

 

Most of the people I know had their colposcopy at the same time as me have had their results now. Everyone I've been following who have received their results so far has had positive results which feels wonderful. It really is a reminder that most people really do have a positive experience. So, if you're reading this now, worrying like I was, please, please try and relax. Go and fill your days with positive experiences that, take your mind off the worrying. Bury your head in a great book, or watch a binge worthy TV series on Netflix that stops you from picking up your phone at the same time. Sending you much love ? 

 

I hope you're all doing okay ? xx

Update 6 weeks after LLETZ:

 

CELEBRATING TODAY WITH THE MOST LUXURIOUS BATH!

 

I also came across this website written in partnership with Jo's that has some really useful information. 

 

https://www.rcog.org.uk/en/patients/patient-leaflets/large-loop-excision/

 

The bath was wonderfully hot, beautifully calming, relaxing and just completely amazing!

 

If like me you were interested in watching your colposcopy on the TV screen (or will be watching it at a later date), or perhaps you are just interested and want to know what your cervix can/might look like, then you may really value this website I just came across. 

 

Before getting my smear results this time round I never knew anything about my cervix. I love how this site really encourages people to get to know their cervix.

 

https://www.beautifulcervix.com/

 

Sending those of you still waiting lots of love ? 

Update 6 weeks and two days later: my first ever urine infection cry

I'm 6 weeks post lletz and have been experiencing the following: 

 

  1. Hesitancy urinating with no reason (I thought it was in my head) 
  2. Urinating 2-3 times in the night
  3. Occasional discomfort, but I put that down to post lletz pain

I just happened to mention the above to a friend who is a nurse. She insisted I go and get my urine tested, but I felt embarrassed. Wondering if it was just all in my head. 

 

She couldn't convince me, but what she did convince me to do was buy some urine dipsticks from amazon (100 for under a tenner). 

 

Anyway, they arrived three days ago. And showed signs of potential infection.

 

Today I finally plucked up the courage to take in a sample (I've had some awful experiences with a receptionist there and I really dislike ringing). 

 

I've now been prescribed antibiotics for a UTI. 

 

The reason for my post.... It's so easy to have your urine checked. You don't even need to speak to a doctor or nurse. If you're concerned, get your urine tested. 

 

My nurse, friend said it can become a horrible infection if you leave it untreated. Don't be silly like me. Go get checked even if you think it might be in your head xx

 

Update 7 weeks after LLETZ:

 

No more weird discharge!

 

Very happy!

 

MDT meeting is tomorrow. Really hope they will tell me what they decide tomorrow and not three weeks later. Seven weeks of waiting is such a long time. 

Update 7 weeks and one day since LLETZ:

 

I called the colposcopy clinic this morning. The receptionist went to get the nurse and then returned a few minutes later saying the nurse is in clinic all day and isn't able to talk on the phone but she recognises my name and can confirm my case was discussed at their multidisciplinary team (MDT) meeting yesterday. And that I'll receive a letter in the post with the results of the discussion.

 

I asked if I could get the results now as they last told me that the letters were taking three to four weeks. She said she's sorry she isn't qualified to interpret the results and that MDT letters are prioritised.

 

More waiting then ? 

Update 8 weeks since LLETZ, 2 weeks since MDT.

 

Still no letter. :(

 

So I've called the colposcopy clinic today, explained the situation. They said they'd call me back in a few minutes.

 

90 minutes later I called them back. They said my assigned nurse is on annual leave now and there's no letter been written up on the system so here's the consultant secretaries number.

 

Called the consultant secretary who explained that my consultant and my consultants secretary are both on annual leave now and she will do her best to look into it but from what she can tell there wasn't an MDT meeting on the 16th March.

 

I explained I rang on the 17th March and they told me to wait for a letter as the nurse was busy in clinic but as that's been two weeks now, I'm worried it's been lost in the post.

 

She's taken my number and said she hopes to call me back tomorrow after sges done some digging.

 

Feeling quite fed up. :(

1 Like

Still 8 week after LLETZ and 2 weeks after MDT. Update below is copied and pasted from me creating a separate post.

 

Hi everyone,

In brief, I had smear showing CIN III, then LLETZ at my first colposcopy which showed CIN III and positive margins (meaning the edges of what was removed were still CIN III, so it's likely some CIN III was left behind). But I had a second treatment during my colposcopy called Diathermy Ablation, so was told by the colposcopy nurse that my case had to be sent to a multidisciplinary team (MDT) pathology meeting to discuss patient management for that reason. 

 

The day after the MDT I rang the colposcopy to get results and was told the nurse was busy and wait for a letter.

 

It's two weeks later and no letter, so I called again. My nurse, consultant and consultant secretary are all on annual leave for Easter. So, a consultant and secretary who don't know my case have looked into my file and said there's no letter as my biopsies have had to be sent off to the main hospital in my nearest city to be analysed by the lead pathologist as they're not entirely certain that it's only CIN III there are changes that are borderline and so it may be more than just precancerous cells and so further tests need to be carried out. 

 

She said these tests take a couple of weeks and will be discussed at the oncology MDT held weekly, but as its good Friday Bank Holiday, mine will be delayed for another week. 

 

I'm feeling pretty emotional. It's been 8 weeks since my LLETZ. I really feel like I've been on the forum so long that everyone else who had their LLETZ around the same time as me has been and gone with all clear results and now oncology has been mentioned. 

 

Has anyone else experienced their biopsies being sent for further analysis? What were your results? 

 

And who knew human flesh could be kept in a good enough condition for so long!

 

Sending all of you who are going through this so much love. I'm so grateful for this forum xx

Wish I'd had, access to this document from the beginning. Really helpful to know what should happen and when. Although it looks like 100% of women should receive full results from LLETZ within 8 weeks, 90% within 4 weeks... And here I am being told I'll find out in 10 :/ fingers crossed they let me know then.

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.bsccp.org.uk/assets/file/uploads/resources/NHSCSP_20_Colposcopy_and_Programme_Management_(3rd_Edition)_(2).pdf&ved=2ahUKEwiu5Yaku9vvAhXMilwKHWK2DGQ4ChAWMAJ6BAgJEAI&usg=AOvVaw2aKsArCsn0UymK_fR2nYQj