Priority 2 Hysterectomy

I’ve been getting colposcopys for 12 months but they have been unsuccessful, total abdominal hysterectomy planned, advised 4 weeks as I was urgent priority 2, but booking clerk is saying 6 months wait, I’m beginning to lose my sanity, has anyone else had this hurdle?

Hi Robin0987

I hope you are okay, although from reading your post, things seem to be quite stressful lately. I too have been told that my only option now is to have a total abdominal Hysterectomy and was told to expect it to be by the end of Aug early Sept, I spoke to a lady who told me the wait will be much longer but consultant is still saying end of Aug. Its stressful not knowing when it will be. I do hope that you are able to get some kind of idea soon of when they will be able to do the operation for you.
sending you a hug
take care of yourself

Lilo x

I’m sorry to here that we’re in the same boat, sounds like your in priority 2 aswell, nhs guidelines are for treatment within 4 weeks, which may be why your consultant is say late Aug, the problem is at booking the procedure, I think its a backlog but that doesn’t really help us, spoken to them but the response was still the same, quite rudely, ’ wait your turn’
This is absolutley the worst time to need the NHS,
I’m uncomfortable making a fuss but will ring in a few weeks if not recieved a date, hope you do get your surgery when the consultant says, please keep in touch and best of luck x

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Hi @Robin0987

Sorry for delayed reply, I hope you are doing okay.

You are so right, it’s not helpful when they are rude, and you shouldn’t be made to feel uncomfortable for enquiring about something that will be happening to you :pensive: a little bit on compassion and kindness costs absolutely nothing. I hope that you hear something soon.
I’m still yet to hear anything about my procedure, but hopefully will hear something soon, feel free to message anytime.

Take care lovely

X

I am waiting to hear the results of my 3rd lletz after last two haven’t provided clear results. I’ve been told I am likely to be looking at a hysterectomy too if the results come back as uncleared. It’s been going on for a year and a half and I’m at my wits end with the appointments and the waiting. I just wa to to know now what’s happening so I can work out when I can get on with life!

Hi EmmaC

It’s awful the not knowing, and the waiting for results. I do hope that your results come soon so that it can help you relax a little.
How do you feel about the prospect of a hysterectomy? I can sympathize where your coming from, it’s a lot of waiting and not knowing when things are going to happen and what procedures they will need to do.

Sending virtual hugs your way.

All the best

Lilo x

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Hi Lilo
I just got news that I had low grade and not high as my test of cure smear showed. I am beyond relieved. I do know that it stands a chance of changing again in the coming months or years and I think I am better prepared if I need a hysterectomy now in the future

X

That’s great news, I’m so pleased for you, I understsnd your feelings off wanting to get on with your life, it’s hard to make plans when you’ve no idea when your going to be incapasitated especially since it had such a long recovery, I’m relieved you don’t have to go through the anxiety any longer
Best wishes x x x

Thank you Robin. I will book mark this chat thread as I may be back in the future. Good luck with your operation and thank you for your kind words. It means a lot albeit from strangers on the internet :kissing_heart:

Hi @EmmaC
I’m so pleased that your results are low grade. Sending you a big virtual hug, Will you be yearly check ups?
Honestly I’m so pleased that you can put your mind at ease a little.

Take care

Lilo xx

Hi lilo, how are you getting on with your surgery, hope you’ve had a date and are in prep mode, as scary as it is, at least you can move forward with your life once your recovery is over
Best wishes x x

Hi Robin,

I wish I was, I have heard absolutely nothing :pensive: like yourself I don’t like to make a fuss but the not knowing if it will be in the next few weeks or whether it’ll be months to next year is getting me down. I was advised by the consultant to Inform my employer of the plans, and I now have them on my back due to needing to cover me potentially in September (I work in a school) which is understandable but right now I’m none the wiser.
Have you heard anything for yourself?

Take care

Lilo x

I do sympathise, my employer is also asking for dates but am in no better position then yourself, was told I would recieve a call last week , no call then again this week, no call, very easy to become quite dispondant with people,
:crossed_fingers:For us both, will keep in touch if I hear anything, x

Hi @Robin0987

Sorry for the delayed response, I hadn’t realised you had replied.
That’s awful that theyve said they will call and yet still nothing. Understandably they are busy right now, it seems there is many women waiting for treatment, but to say you will get a call and not can most certainly make you feel despondent.
I will be keeping my :crossed_fingers:also for us both. Take care lovely. Hopefully you’ll get a call this coming week, if you haven’t heard anything yet Xx

Hey lilo, quick update my ‘nagging’ finally got me a call back, consultant agreed I can’t wait and I will need another lletz in a few weeks while waiting for the hysterectomy, ( probably end of year)
I’m disappointed because it means another general Anesthetic for me, but as you rightly said, they are so backed up with ladies waiting from covid delays.
Its 18 weeks since my last treatment failed, and another few weeks wait, :disappointed: but had I not been calling and asking questions, even that wouldn’t have happened.
Have you had any indication when you’ll get your surgery?
Its scary to think that really it feels no one is in charge of my medical care, I do hope you’ve had better luck x x x

Hi Robin,

I’m pleased that something is happening for you, although it’s not ideal bless you, I completely understand what you mean in respect of feeling like no one is in charge of your care, it seems to be ladies having to chase things up a lot of the time otherwise it seems you get put on the back burner.
I do hope all goes well with your next treatment. Unfortunately I haven’t been given any dates as yet but was told that I’m on the urgent waiting list although doesn’t feel that way right now so should hear as soon as the back log is cleared, it’s so hard to make plans ahead incase I suddenly get that call to say right it’ll be this day, just feel very deflated at the moment.
Hope you are okay

Best wishes Lilo xxxx

I am currently waiting for a date to come through for an abdominal hysterectomy after 2 Lletz procedures. I was offered 3 options another Lletz (basically pointless as I have barely any cervix left - over half has gone ) wait 6 months and have a smear and see if it has cleared itself naturally or hysterectomy. I have CIN3 and high risk HPV. My second Lletz was in April and then had to wait for the monthly MDT meeting (typically missed the may one so had to wait till June). I then had an appointment to discuss options and sign the consent for the hysterectomy. I asked when it was likely to be done and she said it needs to be done before the 6 months for the smear so it would be end of September beginning of October. I still haven’t heard anything. I work in a school office so have obvs spoken to the head and we have supply in but we are paying for that whilst I am still there and no whiff of a date! Whoops

Hello Clairektng I hope you get your date fast the waiting and not knowing is probably very stressful as I am sure planning around the dates is important.
Please if you don’t mind me asking why are they offering you abdominal Hysterectomy for CIN? Instead of Laparoscopic hysterectomy. I had CIN3 and no clear margins and was offered hysterectomy Laparoscopic if any of my following checks came out with abnormalities, so far so good and didn’t find any, but I don’t understand why they will offer abdominal when is only CIN . Please any ideas of why the difference treatment options. Thanks and good luck

Hi … I have no idea. I think The doctor said abdominal is better for removing the cervix but I may have misunderstood as I was taking it all in. Xx

I am also CIN3 with no clear margins …. I have said they can take my ovaries as well so don’t know if that makes a difference x