Is there a hysterectomy support thread?

[ALemonyPea]

I had a laparoscopic vaginal hysterectomy, retained ovaries but everything else removed.

Day 6 for me, and I have some questions and would like some support as freacking out about the thought of vault prolapse.

I am managing pain wise now. Some slight pulling on one side, but manageable. Belly button keeps bleeding, but not enough to run out, so just cleaning it twice a day.

I feel quite heavy down there, is that normal?

I thought I had read everything there was about hysterectomies before I had the op, but the surgeon mentioned vaginal vault prolapse just before the surgery and explained it briefly. I then googled, and the first page brought up an awful image and I can't get it out my mind. I'm terrified that it'll happen to me.

Can anyone offer any help and support.

I don't think the bowel prep is standard - in my case, my bowel was stuck to my womb and one ovary by endometriosis so there was a risk of damage - my consultant wanted to minimise the chances of my needing a colostomy by emptying the bowel completely.

You would be told in advance if you needed to do one, as you have to eat a low-fibre/low staining diet for 48 hours before the prep, then fast for the day before the op while -sitting on the loo for hours losing your guts- taking the prep.

Thanks everyone. Robots so glad your paperwork came through at least thats one less thing to worry about. But I know what you mean that this feels real now. I am really focused on being organised and trying not to get anxious. At least I have had surgery before.
I have a 7am turn up time too. Sounds like everyone has a slightly varied pre-op experience so will just go with the flow.
I have had to take the dreaded bowel prep on a few occasions. It is spectacularly effective isnt it. But EVERY time I am convinced it isnt working as I have quite a slow transit. Then ..... 🙀
Hope everyone has a good recovery/preparation day today!

I had a 7am time and went down for surgery at 5pm. Just a warning! I was allowed to drink from about 9.30 am till 11am. But I had kind of expected to turn up and get dressed into a hospital gown but that's not how it went.

My pre-op also took 30 mins. They're super extra thorough about your health so if you have a relatively good history you should be ok and be quick. Height, weight, BP, urine and bloods. They check that your neck isn't stiff for the anaesthetist helping you breathe etc.

I had a posterior repair but didn't need any bowel prep.

Faux, that must have seemed like such a long wait for you! Shame they can't give you a pager and let you go for a walk!

I can drink clear fluids til 5am, which is a huge relief. I have procedures under deep sedation quite regularly and I get obsessive about drinking all through the night.

I do hope all those recovering are feeling relatively ok today. It's lovely and sunny here, I hope it is where you are too.

I got leaflets at my pre op with when I read a few days before the op, said I'd be given an enema to do at home, and phoned the ward in panic as hadn't received anything. They said that the leaflet was an old one, and wasn't the case now. Also, didn't need to do a full shave as stated in the leaflet.

Robots, I had to be there at 07:30, but wasn't taken to the theatre until 14:00, so not necessarily morning surgery. I was 5th on the list. It was a loooooooong and nervous wait.

I've had a letter from the hospital calling me in for another appointment to see my consultant (I didn't see him in February I saw a female consultant who took my missing coil out in Feb 2014)

This consultant is the one who suggested the endometrial ablation last year and will do the hysterectomy. The appointment is in another county about 12 miles away!

I'm totally confused and rather angry. I'm hoping my 18 week countdown doesn't start on the 20th April - that would give me a maximum of 28 weeks waiting up to the end of August.

I could cry. I will have taken thousands of Northisterone by then.

BG can you call your consultant's secretary again tomorrow just to check? She did say that you're on the list already, didn't she? I suspect you'll be fine, but I wouldn't be able to wait 3 weeks to find out if I were you. If they say the clock doesn't start until then I would kick up a bit of stink with PALS in your position - they've kept you waiting a long time already, and having given you an ablation (which is known not to work with fibroids) already it's more than a bit shit.

Sweary I plan to ring tomorrow. I didn't get in from work in time to ring today.

I don't want to be off work in September at the start of the new term, I teach 5-6 yr olds so I need to be there at the start. We also have a new headteacher starting in September. I want my operation done and dusted by then.

Hello all, glad to see that all are continuing to recover well.
BG2015, that really is rotten!! I have my fingers crossed for you.
I have my pre op on the 6th, quite nervous as I am quite fat and am worried that they may say that I am too big for the op. Not that they have mentioned anything previously to indicate that my weight will be a problem.
I have a week's holiday on the 8th and surgery booked for the 22nd April so it's looming rapidly!!!!

BG :( I really hope that your consultants secretary can help today. That is really confusing. I appreciate that if you teach, then it can be very frustrating trying to get hold of a secretary at a time that you aren't in the classroom.

I aren't even on a fuc**ng waiting list!

I am absolutely livid! The appointment in April is the start of the pathway, the female consultant who I saw 7 weeks ago was just advising me apparantly. The fact that we had conversations about waiting times and the fact that she to,d me that Mr R (who will be doing the hysterectomy) may want to see me beforehand but she very much doubted it, gave me no indication she was advising me.

In addition I have ripung that consultants office THREE times to ask where I was on the list and not once did they tell me that I ARENT on the list.

I am so angry. I'm complaining as this is just not right. I cried at work, I feel so upset

BG that's atrocious! Definitely complain. I wonder whether it might be worthwhile saying to the consultant when you see him that you could take a short notice cancellation, or would that not be feasible with work? I am now crossing everything that the original statement of "he likes to get people in within 6 weeks" will come true so it'll end up being 6 weeks from 20th April.

Thr 18 week pathway will include patients who need further investigations and tests etc so if he approves you for surgery in April his waiting list for surgery might only be 2 months.

For example I was on an 18 week pathway, once it was clear due to investigations I would miss this they gave up considering any kind of pathway so things dragged on for ages - tests and consultations etx. But once surgery was agreed I had a 7 week wait.

Hi BG, I know you from anther thread. I'm so sorry to hear of your woes. You should definitely complain as you cannot go on like this. To be necking norethisterone to this extent and to have been effectively fobbed off is appalling.

You must feel rotten

To everyone else, hi! I expect to I will be joining you soon. Am lurking at the moment but wanted to delurk to show BG some support.

Sweary I too am hoping the 'he likes to do the operation in 6 weeks' statement may also work in my favour.

I just don't know why his secretary didn't tell me I wasn't on the list when I rang her last Wednesday. I'm wondering whether this is a way to fudge the waiting times.

I need to go back to my GP to check that I can carry on taking Northisterone for the foreseeable future.

I shall be crying when I see the consultant believe me. It's just rubbish. I've rung PALs and left my number as they must have gone home for the day.

Thanks for your kind words everyone. I'm out tonight with friends for cocktails- hoping that cheers me up!

I think that you can take norethisterone long term - certainly when my first date for a hysteroscopy was set (20th March, we signed paperwork on 16/12 and still haven't had a date through - they don't know I've gone private) my GP prescribed me a fucktonne of the stuff and said take it until the op, have a few extra weeks worth just in case it's cancelled. Best to check with your own GP though.

Enjoy your cocktails tonight!

BG That's appalling - how can you not even be on the list after all this time?! I hope you get somewhere with PALs. Does your MP have a good record of taking up constituents' issues - could it be worth contacting him/her? An MP's letter can sometimes get things moving when all else fails.

Enjoy your cocktails - you deserve a great night out .

MyBeloved Hi and welcome to the thread .

BG2015, that is terrible! I don't know what to say! I would ring his secretary as well as Pals and see what she makes of it.

BG, that is truly shit. Either someone has cocked up, or they are trying to fudge waiting lists.

I hope you can enjoy this evening. This weekend, I'd compose a formal complaint and send it to PALS, copying in your gp. I would also email the consultants secretary of you can get her email address, saying that you have raised a formal complaint with PALS.

I'd then follow up the PALS email with a phone call. If you don't get a satisfactory response, then 3 days or so later I'd follow up with an email to your mp. I'd make an appointment with your gp to ask how to manage things in the mean time.

If you like, I'm happy to look at your complaint by pm to help hone it.

Oh BG, that is just awful, and very wrong. Secretary should have at least looked for you. So angry for you.

6 weeks for me today! It's flown. I have tried to do some more Walking than normal this week, wish I hadn't as suffering tonight. My legs are aching as is my back. Amazing how quickly you get out of shape by doing nothing for 5 weeks.

I'm still struggling with constipation. Fed up with it all. Doctor prescribed dioctyl, and they've not done much. I've bought fibogel, hoping that helps.

On a good note, I've been able to wear jeans as my stomach isn't as swollen or tender. Hurrah!

6 weeks! Congrats on being able to wear your jeans again, Lemony.

Lemony' I've been taking one sachet of fibogel (fibo-hell more like, drinks shouldn't be chewy) since I finished the prescribed movicol and it's been very handy at keeping things moving. I also invested in a squatty potty which has been a godsend (they're cheaper on amazon). Maybe one of those will beneficial? I certainly notice the difference without it - sorry TMI as usual. Well done on being back in your jeans though! I darent try mine on as my arse is growing hugely due to the inactivity and the eating everything in sight!

I've been using a shoe box as a free squatty potty

Faux I started with a reebok step but then bought the one that you don't have to stub your toe on everytime you go for a wee! I am a total convert. DH won't use it just in case he becomes dependent on it.

Don't think I'm at the squatty potty stage, but I do have a step I can use, so will try that next time. It's so depressing, Pre op, I went once a day, now I'm lucky if I go every three.

Had sex this morning, and I bled slightly afterwards, although no pain. Now too scared to do if again for a very long time. Not good is it? Should I wait another week or two?