I had a total hysterectomy the day before yesterday AMA

[FrankenCat]

I'm home and sore, but willing to answer questions honestly.

hope you're resting! Was yours abdominal or laparoscopic?

Is it okay to ask your age range - only as I'm 30-35 range and have a appointment with my consultant soon!
Also what were your reasons for having one?

Are you in much pain?

Was yours abdominal or laparoscopic?
It was laparoscopic. I have 4 little cuts with three stitches in each cut on my tummy. I was half expecting to wake up with an abdominal cut because my uterus was bulky but they managed to get it laparoscopically.

Is it okay to ask your age range - only as I'm 30-35 range and have a appointment with my consultant soon!
Also what were your reasons for having one?
I turned 38 in August. I know they don't like giving hysterectomies unless it's a last resort thing. I've had problems since I was 15, but really bad for the last 10 years and daily pain that left me doubled over some days. I have endometriosis and adenomyosis. Last year they did laparoscopic excision of the endometriosis and ablation and sterilisation, but noticed that my uterus is bulky and that I had adenomyosis too. The only cure for adenomyosis is hysterectomy.

In the past, I've had history of CIN3 abnormal cells in my cervix (2008), found by routine smears and treated. So that's always been a worry of mine every time I get called for a smear.

There's also been significant history of ovarian cancer in my family.

So whilst they were going to give me a hysterectomy anyway, I asked them to remove my ovaries and cervix at the same time given mine and my family's history.

Are you in much pain?
Yes and no. I'm only day 4 after having it done. I came home from hospital the day after surgery. I've got great support at home so I'm able to rest as I should be. It's painful to cough and move. But I'm able to walk around gently.
I'm taking cocodamol for the pain but only taking 2 in the morning when I wake up and 2 about 6pm when I'm knackered and ready to sleep for the night.
It's sore, but expected kind of sore if that makes any sense. I thought it would be a lot worse than it is. So whilst I'm in pain on moving (mainly from lying down to sitting up) it's manageable pain.

The worst was getting out of bed after they took my catheter out on Friday morning. But it's got so much better in just a few days.

Hi hope you are ok and recover quickly! How long were you told to wait to go back to work or exercise?

Your story is very similar to mine, had the whole kit and caboodle out due to adeno, found after ablation and opted for ovaries out due to family history of ovarian cancer, plus the CIN3 too! I was a few years older though, 43 at the time of my op.

Hope you are recovering well and have got HRT sorted, I had to wait ages for a GP appointment to see about it and she was a bit snotty "you should have started HRT straight after the op" Well, no-one told me!

It is far and away the best thing I ever did, once you're healed, you will feel like you have got your life back, it's honestly great. Sex can be a bit scary to start, had some cuff pain for quite a few months but that too is now better than ever:)
Wishing you a fast and easy recovery

How long were you told to wait to go back to work or exercise?
They said 6-8 weeks back to work for a sit down type of job. 12 weeks for a more manual job. I'm a carer and even using the equipment it's still very manual (turning an overweight person in bed for example puts a huge strain on your tummy). So I'm taking the full 12 weeks off as I'm not risking damaging anything.

Sorry, I only answered half of that. I think it's 6-8 weeks for exercise too, but they stressed the importance of listening to my body and not overdoing anything.

@Wherearemyminions thank you. I'm hoping I'm the same as you, it fills me with lots of positivity hearing everyone's success stories and I'm so glad it's worked well for you. Thank you once again.

Yes I have endo and Aden pcos and they have just found fibroids but I'm early 30s so worried the answer will be no!
The other worry is the time off after! My work don't pay sick pay and like you I'm a hca in the community!

Hope you feel much better soon!

Frankencat, your post is very timely I’m booked in for a radical hysterectomy at the end of the month for endo and adenomyosis!! Have you started straight into hrt? Did they do ful excision of your endo at the same time?

@hardyloveit my work doesn't pay sick pay either, I'll only get SSP which is I think about £94 a week. I've asked for my holiday pay to be paid for 1 week out of each 4 weeks that I'm off, I've got 3 weeks holiday pay left so that will top my SSP up a little bit.
Have you had children already? I think that makes a difference when it comes to their decision. Have you already had some surgeries then?
If you are adamant that a hysterectomy is what you want then you need to be insistent with them and tell them it's absolutely what you want. Keep pushing for it because they're very reluctant to do the surgery. I was lucky, after I'd had the ablation last year that didn't work I'd said how I'd just had enough of being pushed from pillar to post and they offered me the hysterectomy and that's when I said that if they were taking it out, I wanted the ovaries and cervix out too. And she listened to me.
Good luck xx

@Hellbentwellwent
Have you started straight into hrt? Did they do ful excision of your endo at the same time?
Yes I started HRT patches Friday, the day after surgery. They gave me Evorel 50 patches which need to be changed twice a week. I have a months supply from the hospital but as you've probably already read elsewhere there's a huge shortage of HRT throughout the UK. My GP surgery phoned me this afternoon to say that there's no Evorel 50 in any of the community pharmacies, so already I've hit a problem and they'll have to put me on something different when o run out of these, but I'm not overly concerned, there's not a lot anyone can do really and I'm sure they'll sort me out the best next option.
Yes, they also did excision of all the remaining endo at the same time. My surgery was supposed to take just over 2 hours and it took 4 because in her words it was "fiddly". I'm assuming that was because of the endo but I was still out of it when they explained it to me.
I know it's very early days, but I swear I can already feel some benefits. I used to struggle with having a poo but I've gone every day since Friday. And I know I've still got pain in my tummy from the operation itself, but my back pain has already gone.
I'm honestly looking forward to being one of those women who say that they're a new woman since having it done. I can only hope anyway!
Good luck on having your op done! Xx

Ffrankencat, that’s brilliant that your already feeling a reduction in your endo pain. The hrt thing is terrifying with the shortages but my consultant will be putting me straight into the gel which I don’t think is currently suffering the same shortages although who knows if that’s to come.

Have they put you on progesterone as well? I believe it’s necessary for endo patients to oppose the estrogen is effect on any remaining endo and to keep it regrowth in check. Has that been mentioned to you?

Glad you’re feeling better than expected, hopefully you’ll be up on your feet and feeling fabulous soon xx

@FrankenCat yes I've got two children. Had around 7-8 surgeries in the last 14 years because of it. Now I have fibroids on top! dh doesn't want anymore children and I don't want to have to carry on every month struggling with the heaviness and pain.
It's amazing you have seen the benefits already! Hope you get the medication sorted too! Very worrying

All sounds reassuring! I have preop in November and the actual op cant come soon enough! They are removing my uterus and cervix and deciding on the ovaries whilst in there so to speak!

how are u keeping urself sane

I had a laparoscopic hysterectomy in 2011, PM me if you want to know anything during your recovery.

Glad to hear you're healing so well. I'm six weeks in but kept my ovaries. Feeling really good pain wise, just really tired. Like you taking a full three months off as my work is nuts busy and while largely desk based there's a lot of walking long distances, carrying lots of stuff most days so not taking any chances. Amazing to not have any pain!

Hi op Im suffering from from both Endo and adenomyosis too as well as several fibroids. Have been pushing for hysterectomy for a while now but they weren't Keen due to my age (36) but I have 3 children and my husband has had a vasectomy so we are are done. Have been given dectapetil(sp?) injection and hrt for six months and am now on cerazette pill. But I'm in constant pain and I'm sick of it.

Saw my gynae last week and they said if I continue to lose weight with slimming world and reduce my bmi they will see me in six months and put me forward for partial hysterectomy. She said they definitely wouldn't do a full one due to my age .So I'm very conflicted as the partial will sort my adenomyosis but not my Endo . I'm also really worried about after pain and recovery so thank you for posting ❤️

@Hellbentwellwent
Have they put you on progesterone as well?
No I've just looked at the patches and they're estrogen only patches, I didn't realise about the progesterone although that makes complete sense about it counteracting the estrogen for the endo. I'll need an appointment with the GP in the coming weeks anyway so I'll ask about that at the same time, thank you for mentioning that as I don't think I would've even thought about it.

@hardyloveit
Keep pushing for what you need, I found that unless I was taking control and telling them what I needed, they pretty much fobbed me off every single time.

@Frustratedandworried
That's exactly how I felt too, couldn't wait to have it all out from there after years of suffering daily. I was ridiculously nervous in the days and hours leading up to my op though, to the point that I was questioning myself as to if it was still the right thing to be doing. But I am only 5 days post op and already I'm on less painkillers now than I was before. Yeah it hurts a lot when I'm moving about but when I'm sat still I'm in less pain than I was before the op. I already know that I made the right decision.