Hysterectomy fears

[shootinstar04]

Hello everyone,

So the time has finally come, my turn on the for a hysterectomy has arrived.
I was told there would be at least 6-8 months wait. It's been 2 months and I'm booked in for the end of June.
I'm feel incredibly anxious, scared, worried, feel sick. The only time ive ever been to hospital was to have my two children.

I probably should have said from the start I have just turned 40 I have a 10cm fibroid and clusters of them and an abnormal smear test result which they cannot do a biopsy as they can't get to my cervix, periods so bad I'm anaemic. So that's the reason for the hysterectomy.
Any words of comfort, any tips, what should I take with me too hospital, any tips for the healing process would be most welcome. Although I may get told some of this at my pre op.
Please no scare stories I'm not sure I could cope with those at this moment in time.
Many thanks

[MissyB1]

So I’m two weeks post op now from my hysterectomy. I’m doing just fine. I had it done keyhole, I expect you will too? Yes the first week is hard I won’t deny, but that will soon pass and you will start to feel better.

Tips:
Buy rennie deflatine in advance for the bloating / wind.
Buy Dulcoease to prevent constipation (this is important).
Take magazines or book into hospital.
Phone charger
Arrange for housework to be done for you the first 4-6 weeks.
Remember to ask the hospital for a sick note for work if you need one.
I couldn’t eat full meals for the first few days so have easy nice things like bagels, cereal, croissants, fruit, eggs in the house.
You won’t be able to drive for a few weeks so think ahead about that, you may need to plan for things that require a car.

Don’t worry! I’m a complete wuss and I’m ok!

[starrynight21]

I had one at 35, also for multiple fibroids. Best thing I ever did for myself. I had mine vaginally , and it was very straightforward to get back to normal life because I didn't have an abdominal wound at all. I'd guess that you would either have it that way, or by keyhole which is almost as good since you only have tiny wounds.

Tips - PP has nailed it, very good advice.

Don't worry - you'll be fine ! And you'll be so glad you had it done !

[Arbadacarba]

I had mine 5 years ago at a similar age to you. It was one of the best decisions I ever made. It transformed my life from having perhaps 5 pain free days a month and horrendous periods to, once I had recovered, total freedom.

I had an abdominal hysterectomy & oophorectomy - is yours to be abdominal? Other types are supposed to be easier to recover from, but my recovery was fine. The first 48 hours were the worst, but you are normally still in hospital then so they can give you strong painkillers. I was on my feet about 36 hours after the op for 1st wee and shower; home on day 2 and then it was about a week of gradually pottering around at home before I left the house for the first time. Some people take longer, some are quicker - everyone's recovery is different.

What to take with you - sanitary towels if you don't want hospital issue. Loose clothing to put on post-op, and take a nightie or sleep t-shirt not pyjamas. Straws to help you drink without having to move about too much. A pillow for the drive home - you can hold it to your abdomen to stop you feeling road bumps too much. Hand wipes, cleanser etc. to use until you are ready for your first shower. & obviously the usual entertainment things.

If you have long hair, plait it or put it up to stop it getting tangled while you're under anaesthetic then you won't have the hassle of detangling it while you're still sore.

Healing process - just be guided by your body. The overwhelming tiredness is like nothing else, so sleep when you need to. Potter about when you can. Don't lift anything heavier than a kettle. Make sure you have some easily-prepared food available - either cook and freeze beforehand or get some ready meals in.

If you work, ask for a phased return once you're ready to go back. You should expect to be off for at least 6 weeks, but take as long as you need - I had about 8 weeks, but I know some people who've needed 3 months or so.

There is really nothing to worry about and it's an operation that changes women's lives very much for the better.

[kindlyensure]

I had an abdominal.

Omg, having a hysterectomy was the best thing I've ever done, honestly.

Even though it was really painful for the first night (sorry, just preparing for worse case) and I was mainlining morphine, and recovery was tender and cautious, every day was one step closer to feeling better - no more lugging about my bowling ball fibroid which caused bladder issues and lethargy and blood blood blood blood. Ugh.... I was so happy to get rid of me offending uterus (even though I kind of felt a bit nostalgic coz it did give me three kids).

My ONE regret - and this might not apply to you but I'll tell you anyway - I had the option of getting rid of ovaries and cervix at the same time, even though they were not the issue BUT because I was your kind of age, I didn't want to deal with menopause and hysterectomy at the same time. It just seemed too overwhelming. But honestly, a few years later, I do wish I'd drawn a line and had everything out while they were in there. (Not because I've had probs but yay, no more smears, or potential for anything to go wrong with ovaries etc)

There is a lot of indigestion/discomfort after so take any drugs offered, but also natural remedies like peppermint tea I found helpful (and soothing).

I didn't have any bleeding so I didn't need all the mega towels I took but I guess everyone is different.

And rest rest rest!

Good luck! Think of it as having an op which is going to make your life significantly better.

[Blackopal]

I am four months on from my hysterectomy, i am so thankful it is done. I was in the exact situation you describe, i know how awful the bleeding is that you end up having blood transfusions for the loss.

I remember being so nervous, but honestly its really worth it. As far as recovery goes i was in bearable pain for a few days, but off pain meds by a week. I am a single mom so apart from the first week i was back doing all house work and school runs. (I am def not advocating this, rest as much as you possibly can).

The only thing that took me by surprise was the fatigue, that lasted for around three months i think (again rest as much as possible).

My biopsy was attempted twice but failed but following the op i was clear. Hoenstly OP, you have to go through a scary day but it is so much better on the other side.

[7pastapackets]

I agree that having a hysterectomy is the best thing ever!

I can understand your fears but focus on what it will achieve for you. You will be spared a lot of the hideous aspects of the menopause later on (if you are keeping your ovaries now) and not have your life ruled by awful periods, leaks and sanitary towels any more.

I had keyhole and it was really straighforward but abdominal surgery will mean longer recovery. The main aspect afterwards for me was the fatigue, which went on maybe 4 weeks, I was falling asleep everywhere which I never do usually. So accept all help and go easy on yourself.

Once that time was over, I felt really invigorated, like a new person.

You will probably have a catheter put in during surgery, which comes out the next day - drink loads of water so that you avoid a UTI afterwards as these are really common. If you are prone to UTIs they might be happy to give you preventative antibiotics.

Good luck!

[Arbadacarba]

I've just remembered something else - your first poo after the operation can be difficult, especially if you're on codeine, so make sure you have a gentle laxative at home in case you need it.

[shootinstar04]

Wow thank you all so much for your stories and all the tips.
In my letter it says I'll be having open surgery, taking my cervix but keeping my ovaries because of my age.
It's lovely to hear that you are all doing well and it's the best thing you have done. So I'll be taking all of that with me and focusing on that.
Are a small amount of visitors allowed to come see you whilst in hospital?

[MissyB1]

My dh came to see me, our hospital is only allowing one visitor. Tbh you won’t want anymore.

[shootinstar04]

@MissyB1 thank you comforting to know. I'll make a note to ask them at my pre op next week.

[shootinstar04]

@Arbadacarba also good to know thank you, however it's difficult pooing atm as my fibroid is pushing on that area but I'll have some in for when I'm home

[TheTurn0fTheScrew]

I had a laparoscopic hysterectomy on 11/03 this year, and was back at work in a physically and mentally demanding job on 20/04. I am glad I had it done, as I have not been in pain since then (stage 4 endo).

When I woke up I was surprised at how manageable the pain was. Catheter was already out when I came round. I don't think I took painkillers after 48 hrs, and even then just ibuprofen. I was home the following day. I do have some hormone issues that need sorting as I think my remaining ovary is failing, but this will be sorted in time.

It does make you tired, so lots of rest. And I was very bloated for a good 8-10 weeks afterwards, so needed new trousers, but that might just be me?

[mineofuselessinformation]

There are already lots of good tips here.
I'd add to factor in doing pretty much nothing at all besides recovering for the first two weeks at least.
I live alone so arranged for someone to clean and help with washing (lifting wet washing and hanging it up - that really pulls on your abdomen, so don't do it!), and other general cleaning.
I also had shopping deliveries and asked that they bring them in and put the items on my kitchen counter so I wasn't bending down and lifting too much.
Ask your insurance company on how long you shouldn't drive for - it varies. Some just say 'when you feel safe to do an emergency stop'. Mine did, so I tried it out in my car, stationary on my drive.
Practise saying 'I can't' instead of 'I'll try' - you need to look after yourself to help your recovery.
I had a few bumps in my recovery but don't regret having a hysterectomy for a second.

[HazeyJaneII]

I'm on a waiting list for a hysterectomy after an emergency admission for heavy bleeding a couple of weeks ago - will be watching for tips, and wishing you well @shootinstar04

[AdditionalCharacter]

I had a hysterectomy in 2017. My advice would be to stick to the advice you get from the physio after your operation. Don't push yourself and accept as much help as offered. Comfortable clothing for the first 4 weeks, nothing that'll push on your stomach.

Good luck. Having a hysterectomy was the best choice I made.

[shootinstar04]

@mineofuselessinformation thank you, all of you have certainly made it very clear to rest rest rest. Something I'm not very good at, but I will make sure I do, I will be needed back at work ASAP. I'm a childminder so am depended on.
@HazeyJaneII wishing you get booked on very soon. I was told it's about 6-8 months wait and 2months I'm booked on. Good luck to you also

[MancyNitford]

My hysterectomy was just over a year ago. Mine was a medical necessity because I had endometrial cancer, but a life free from flooding clots for two weeks each month has been liberating. Surgical menopause isn't so great, but if you're keeping your ovaries then you probably won't need to worry about that for the moment. I was only in hospital for one night, and although once I got home I was a bit sore and tender, I was able to go for short walks after a few days.

Take it really easy, listen to your body - it will soon tell you when you've done too much. Wear comfy elasticated waists for a few weeks. You may well get the infamous post-hysterectomy 'swelly belly' for a bit. Drink lots of water and eat lots of fibre after the op. The first time you poo after the op, you will be so proud of yourself!

The Hysterectomy Sisters group over on Facebook is a great source of support, advice and info. The ladies there helped me through my darkest days, both before my op and after when I was waiting for my results.

[Arbadacarba]

In my letter it says I'll be having open surgery

That sounds like an abdominal, as I had. The incision is normally made along the bikini line (mine looks similar to the incisions women have for Caesarians). You'll need to keep it dry for around a month, with a dressing on, but I found it easy to shower around it and they'll give you replacement dressings. Five years down the line, the scar is barely visible. I had dissolving stitches in mine.

Where your cervix was, you'll have a 'cuff' - just feels like a tiny lump where it used to be (if you were able to feel your cervix beforehand, I know some people have high cervixes and can't). You'll be given advice on pelvic floor exercises and usually at least one physio session post-op. And, yay, no more smear tests - though I had to tell them three times to stop writing to me to tell me mine was overdue.

One piece of advice - there are a lot of US-based anti-hysterectomy sites on the internet - avoid these because they are full of baseless scaremongering. UK-based sites are more realistic and supportive.

I had fibroids, adenomyosis and endometriosis, and after the first 48 hours I can honestly say the residual pain from the op was far less than the pain I'd been enduring from my conditions; and in the first 48 hours I was still in hospital so had morphine etc.

[Maxsaidno]

OP I can’t offer any insight but just to say I’m with you on this journey. Surgery booked for 24th, just a couple of days before my 40th.
Tearful even thinking about it so beyond practical prep I’m mostly burying my head until the time comes 😬

[Maxsaidno]

Sorry I should’ve said feel tearful thinking about it. I’m not actually sobbing constantly at the thought. Just the usual pre surgery nerves and fear of the unknown.

[shootinstar04]

Awwww @Maxsaidno Wishing everything goes well on the 24th for you. I hope you have read the posts from all the lovely ladies, you may find some comfort

[Arbadacarba]

It probably won't help to say so, @Maxsaidno but please don't worry. A hysterectomy is the start of a new, better, pain-free life. And I can't overstate how marvellous it is no longer to have your life ruled by periods.

After the op, I still found myself thinking in terms of 'will I be on my period' when making plans - and then there was a marvellous sense of release when I remembered that never again would a special or important occasion be overshadowed by my period. A realisation that I no longer had to avoid skirts and dresses in light colours because there was no more danger of flooding and leaking. No more spending £££ on sanpro. No more obsessive hoarding of painkillers because the thought of running out was terrifying.

It really does give you a new life.

[mineofuselessinformation]

Oh! I forgot to say, don't be freaked out when a 'spider' of suture material comes out - it'll be from where they stitched the top of your vagina. I was a bit perplexed by mine until I realised what it was.

[EntropyBanana]

I had mine in June last year. I was really worried beforehand. It went really well and I am so happy I had it.

I took peppermint teabags in in a little tupperware box and asked for a hot water when the tea trolley came round. I found drinking peppermint tea good for the bloating. I had a laparoscopy and very little pain.

I didn't get seen by an NHS physio but I had already arranged with my usual one to check in with her for rehab and that really helped. I obviously stopped my PT sessions for a while but started back in a very rehab style and that helped too. I took it easy and have got stronger and stronger. Today I deadlifted 50kg with ease!

I bought myself a Switch to keep me occupied as I was recovering, that helped.

I wish you the best of luck with yours. You'll soon be looking back on it being in the past and starting your new life.

My biggest post-operative issue is trying to convince my surgery to stop summoning me for smears and then telling me off when I don't book one.

[Arbadacarba]

My biggest post-operative issue is trying to convince my surgery to stop summoning me for smears and then telling me off when I don't book one.

Yes - mine seemed unable to understand that I didn't have a cervix any more. 'So you want to opt out?' etc. and letters warning me of the dire consequences of not having a smear. I had them religiously pre-op even though I often had to reschedule at the last minute due to unpredictable periods.

I was almost tempted to turn up for a smear, to watch the nurse hunt in vain for a cervix that wasn't there; but as it wouldn't have been the nurse's fault that the NHS computers can't join the dots, I refrained from wasting her time.