Yikes! Hysterectomy fear!

[Wishuponastar77]

I’m hoping someone can help ease my fears?! I’ve recently been advised that I need to have an abdominal hysterectomy. It turns out that I’m a host to a massive fibroid in my uterus. It’s huge. I just though I was a bit fat. It appears it’s gone inwards more than outwards. I didn’t have any symptoms until January this year. I went to hospital with unexpected breathing problems and they discovered that I had clots on my lungs. It was only after further scans that I was told that I had a massive fibroid and that the weight of it pressing down in my pelvis had caused the clots. I was referred to gynaecology and they advised me that a hysterectomy is the best way to go. I’m 45 and we have completed our family, but the news still knocked me sideways. I’m absolutely terrified. I’ve never had an operation before, never mind being cut from my navel to my mary! I’m worried about waking up after the operation in pain, stapled up and feeling like a beetle stuck on it’s back! Can anyone share their experience with me, or words of reassurance/advice? How the heck do you put your knickers on afterwards?! How easy is it to get in and out of bed?! Is it as painful as I’m imagining it to be?! Will I be able to get up and out of a chair ok?! I’m in a right old state. Any support, advice or words from fellow hysterectomy-phobes will be greatly appreciated!

Don't panic! Hysterectomy veteran here - mine was over 5 years ago, abdominal hysterectomy and bilateral oophorectomy. I had fibroids, adenomyosis and endometriosis.

I’m worried about waking up after the operation in pain, stapled up and feeling like a beetle stuck on it’s back!

You'll be on painkillers, so the pain should be manageable and you can ask for more pain relief. You should be able to sit up in bed - they'll raise the bed for you if you want. You'll have a catheter in so no need to worry about getting up in a hurry for a wee.

How the heck do you put your knickers on afterwards?!

Big, soft, comfy knickers are fine. You'll need to wear a sanitary towel at first because you'll bleed from the operation - nowhere near as heavy as a period, though.

How easy is it to get in and out of bed?! Is it as painful as I’m imagining it to be?! Will I be able to get up and out of a chair ok?!

Going from lying to sitting to standing is probably the hardest bit. You have to take it very slowly, easing yourself off the bed and trying different angles to get your legs on the ground. It is painful but not unbearable and again, you should be given a supply of good painkillers. Once you are on your feet (or in a chair) it's fine, but the pain on getting up is the last pain to go.

Prepare a recovery nest for yourself at home - everything in easy reach, pillows and so on so you can prop yourself in a comfortable position. If you don't have anyone to cook for you, prep some meals (or buy ready meals) that are just shove-in-the-oven things to tide you over for the first couple of weeks.

You'll find you gradually potter about the house more and more as time goes on, you shouldn't force yourself to do more than you feel comfortable with. The tiredness is worse than the pain after the first few days - it's overwhelming exhaustion as your body heals, so you need to let yourself sleep as much as you need to.

Everyone's recovery is different. It took me 7 weeks to get back to work (desk job) but after the first week it was quite pleasant to lie around doing not very much at all.

The operation was the best decision I ever made. You won't regret it if you're in pain because once you have healed, that's you free of pain forever and also free of periods and the hassle of erratic menopausal menstruation.

Don’t panic!

I had a hysterectomy summer last year and I echo the above poster.

Take the painkillers offered to you and make plans beforehand to ensure you’re well looked after when you come home.

Dont try to do too much too soon.
I was back at work (desk job from home) after 6 weeks which was fine but I could have done with longer really.

Hysterectomy literally changed my life in such a positive way. It wasn’t easy for the first couple of weeks but so so worth it.

I can now cycle, horse ride and go out for more than an hour without rushing to a loo due to bleeding or needing a wee (womb was swollen and squishing my bladder).
I religiously did my physio and pelvic floor exercises both before and after the op which I think helped.

I had an abdominal hysterectomy 15 years ago, recovery wasn’t easy but mostly for me it was because I had very small children.

My scar was hip to hip, not down. Didn’t ask for that but they did it. Have an awesome overhang🤦‍♀️ They left my ovaries, took everything else including cervix and top of vagina.

Recovery for me was slow but mostly that was dealing with my dses and because it was treatment for cervical cancer. I went back to work after 12 weeks and was okay physically after that.

Good luck with your surgery💐

Antarcticant Thank you so much for the advice!

Were you able to put your own knickers on, or did you need help? I know it’s an odd question but it’s really bothering me! I hope I’ll be able to do it myself, albeit slowly! I’ve frightened myself silly by reading too much on the Hystersisters website. I’m not sure if things are done differently in America but some of the stories seem so brutal. One woman was sent straight home home after she woke up after her abdominal surgery! They made her have a wee, get dressed and then escorted her to the front door! Ouch! Does it take long for the stomach muscles to heal again? Don’t get me wrong, I’ve never had a firm stomach, and nor shall I ever, but I do like the pleasure of being able to tie my own shoelaces.

Someonesomewhere it’s good to hear that you didn’t have a traumatic experience. I guess I need to prepare myself for feeling a bit vulnerable for a little while but knowing that things will gradually improve makes it seem worth it. It’s odd because I’m not really suffering at the moment. I have heavy periods but that’s about it. I know that if I leave this squatter to grow much bigger that it’ll cause problems down the road. Thankfully my husband is very attentive and our children are 11 and 13 so they’re old enough to have a degree of independence. They’re still disorganised, messy beggars though, so that will no doubt be a source of future frustration. 🤦‍♀️

I worry that I’m going to wake up from the anaesthetist (which I’ve never had before) in a blind panic and writhing in pain! My imagination is terribly dramatic. I do hope I’m pleasantly surprised.

DontKeepTheFaith My goodness. Cervical cancer? I’m sorry to hear that. What a rollercoaster that must have been. I’m hoping to keep my ovaries ( unless they’re rotten and then they’ll have to go in the bin). I don’t relish the thought of surgical menopause, but I’ll cross that bridge as and when I get to it. I think my cervix is going. I’ve had borderline smeers in the past so it may cause me trouble in the future if I leave it. I just hope that the surgeon sews it up nice and tight at the top. I don’t want my bladder dropping down through any holes caused by missed stitches! 🤢

Its a journey that I wasn’t expecting to find myself on but I really appreciate your comments and reassurance. If you think of anything else that might help me please let me know! Knowing that you ladies have gone through it and have come out the other side is a huge help.

Than you! 💚

Yes, putting knickers on and getting dressed wasn't an issue - just make sure you wear loose clothing and take your time. The movements that are difficult at first are things that put a strain on your muscles - anything weight-bearing.

I worry that I’m going to wake up from the anaesthetist (which I’ve never had before) in a blind panic and writhing in pain!

That won't happen - you'll be full of painkillers when you come round - you'll feel groggy and sleepy rather than panicky.

There is a tendency for horror stories on American sites - that's because there was historically a tendency to carry out hysterectomies on younger women as a first line of treatment. In the UK they are only carried out in cases of genuine need.

You won't be discharged until you feel ready - and if it's anything like my experience you'll be hanging round for hours packed up and desperate to leave while they take ages to get your formal discharge and pharmacy meds!

I had one last January, everything out and cut just above belly button to top of my pubic hair. Be prepared for some painful and excessive wind post surgery! They pump you full of air and it is like nothing I’ve experienced before or since! My scar has taken a year to fade but is fine now. I was in hospital 5 days and only put knickers on to come home, I spent the rest of the time in hospital gowns. You’re fine when you wake up, they give you plenty of pain killers and the worst bit for me was the blood thinning injections afterward. Sitting and standing were weird because you feel you might open up rather than pain, but obviously you don’t! I have low blood pressure so fainted a couple of times when standing up but overall it was fine.
get a couple of t shirt dresses and slip of shoes and you’ll be fine. I was back to work in 7 weeks, more because I was exhausted.
You need a pillow to go between you and the seatbelt for the journey home and a long pillow to prop you up / to sleep on is helpful.
Make sure you talk to someone about you HRT options for afterwards. Good luck.

Antarcticant thank you for the reassurance! I was sobbing to my husband telling him that I couldn’t bear the thought of being so helpless that I wouldn’t be able to get my own pants on. I’m sure I’ll eventually figure out my own technique!

Martinisarebetterdirty Thank you for sharing your experience with me. I can imagine it being weird/uncomfortable standing up for the first time. As for being bloated with gas - that doesn’t sound like much fun. Is everyone tooting in their beds?! It’ll sound like a little brass band on the ward!

Hopefully I’ll get my op date soon. I just want to get it over and done with and to recover through the Summer.

My consultant seems lovely. Very calm and reassuring. All the same it’s still strange/disconcerting knowing that you’re literally putting your life in the hands of a stranger.

I actually found my bra more difficult than my pants. Not an issue if you don't need to wear one around the house for comfort but if you do, a front-fastener will be easier for the first week or so.

Antarcticant I would never have thought of that! Great tip - thank you!

If you exercise, any strength you can build in your arms and upper body before the operation will be helpful. It's not until your stomach muscles are out-of-commission that you realise the extent to which you use them for simple things such as sitting/standing up. You'll need to use your arms a lot to raise yourself so the stronger they are, the less tiring you will find this.

Make sure you have a pillow with you when you are going home - you'll feel all the bumps in the road and holding a pillow to your abdomen on the journey will help. You might also want to use it when going up or downstairs at home.

Regarding the wind - I also had terrible heartburn so your antacid of choice is s good thing to have to hand.

I found, with my wound, the best thing to do was to leave it absolutely alone. You won't be able to immerse it - I left the dressing on and held the shower head in my hand so I could avoid getting it wet. The stitches should disintegrate and come out by themselves when they are ready. Mine healed really well just by being ignored and 5 years on, the scar just looks like a long stretch mark that's faded to silver - you can't really see it unless you are looking for it.

Just add pack a long stretchy nightie instead of pyjamas for when you’re in hospital as much easier if you have a catheter in.

I went to primark and bought a couple of pairs of black ‘loungewear’ trousers which were very stretchy. When I first got home I wanted to change out of my PJ’s each morning but needed something comfy. Also wore them when going for short walks in the early days.

As someone already said the trapped wind can be a right bugger, pack some peppermints/peppermint tea or Rennie Deflatin to help with that.

I had a radical abdominal hysterectomy 4 weeks ago; so womb, ovaries, tubes
and lymphadenectomy. Same incision as you (vertical). Top points:

1. pain minimal as I had an epidural for day of surgery and day after, then opioids
2. catheter for 3 days
3. stayed in bed all day following op and got up with help the next. I won’t lie, this was painful but they then adjusted my meds and I was fine
4. stayed in hospital 5 nights - probably would have been fine with 4
5. was walking and showering and dressing independently by day 3, including getting knickers on!! My top tips:
6. make sure your bowels are clear before surgery. With the knowledge I have now, I would probably have taken laxatives before. Wind is really common after apparently and i was very constipated after despite the stool softeners and laxatives. That was the painful bit! When I eventually did have a bowel movement it was ok because of the softeners
7. slip ons / sliders for ward and going home and make sure they are a big enough for swollen feet
8. full big knickers, 1-2 sizes up from usual
9. nighties not pjs
10. very large loungewear - I wished I’d got maternity trousers

Thank you all so much for all your practical advice! Even though I’m absolutely dreading it I do feel now that I’ll be a little bit more prepared for some aspects of my recovery.

Did you all remain swollen for a long time afterwards? It’s a pretty major trauma for the body to endure so I guess it’s to be expected for some time, especially if you’re pumped up like a balloon.🎈 Did any of you suffer major blood loss?

Puddingnpie How are you feeling now? I really hope that your recovery is going well. 💚

I had hysterectomy on 7/4/22 as an emergency due to (previously unknown) football sized cyst that had twisted & turned out to be cancerous so overall I’m pleased everything (including my appendix) was whipped out.
I have a large vertical incision from an inch or so above my belly button to my c-section scar & was stapled rather than stitched.
I wholeheartedly agree with all the practical suggestions in this post.
I haven’t found recovery too bad at all. In fact I found the uncomfortable hospital chairs making my bum go numb more uncomfortable!
I was able to put my knickers on by myself morning after op & tied my own shoelaces a few days later, you just have to be inventive how you reach them as it was impossible to bend straight down!
I’m doing so well I’ve gone back to work this week at 5 weeks post op. You’ll be fine! 😊

MrsValiant It sounds like you’ve been on quite a journey! I’m so happy to hear that your recovery is going well! Those cysts can be pretty badly behaved, can’t they?! I recently heard of another lady that had a 7lb cyst removed from one of her ovaries. That’s like the size of a blimin’ baby! You must have been so relieved once it was done and dusted. I truly appreciate you sharing your positive experience. I’ve been given a date of Friday 17th June for my op so I’m making lists and trying to get myself sorted in advance. I’ve been told I’ll need to wear the surgical stockings for 6 weeks post op, no doubt during a heat wave, so that’s something to look forward to. I’ll look/feel like Mrs. Doubtfire!