Hysterectomy. Please share your advice, tips and stories.

[neverbeenskiing]

I have been told I need a hysterectomy urgently due to very severe endometriosis. My consultant thinks it's likely my ovaries will have to go too, as they're stuck to my uterus with scar tissue. My cervix might well have to be removed too, they're not sure. They're going to attempt to do it laprascopically, but I've been told my endo is so extensive this could prove tricky and they may well end up having to open me up and do abdominal surgery. I won't know if I've had keyhole or open surgery until I come round from the GA. This makes it harder to plan in terms of my recovery, work, childcare etc.

I have young DC and DH works FT. I have family close by who can help. But I'm still worried about the recovery. I don't have a date yet for surgery but have been told it will not be later than December.

I have a lot of questions swirling around my head. What exactly happens before and after the op? I've never had a GA before so a bit nervous about that too. How long will I be in hospital? What should I take with me to hospital? Anyone have any tips to speed up recovery or just make it more tolerable? I have been put on Zoladex injections and have been told once these stop my periods (hopefully in a few weeks) I'll be put on tibalone (hrt) but I'm wondering if I'll still get menopause symptoms after the surgery? I'm assuming I'll have to keep taking the hrt?

Any advice, experiences or recovery tips would be very gratefully recieved. I'm really scared to be honest. Particularly interested to hear from others who have had this surgery in their 30's.

Thank you.

I had mine - total abdominal hysterectomy & oophorectomy - in my early 40s. Very similar to you - endo had fused everything together, including my bowel. I'll answer based on my experiences:

• What exactly happens before and after the op?

You will have your pre-op a few days before. This is a long questionnaire where they ask you about your medical history and general health, also check weight and blood pressure and will ask for the date of your last period. I had to fast before my operation and was admitted in the morning. I had an epidural before the GA. With the GA all that happens is that you have a split second of feeling very relaxed and, the next thing, you are coming round after the operation - there's no sense of time passing or anything.

When I woke up the first thing I did was check I still had feeling in my pelvis (I did). You will have a catheter in and be on pain relief. They will check on you regularly to see if you need more, and check your blood pressure and so on. At some point the following day you will be encouraged to get up and have your first wee. There will be a lot of blood! I followed this with a shower and felt much better. It's then just a question of how soon you are ready to be up and about and go home; you'll be encouraged to potter about as soon as you can.

• How long will I be in hospital?

I was in for 48 hours but everyone is different.

• What should I take with me to hospital?

Loose, soft clothing to wear after the operation. A supply of sanitary towels. Books/devices etc. Cleansing wipes to use on your hands in bed. A drinking straw makes it easier to drink when you can't bend easily. Peppermint tea might help if you have post-op heartburn (common). When you go home, take a pillow to put between the seatbelt and you in the car, as this will make bumps much less painful.

• Anyone have any tips to speed up recovery or just make it more tolerable?

Be guided by what your body is telling you. Make yourself a recovery area at home - pillows, entertainment and so on all in reach. If you don't have anyone to cook for you, stock up or prepare meals beforehand that you can simply heat up. Then potter about/rest as your body dictates. I was off work for about six weeks recovering, then I went back on a phased return which I would recommend.

It was a great decision for me to have the operation, and well worth the short term pain and inconvenience to be permanently freed of pain and difficult periods.

Hope it all goes well!

Best thing I ever did. Had the whole lot out and haven’t looked back.

Initially I had 6 weeks off work but at the end of the 6 weeks I wasn’t work ready. I took another 2 weeks and I was ready to return, I hit the work ground running.

I was in hospital for 2 days. I took whatever painkillers I was given and was able to manage the pain easily enough. My DH did all housework at the beginning but I was able to start doing bits and pieces about 6 weeks post surgery. Obviously I could only leave it that long because I have a very supportive DH.

Re. menopause. If your ovaries come out, you will start menopause straight away. I had my first hot flush within a few hours of losing mine! Talk to your consultant about what HRT you will need, but many people do go straight onto it or continue with what they were on before. If you keep your ovaries, your periods will stop but your ovaries will still be functioning, so you might not need HRT at that stage; again, your consultant will advise you.

I had a laparoscopic hysterectomy for adenomyosis a few week ago.

I went in at 6am. Theatre at 8.30am and ward by 3 ish (I actually don't re,ember being transferred there from recovery ) and I left to go home at 8pm.

Abdominal will take longer and can be 5 days in hospital. So have overnight stuff ready, long chargers for phone, neck fan, toiletries, night clothes and maybe some squash. My mouth was very dry after the surgery!

Then have a bag packed at home for an extended stay if needed that can be dropped off to you.

Take some pads in case you need them (I got loads of heavy duty ones and never needed anything!)

The main thing is the fact that the feeling afterwards that you'll never flood again is fantastic!

And with regards recovery I was quite tired (actually I was completely whacked ) for the first 5 days. But I could do stuff.

By week 2 I was up and out taking ds to his daily training.

I went to work after 3 weeks but did admin tasks only. I couldn't have returned to a supermarket job or similar.

My top tip is for whoever drives you home from hospital to bring a pillow with them. Put it under the seatbelt/over your surgery site. Made my (long) journey home massively more comfortable.

Didn't want to read and run.
I'm 51, so older than you, but I had a sub total abdominal hysterectomy last year- they left my cervix. If it helps, my three days in hospital were hard, but I did get better quickly, and improved day by day at home. I was fit which helped, so your age is on your side for recovery, just follow what they say ( for example, little bit of walking each day, don't sit down all day).
The general anaesthetic was not new to me, but the anaesthetist will speak to you beforehand, although this will be on the day. Don't be afraid to ask questions or say what you're worried about. They are in charge of your pain management. After the op they gave me various meds for pain and had to switch them for me because of nausea.
Some pain meds like codeine can cause constipation so they should give you laxatives, and if they don't, ask for them. Getting the bowel moving is v important and the wind was I have to say more painful than the wound- once I'd shifted the wind and had a bowel movement- a few days later- I was really improving.
It sounds as though you have really been through the mill with gynae problems, as most who have a hysterectomy do. Once it's over, you will be able to get better and be free of those problems, so hang in there.
Your doctor will tell you what medication to take on the run up to the op. I had to wait 6 weeks sfter the op before hrt was given to me- lots of hot flushes, about 8 a day, but the hrt sorted those quickly. ( I also have ovestin cream for dryness, again, don't be afraid to ask, it's important you feel like 'yourself')
Oh, and take flip flops or slides to wear in hospital as you won't be able to bend, and get some cheap big knickers that'll come above the wound. ( I was told not to lift anything for 6 weeks- so my husband was on kettle duty). A V cushion was helpful for sitting on the sofa or in bed and a pillow under your knees in bed was a godsend. Hope that helps.

Oh yes and I highly recommend a large battery pack charged up to charge your phone whilst in hospital. I couldn't get out of bed and fuss with plugging it in, and the battery pack kept it going for 3 days.

I had a the full works out at 48 due to endometrial cancer. I was in at 7am one day and home by 3pm the next. Mine was laparoscopic. If it's a vertical incision you may end up being in hospital longer.

Take a long phone lead, sanitary towels, although bleeding should be minimal, and peppermint tea. The wind is on another level!

When you are home you must take it easy. No lifting at all. You might be given some anti-coagulant injections to do yourself every day. They are stingy little bastards but necessary if you aren't too mobile for a week or so.

Good luck OP. If you are on Facebook, I recommend the Hysterectomy Sisters UK group. They are very supportive and will try and help with any questions.

Thank you all so much. I already feel more prepared reading these responses.

It sounds as though keyhole vs open surgery makes a big difference to recovery time, so I think I will have to plan for the worst and tell work that I could be off for 6-8 weeks and anything before that is a bonus.

I had a radical hysterectomy by open surgery. My lovely GP was very supportive and prescribed Laxidol for me to take, starting the day after surgery. Anaesthetic drugs and painkillers can make you constipated, which is the last thing you need. She also told me to take bottles of water in with me and to start drinking plenty as soon as I could. This helps your bladder to start working again. I was out of bed and pacing the ward the next day, which is so good for your circulation. You don’t want a clot forming in your leg.

Yes - if you have abdominal surgery, the recommended time off is 6 - 12 weeks - it will depend on how active you have to be at work. I could get away with sitting at a desk, at least for my phased return period. Even so, after working 3 hours on my first day back, I literally fell onto my bed when I got home and slept for 3 hours, I was so tired! I built back up to full time gradually over 4 weeks, which was fine. I would definitely suggest a phased return if it's possible.

@Antarcticant thank you. I only work 3 days a week but they are long days (10+ hours) and the job itself is very demanding. A phased return sounds sensible.

I had a laparoscopic hysterectomy, had the op on a Friday evening & was home by 9.30am next day. You will most likelyhave a drain in your stomach & a catheter, mine came out at 5.30am, make sure you have some large waterproof dressings because the site where the drain came out of weeps fluid for a couple of days. Drink as much as youcan to avoid a uti after the catheter. Take some arnica tablets, Rennie Deflatine & peppermint oil capsules for the gas pains afterwards, take some wet snacks because your throat will be very dry, I took cubes of mango & slices of watermelon, this also helps to avoid constipation from the painkillers. Don't be worried if they send you home with antibiotics, it is normal. Take a folded blanket or towel to put between you & your seat belt for the journey home & some loose clothing as you may be a bit swollen & bloated, I wore a long top & leggings then swapped to a loose sundress when I got home. Though you need to rest you can potter around, I read, watched TV & helped get meals ready but didn't do any lifting.

Abdominal will take longer and can be 5 days in hospital.

This is what I'm worried about. I absolutely hated being in hospital after I had my babies, I found the lack of privacy, and not being able to sleep due to the noise really difficult. Desperately hoping they can do it laprascopically so I can come home sooner.

I didn't have a drain and my catheter had been removed before I even came round properly in recovery.

Another piece of advice - you may have to inject yourself with blood thinners for a period of time.

I had one the evening in hospital before I left. Then had to inject myself everyday for the next 7 days.

It's very easy (did sting a bit!) but it's something I'd wished I'd known was a possibility before I went in rather than suddenly being taught in my dozy state before discharge!

You might not need 5 days even if you have an abdominal - I was only in for two nights and I certainly wouldn't class myself as super fit and healthy (I smoke and at the time of my operation I was overweight). They won't keep you in longer than they need to - if you can get dressed, walk about, eat and use the loo and your blood pressure etc. is OK they will let you go.

Thank you. That's reassuring.