Hysterectomy - what you wished you had known

[poppetandmog]

I am having a hysterectomy next week, which will hopefully be via keyhole. I am keeping my ovaries, as only 37. I have Adenomyosis, fibroids and a polyp, and the last couple of years have been pretty miserable, so I'm really hoping this will improve my quality of life, as I am in a lot of pain and periods are horrific.

I feel really unprepared. I went into my pre-op with a list of questions and the nurse wasn't able to answer any of them (she didn't even know what procedure I was having!) It was very much a case of doing the tests and off you go. I've joined a group on Facebook which has been helpful but just wanted to hear from others that have been through it to help me prepare. If you've had this surgery, is there anything you wish you had known, or any prep you wish you had done in advance? Many thanks.

The gas pain (for me) was horrific. Take peppermint capsules if you can

What were your questions?
I am not a medical professional but I had a full hysterectomy (including ovaries and cervix) at 45 for medical reasons and might be able to help.

Recovery wasn’t that bad from keyhole and you’ll be doing more than you expect. No heavy lifting, ironing, hoovering etc, but I was able to go for walks soon afterwards.

The pain from the gas is horrible, and you feel it in your shoulder bone.

You may be constipated afterwards, so have plenty of peppermint tea, jelly babies, laxatives etc

A strange thing for me was hearing about all the famous people getting pregnant in their late 40s onwards. I had no desire to have any more children, but it did hit me that that was it (the feeling vanished quite quickly). Also, the trans movement began to get alot of traction then, and there were a lot if questions about what constituted a woman floating around.

Have plenty of things to keep you occupied - books, colouring books, music headphones etc.

I used the recovery periodic to catch up on films, tv series etc. Quite enjoyable. The anaesthetic made me feel tired, but concentrate, didn’t feel too ill.

I had it done last Wednesday so feel free to ask questions! As above, the pain from the gas is awful. Today is the first day it hasn't bothered me. I drank a lot of peppermint tea.

Ask where your incisions will be. I have 5, was only expecting 3/4 but I've 1 over my rib cage which was an unwelcome surprise. My surgeon did a hit and run on discharge so I didn't remember to ask her what it was for.

I have been much more mobile than I expected. I was pottering around my room and the hospital corridors on Thursday. And been pottering around the house since I got home on Friday. I planned to go for a bit of a walk round the block today but the weather was against me. I do think I over did it today (I was so bored I cooked dinner and was standing for about 30 mins) so I'm a bit tender now but the paracetamol will kick in soon.

Sleeping is uncomfortable. You'll likely have a catheter for the first night. My belly feels huge when I'm lying down so moving in bed feels like I'm hauling myself around after giving birth. I'm a side sleeper so I popped a small pillow under my stomach last night which made it more comfortable.

Bleeding was like a light period on Thursday and friday, spotting on Saturday and some light discharge since.

At this point, assuming things continue to go well, it'll be the boredom that's the worst of it all! Good luck with your op, I hope it's as straightforward as mine appears to have been.

I'm going to be honest the first 4 or 5 days were pretty awful. The pain was worse than I imagined, sleep was difficult. Make sure they prescribe decent strong painkillers, also laxatives and you need to have something in for the wind, I used windeze and peppermint tea. Don't try to rush your recovery, take it easy.

Reading these I realise I must have been lucky, I didn’t have gas pain at all. I also had a full hysterectomy and apart from the first night when I managed to get a kink in my catheter (not recommended) it wasn’t too bad. I just took it really easy, rested with my feet up and watched lots of my favourite tv.

I was supposed to be having mine laproscopically but then had issues during the surgery so had 2 laproscopic holes plus a full scar and ended up being in hospital a couple of extra days, luckily i prepared just in case but it could have been a problem otherwise. I’d ordered Freshwipes for cleaning myself and dry shampoo just in case and I ended up needing them cause not being able to have a shower for a few days. Apart from that I was pretty good and started going out for a walk each day once I got home starting a short one the building it up. Really needed the laxative stuff they gave me which was a novelty for me as I have IBS and tend to be very much the opposite.

They gave me discharge drug instructions which were just paracetamol and ibuprofen one day after op. Stupidly I followed them had really bad pain at home that caused urinary retention and I had to be readmitted for two days. Insist on adequate pain relief when you are discharged!

Thank you so much to everyone that's taken the time to reply. I've been jotting down questions on a note document so have attached those.

I know it sounds ridiculous but one of my main fears at the moment is having the cannula put in. I have a pretty bad needle phobia but also have terrible veins and nurses always struggle to get blood out of me - it took 3 goes at my pre op - and always ends up with me sore and bruised. (Honestly even writing that makes me feel a bit woozy.)

I think my cannula was put in when I was still under the anaesthetic. I don’t recall anyone putting it in as such.

If you have needle phobia, let them know in advance, so they can prepare. Ie. Put you first on the list so you don’t have to wait around etc.

Do you know the Calm app? Its brilliant for teaching you breathing exercises which help you de-stress and relax. I listened to it prior to an mri and the exercise I learnt helped me to relax during moments of stress. There’s also calming playlists, stories to listen to, soothing music etc .

Why would you want a photo of your uterus?

I know it sounds odd, but I just wanted to see a photo of the thing that had caused me so much pain over the years. Almost as a way of getting closure that it's finally gone.

I was given two laxatives - Senekot and Dulcolax. I wish I hadn't taken the Senekot. It caused bloating and abdominal pain that was the worst part of the whole experience. I know it was the Senekot because I took it again at a later stage and it did the same thing.

In the long run, the surgery has literally been life changing. I'm so glad I did it.

Ask them beforehand. I asked for a picture of my ovarian cyst when I had it removed and they took one and gave it to me 😁

Emotionally I found it hard. I felt a sense of loss after mine , in terms of not feeling like a female anymore. As mad as that sounds.
I went straight into surgical menopause and struggled with this feeling for a while. I’ve not even really shared my thoughts or even my operation details with anyone really because mine has been so complicated.
To be honest, I had a horrendous time. Post op complications and then I was subsequently re admitted with Sepsis. I was very unwell and it was really hard going.
In terms of the pain, mine was hideous.

As others have said , peppermint tea etc for the gas pain.
Everyone is different. You should be absolutely fine. I was just a little bit unfortunate and my situation was quite rare I was told so please don’t be alarmed.
I know lots of people who have sailed through it.
Best of luck to you.

@poppetandmog for future blood works ask them to use a butterfly needle if they already don't.

That having this type of surgery could lead to bowel obstruction years later from scar tissue healing.

Not to be graphic, and I wasn't interested so didn't ask specifically, but my understanding from reading around the procedure is that the uterus isn't removed in one piece so a picture may not be possible or pleasant.

I usually hate canulas but this one was definitely less bad, it seemed to be shaped differently so sat better in the crook of my arm.

Another vote for peppermint tea and Love Heart or Refreshers sweets, I had a full abdominal hysterectomy and the wind pain was something else!

I don't think that's odd at all. When I had a total hip replacement, I asked them to keep the head of femur so I could see what had been blighting my life for years. They said no.

@Gorgeousfeet

”Emotionally I found it hard. I felt a sense of loss after mine , in terms of not feeling like a female anymore. As mad as that sounds.”

I felt the same, (and still do with all the trans talk ), plus the option of having more children was taken away from me, even though I had no desire for any more children, and I was heading towards the menopause anyway.

My mum always had small veins so drs used a child's needle. Tell them you have a fear and they will manage it appropriately, they will have had to reassure patients with similar fears.

• I don't think you will get blood thinners as there is a risk of bleeding in surgery.
• you won't need a spinal and a general anaesthetic. It's one of the other.
• I was first on the list and stayed in one night.
• you should wake up in the recovery ward and then be moved to a general ward
• the hospital should offer a sick note when they discharge you.
• you should be sent home with pain relief but I think I was just offered paracetamol/ ibuprofen so can be bought in any shop
• it is recommended you take 6 weeks before returning to exercise but I think you would have a post op check up.
• a consultant came to see me before I was discharged to check wounds. Ward staff change dressings. I didn't have packing.
• no idea about the photo. You can only ask!

This is just what I remember from my op and the hospital I was in so might be different for you.

I was last in and had to stay a couple of nights but that was mostly because I don’t get on well with anaesthetic. I didn’t have any gauze packing but I did go home with a month’s (i think) supply of clexane blood thinner which I had to inject myself - I didn’t really enjoy that bit but it wasn’t too bad.

I also felt a sense of loss to an extent but as it was removed due to cancer that was tempered with relief.

My hysterectomy was for cancer too, so also relief, but real genuine sadness too, because I had no choice over it. Since my first period my uterus had never caused me any trouble at all!

I had packing but it was removed when they took my catheter out, the morning after. I had trapped wind, drank peppermint tea, but not sure how much it helped. Lying completely flat was painful during recovery, so I used a pregnancy pillow under my legs, that helped a lot. Kept up with the painkillers.

Good luck, recovery isn't a walk in the park, just take it easy and don't do too much too soon.

Everything you’ve said really resonates with me too.

It’s hard to get your head around. However, we still females.. there was just parts of our body that needed to be removed.
Hugs 🩷

Do they put the catheter on when you are awake? I'm on the waiting list for one and I'm so worried about the catheter.