Total Abdominal (Bikini cut) Hysterectomy next week..yikes!

[Jingles11]

Hi all

I’m hoping someone on here is able to give me some reassurance, I’m wondering if anyone has any positive experiences of having a total hysterectomy? I keep reading about the extremely difficult recovery (which I do expect) but I’m starting to get really anxious about the whole procedure..

I’m also going to go down the private route(thanks to the generosity of my parents)as the NHS waiting list is so long in my area and getting longer with no date in sight.

I’m currently having prostap injections to try and create chemical menopause and shrink everything down and stop the bleeding which has been truly horrendous due to multiple fibroids, adenomyosis and endometriosis on my ovaries.. I haven’t been able to work properly or lead any kind of normal life for about seven months.

I’ve had previous surgeries to remove really large fibroids (Myomectomy) so I have some idea of what to expect post op but I would so appreciate some happy experiences/stories.

My mum had a very bad experience having a hysterectomy in her 40s thirty years ago, with infection and pain etc and the memory of it looms large in my mind!

I’m 51 and I’m done with having gynaecological problems I’ve had various issues for about 20 years so I’m grateful to be having a hysterectomy, just very daunted by it all.

[HGate]

Hello Jingles,

Medicine has moved on significantly in the last decades. I also went private (was waiting under NHS for 18 months and couldn't take another period). The care was amazing and they got me home the next day. I used my savings, but it was worth every penny, as it's such a big life event. Make sure they give you physio follow up and if not, search for it online - I had some good bed exercises to do. Breath work can begin on day 1 of recovery - helps to get all the drugs out your system.

Have you got the book '101 Tips for a Happy Hysterectomy'? It's really good - though even some of the scare stories in there were a little out of date. There is masses you can do with good self-care and preparation. The book helped me to make it a project for myself. Here are my top tips.

I had NO bruising and I put that down to taking arnica, both internally pre-op (they allow it, I had some made up in rose water I think and put droplets on my wrist perhaps? Hard to remember now) I also put an arnica cream on around the bandage and applied it topically as soon as the dressing came off.

I used the wonderful calendula (marigold) cream. It is AMAZING. I also took it internally, as a tea.

I also used manuka honey water topically once the wound started to heal, but I'm not sure if that's recommended!

Also good:

Rescue remedy (though care with mixing with medication)

Essential oil room spray / roller balls for home and hospital

Shoe horn, grabber to pick things up off the floor.

Start a shopping / borrowing list - lots of friends and family were amazing at buying and lending things. I packed a massive bag of treats for myself.

Bikini line cut is great news. Mine was vertical - a bit challenging to get my head around, but I brought some really lovely high waisted swim wear pre-op, to take away any feelings of loss.

They are really keen on mobilising asap and I began walking the day after the op. Walking was my saviour. I did walking (just around the house / a few mins outside) - rest - light physio - eat - drink REPEAT.

The emotional journey for me was hard, because I'd never had children. I have had masses of therapy around that aspect and now, a couple of years on, I have the energy to begin working with children and have found a way to turn it into a positive.

I would definitely recommend this operation.

Take good care,

Hannah x

[Jingles11 in reply to HGate]

Hi Hannah

What a fantastic reply!Thank you so much.

I’ll definitely order the “Happy Hysterectomy” book and the calendula, I already use rescue remedy and had thought to use arnica but wasn’t sure..mmm Manuka honey, I might give that a go too.

I think if I feel that I can do things to be proactive it will make me feel more in control of my recovery.

I’m glad the private hospital was a good experience, I found it quite difficult to finally decide to go down the private route but like you, the thought of another horrendous period and a long NHS wait was just too much physically and mentally.

I’m so glad you’ve been able to turn the fact of not being to have children into a positive, it must have been a really difficult position to find yourself in and now you’re able to work with them, thats amazing

Thanks again for your reply, it’s made me feel much better.

Xx

[LouiseD1]

Hello Jingles11, I can imagine the worry you are going through right now, the waiting is the worst and the good thing is you will soon be through the op and out the other side. I can't tell you it's going to be easy peasy but what I can tell you is that almost 4 years after my SAH, I feel amazing and am so so glad I had it done. I was 48 when I had mine for large fibroids, bikini line cut too. The recovery can be slow and I had a very tough time with infection in my wound but I was just unlucky. You do need to take it very easy after the op and the key thing is to listen to your body, it will tell you what it can do and when you have done too much. Set yourself up with lots of people to fetch and carry and help for a good few weeks after the op, make sure things are at waist height (you won't want to bend for a good long while). Learn how to do the log roll movement to get in and out of bed, and most importantly just be kind to yourself. If there any questions you think any of us could answer, do just ask ! Good luck for the op xx

[Jingles11 in reply to LouiseD1]

Hi LouiseD1 Thanks so much for taking the time to reply,Yes the waiting is the worst, I just want to get it over with so I can start my recovery.. Sorry to hear you got an infection, that must have been difficult, I have my fingers crossed it will be a straight forwards recovery for me..How long did you stay in hospital for?it seems like two nights is the norm all being well..

X

[LouiseD1]

Hi yes I went privately and I was in 2 nights. I hope you have someone who can look after you at home, my hubby had to do pretty much everything for me for a good long time. Hannah's tip on the book is a great one too. Don't hesitate to get in touch before or after the op if you want to ask anything or just want to have a good moan, there will be some tricky times but you will be able to do it x

[Jingles11]

That's good to know..Yes my husbands been well instructed! Haha my twenty something kids have too,so i do have support. I've literally just ordered the book that Hannah suggested. Thank you for your positivity, it really helps And i'm definitely up for a future moan and I'm sure I'll need some advice further down the line. Xx

[HGate]

Check on all remedies with your medics - I'm pretty sure they were okay with arnica, but I think you do have to notify them.

I took peppermint tea bags into the hospital, just in case, but amazingly, they offered it to me immediately on waking. It helped hugely with the 'swelly belly'.

Do you have one of those V cushions? I ended up just using normal cushions for sleep, but they are recommended. There's some good safe / healing sleep positions online, using pillows - I seem to remember something about putting cushions between your knees.

I slept downstairs initially (our stairs are steep). I made it nice for myself and it was helpful for us to sleep in separate beds initially. I just wanted to eliminate any hassel / risk.

One small thing - one of my greatest fears was that I would put on weight. Maybe I did a tiny bit, but if so, that was because I was previously walking around like a skinny anaemic ghost pre-op. I am now definitely fitter, because I have so much more energy. I had gotten to the point where I was struggling to walk for 30 mins. I can now garden for several hours.

I was really open about my vulnerabilities in the hospital and in floods of tears at all the appointments and on the day of the surgery, right up until I went to sleep. The staff were amazing and they do understand how big this operation is. The anaesthetist said 'in my whole career, this operation brings up the most emotion for people'. When I walked into the theatre and saw the whole team turn and smile. It was an incredible feeling.

I hope that you are blessed with the same experience. Set your intention to love and care for yourself and they will do the same.

Take good care,

Hannah

[Jingles11 in reply to HGate]

Hi Hannah

I’ll check to see if the hospitals ok with the arnica, I’m currently taking gelsemium homeopathic remedy for anxiety and feelings of being overwhelmed etc, it seems to help a bit.I have a V shaped cushion already hopefully it will make things a bit more comfortable!

I was wondering about the potential weight gain,I’m pretty skinny at the moment probably because of all the blood loss and stress so i don’t mind putting on a few pounds and I definitely need to build up my stamina. I haven’t been walking as much as I should because of feeling fatigued and also with the worry of sudden heavy bleeding i’ve been unable to stray too far from home or a toilet!!

I’ve been in floods of tears at most of my appointments too, which is very out of character for me…partially it’s because of the frustration of not really being able to get the help I’ve needed, hence the private route, which i’m very grateful for.

I’m also quite shocked at how women are left to suffer in terrible debilitating situations without any actual support and expected to carry on a normal life.

Its great that you had a good experience I really hope I’m blessed with a good experience too, thank you for all of your wise words I’ll definitely set intentions.

Xx

[HGate]

I hope you have had your surgery now and you're on the road to recovery.

[Jingles11]

Hi Hannah

Yes everything out and on the road to recovery, I’m just over 10 weeks post op and feel so much better. I’m definitely following your advice on really caring for myself and listening to my body and i’m gradually building up my walking distance and general stamina. The V shaped pillow was a god send, I’m still using it! Thanks so much your advice was very useful Xx