Is there a hysterectomy support thread?

[ALemonyPea]

I had a laparoscopic vaginal hysterectomy, retained ovaries but everything else removed.

Day 6 for me, and I have some questions and would like some support as freacking out about the thought of vault prolapse.

I am managing pain wise now. Some slight pulling on one side, but manageable. Belly button keeps bleeding, but not enough to run out, so just cleaning it twice a day.

I feel quite heavy down there, is that normal?

I thought I had read everything there was about hysterectomies before I had the op, but the surgeon mentioned vaginal vault prolapse just before the surgery and explained it briefly. I then googled, and the first page brought up an awful image and I can't get it out my mind. I'm terrified that it'll happen to me.

Can anyone offer any help and support.

It's probably all a bit in shock down there Hyster. No nothing beats your own bed, or your own loo for sure.

I've had quite a nice day. Even sat in the garden having a read this afternoon with a blanket over my nap like a little granny. I know my patch has kicked in as my boobs tell me so. So that's good.

Morning all!

Firstly lemony nice to have you back. Can I just say a mahoosive thank you for opening this thread as I have found it a great support, really useful info wise, and lovely to share with others. Nicely informal compared to those big forums which I find a bit too much. Delighted to hear you have made such a great recovery, give or take wind 😀

robots thrilled you have come out the other side and are home and relaxing. Remember not to pick up your cats! Dh has just reprimanded me. We have 4 enormous cats who have been very understanding and companionable since I got home (i.e. Have left no room at all on my bed!) but I dont think I am allowed to lift 7kg yet! Hope your appetite has returned too.

hysteria hope you are continuing to recover and you get home today. Weeing seems odd for most of us, I was worried I was getting cystitis but seem better today. I am definitely making a point of visiting the loo even without an 'urge' as I always then pee freely. Imagine it settles down as long as you are vigilant for a post-catheter infection.

greyboot not long to go, enjoy the next few days. I am living proof that it doesnt matter how big your fibroids are, in terms of impact on recovery from surgery. Although mine were not too bothersome, it is delightful to be immediately aware they are no longer there. And my bladder and bowel seem exceptionally grateful for the extra room!

mybeloved your op is still a wee bit away, if I recall. The one thing I would recommend is to at least attempt to improve your upper arm strength as, no matter how well you feel, and no matter how well your pain is managed, trying to move post surgery is really frustrating. Think beached whale.
Do practice pushing yourself upright to a sitting position with your elbows, and a bit of rolling to your side combined with arm pushes. Am sure there will be exercises/instructions somewhere on the interweb.

BG fingers crossed you are back on track now and get some satisfaction from your interaction with PALs.

I am, I admit, having a lovely recovery so far. Have had sis and bil to stay for last 4 days and enjoyed being sociable (with occasional rests). Off all meds, and on Saturday managed a very long walk around our local nature reserve, and had a really memorable lunch with a celebratory drink. I had a quieter day on Sunday to recover though. My abdomen is still swollen/tight (amazing how it grows through the day!) and my right side is much more tender than my left, but I assume thats all part of the healing process. Only surprise is that my follow up date has come through for late August which is some way away. (They said it would be 6-8 weeks which would be early June). So I guess any conversation on HRT will have to be initiated with my gp, like Arch

Sorry for such a long post. Enjoy your day everyone!

Good to hear you are doing so well Gig :) I'd echo your thanks for this thread, it's so good to chat and share experiences.

Appetite is definitely better, I think I was just really really bunged up taking movicol and also lansoprazole as I'm prone to gastritis. I'm doing ok on very regular nurofen and paracetamol.

odd conversation with gp receptionist, it's so hard to get an appointment at my doctors surgery, so I thought I would guess that my stitches probably won't dissolve, nurse said that was likely and made an appointment for the end of the week. I was asked how many stitches I needed removing and whether I would need dressings. How on earth do I know?

Anyone else having really weird dreams/nightmares after their op? started in the hospital and still going. I woke up sobbing in the middle of the night and had to ask dh that he wasn't planning on moving to the States for a year without me

Gig, when did you have your op? Sounds like your recovery is going very well indeed!

Robots, glad to hear that you got out in the garden - sounds lovely. I have patches too evorel 50, first one goes on tomorrow - how long did it take for you to know that it had kicked in?

I would also like to thank Lemony for this thread, I have found it to be a great help and comfort.

News from me, I am off home today thank goodness as I wasn't getting any rest in hospital and want my own bed. I have also (TMI ALERT!!)
had a poo which wasn't too bad at all I, do I carry on with the movicol now do you think?

It's been a gradual thing Hyster, I started them on Friday and noticed my boobs yesterday I think. They just feel a little pre menstrual from the olden days when I guess I used to have more hormones. Also slightly headachy. I've had two or three slight overheating episodes in bed, accompanied with a feeling that I've doomed myself to an early death, which passes when the overheating passes. However, I overheated much more at times before the op, so I'm convinced I was in peri before.

How much movicol are you on? It's worth cutting back but still maintaining it I think.

Thanks Robots, I am on two sachets of movicol a day at the moment.
I am nervous about starting the patches, first one for me tomorrow.

There wasn't any great woosh of hormones or anything :) I do feel a bit silly with a plastic square stuck to my bum and it's slightly hard to adjust to the fact that I need to remember to swap it twice a week. I'm also finding it hard to get used to the idea that I'm dependant on them for a good quality of life.

I keep reminding myself of how many millions of people take the contraceptive pill which effectively takes over your bodies hormones. I should be on the patch for less time than I was on the pill.

Maybe drop to one movicol a day and see how you go? It's the sort of think you can go up and down on easily.

hysteria this is my Day 11 post op.
robots no wild dreams here, but through hospital to now I have gone to sleep listening to audiobooks which fill your head and leave no room for other stuff, I find. (and conveniently block out hospital noise too)

Hi all

I had a phone call from the Investigating Officer from PALs this afternoon. He had noted that I had seen my consultant last Thursday and written all over my notes is "this patient saw me today for discussion about surgery only, this is not a new referral'

He said that my actual pathway started on the 22nd February when the consultants secretary who I saw in early Feb wrote my notes up and sent whatever paperwork needed sending off. He asked me if I felt the matter had been resolved and did I want to take it further? He said that he would pass on the mis-information given to me to the relevant parties and the case would remain open if I wanted.

I just said that I felt that the secretary was at fault here. Apparently she would have been able to see the exact same information that he could see on the computer, so why not tell me that. Why keep it from me? It clearly states in various letters that I was on the pathway from the 22nd.

I said that it what I wasn't happy about, she was refusing to give me information for what ever reason and had caused me distress because of it. He agreed that he couldn't understand why I had been mis-led and reiterated that my comments would be passed on that they had failed in that area.

I'm happy with that. Let's hope I hear something soon.

No need to thank me . I started this thread as couldn't get any advice from anywhere on t'internet.

Good luck BG, hope they do make it so your pathway started on 22 Feb. Fingers crossed.

I actually have no follow up appointments, I wonder if it's because I don't need HRT. I did have open access to the ward for the first six weeks though.

It's good to hear you're feeling better, Robots. It took me at least a week to get my appetite back - I think it was the codeine affecting me. It soon returned with a vengeance .

BG Glad to hear they are taking your complaint seriously at last!

Hyster I agree with Robots, try cutting down to one sachet and then adjust back up if you need to. Hope you have a great night's sleep now you're back home!

I second thanks to Lemony for this lovely thread.

Afternoon everyone, I hope that your recoveries are continuing well?
Any news BG2015?
I am feeling OK but have a very odd pain in my bum! It feels like how I imagine having a red hot poker inserted! No idea what is going on as not had any problems with going for a poo.

Hello everyone,
I'm slightly lost by who's who, so please forgive me for not being personal, but I hope you're all ok.

I had my pre op assessment this morning which went fine.
I'm down for laparoscopic surgery, but consultant originally said it would be open, so I have to find that out on Thursday (operation day)
We mentioned ovaries and I said I'd like to keep them. The Dr made it seem like it was up to me, but surely it's better to keep them if possible? (that's what I've read anyway)

My lovely mil has offered to pay for a cleaner. My dh is ok, but with four boys at home... just imagine!

Sorry for long post

Greyboot welcome and wow to 4 boys, I have 2 and that's a nightmare, they're 14 and 17 now so pretty self sufficient but still messy and inconsiderate.

How old are you? I ask because the ovary thing is very much dependent on age, I'm 48 and 2 consultants have said they should be removed to stop further complications in the future. I'm still undecided!

Hi BG
I'm also 48!
What are the possible complications?
I've not actually discussed ovaries with my consultant at all 😳

Everybody is different and in different circumstances but happy to share my pros and cons which helped me decide to remove my ovaries at same time as my hyst. and fibroid removal.

Removal pros
Reduced risk of cancer.
Removes endometriosis and endometrial cysts.
Cannot get other ovarian cysts. Have history of ovarian cysts and overstim of ovaries with IVF drugs (the long term effects of which could be an issue, although latest studies show no correlation of drugs with later ovarian ca)
Avoids additional future surgery.

Removal cons
"Plunged into surgical menopause" (and its associated issues, bone density, HRT etc)

I have included that emotive "plunged" phrase under cons as I have seen it a lot and it really irritates me 😀. I am 53 and was perimenopausal anyway with intermittent periods and a couple of episodes of hot flushes and sleep disturbances due to feeling too hot. My sister had an uneventful and unproblematic menopause. It was going to happen anyway, so this didnt sway me. So far I do not feel "plunged" into anything but accept it is early days post-surgery.
(You will note others have been put on HRT straight away)

I will need to discuss the extent of my endo found during surgery at my follow up as it can affect the bowel and can still be exacerbated with HRT. So I dont have all the answers but I didnt find it difficult to decide in my situation.

Found this article credible and balanced www.medscape.com/viewarticle/830505#vp_2

Gighas, thanks for your advice. I keep swinging from take them out, to leave them in.

I have no history of ovarian cancer in my family, or endo. I have no cysts around my ovaries at the moment.

I've heard various things from...1. your ovaries get a boost of hormones when you have surgery (don't know if that's true), 2. your ovaries carry on producing hormones well into your 50's

TO.....1. the blood supply is cut off from your ovaries so they stop working anyway 2. a risk of scar tissue/cysts can cause complications and surgery can be difficult 3. there is a risk of ovarian cancer 4. HRT can be hard to get right with many GP's not knowing what they're doing/prescribing!

I'm totally confused with it all. I'm getting hot flushes/night sweats already so I know the menopause is approaching. I'm leaning towards keeping them in but then I read something else and change my mind.

BG I think it is a really difficult decision for most women and not helped by many consultants leaving it optional to the morning of surgery. You really have to have decided before then surely!.

I dont think I had a real debate about it with my surgeon, it was more "why wouldnt you", but perhaps with my history thats just because the case for removal was so compelling compared to other patients. I am lucky in that regard, as on paper at least its clear cut.

Keep reading and asking questions and hopefully you will get to a firm decision that you are happy with.

Welcome Grey. I was told that I might need to be cut once they were in laparoscopically as I may have had scar tissue from previous 3 sections. Luckily I didn't. Good luck with your oncoming operation.

Thanks everyone,
My hysterectomy is purely for fibroids (big buggers too!)
No endo or cancer in myself or family.
I don't have any menopausal symptoms at present, so really I feel I'm better leaving ovaries in.
It will be a conversation on operation day that decides it though.

I wish it hadn't been left up to me as it's my nature to second guess my decisions. It didn't help that had one gp say don't and one say that it seemed like a reasonable idea. I had mine out because the surgeon felt it would help with other conditions that were made worse at certain times of the month. So far, a few days in, that seems to be true. They are better :)

I'm mostly scared now of what if my hrt doesn't agree with me at some point. So far it seems great and I'm having very little in the way of menopause symptoms compared to before the op. I worry that my decision is irreversible, but I made it for hopefully a better quality of life. Bit worried about when I have to come off it, but hopefully I'll be able to taper.

I think if you are a worrier, then having them out can provide its own form of torture, but hopefully that will settle as I adjust to the idea.

greyboot just popping on to say good luck tomorrow. Have a nice relaxing day today if you can.
I told my dh (in passing and absolutely not making a point) about your lovely MILs offer of a cleaner, saying how thoughtful that was, and he was quite sulky, as if that gesture was a clear and justifiable slight on men-cleaning ability worldwide .
Anyway, it made me laugh and there has been a subtle uplift in cleaning/tidying activities here as an added bonus.
Good luck and look forward to hearing from you when you can.

When is your operation Grey?

I've been losing my hair in clumps the past two weeks, and wasn't sure what might have caused it, my hairdresser today it is more than likely mynhystwr crony,so there you go ladies, another post op thing to look out for. I had this after I had each of my DC, so makes sense really. Luckily I have thick hair, so it's only noticeable at the sides.

Can we have a quick list of when everyone's ops are please, and perhaps those of us who are post op, as I feel I've lost track of everyone.

ALemonyPea - 9 weeks post op

That made me smile Gig!

Operation tomorrow,lemony...

Feeling quite emotional today, busy, but relaxing day really so far.
Think I'll take the boys to the park and out for tea, then home to pack 😳

Grey - Hope everything goes smoothly tomorrow and you've had a relaxing day today.

BG Re. ovaries - it is a very difficult decision. Mine had to go because they were already badly damaged by endo, plus while they were there they'd still be producing the hormones which stimulate the endo - so it was all about the endo in my case, as I have no family history of gynaecological cancer.

One question to ask your consultant is that if you don't have them out, what's the chance of your needing to have them removed at some later point?

For keeping track on thread, my op was Dec 1st - so nearly 5 months ago (doesn't seem like it as time has flown).