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Hysterectomy -- questions/reassurance pls!

(27 Posts)
eversomuch Mon 27-Jun-16 16:49:03

I'm scheduled for a subtotal hysterectomy in early October because of large fibroids. I suppose I'm nervous and starting to question having the surgery. My main symptoms are frequent urination (I haven't slept through the night in at least 8 years!) and looking 5-months pregnant all the time. I know these symptoms are mild compared to some people's. Is it extreme to go for surgery for these reasons?

In a couple of weeks, I'm supposed to have my first gonapeptyl injection, with another two injections scheduled for August and September. My understanding is that this may help to shrink the fibroids (largest is 10-12cm), though bc the fibroids have calcified, it's probably not going to make a huge difference. I was told though that it's worth a try it it makes the procedure easier.

I'm curious what others' experience with hysterectomy is? And has anyone been on gonapeptyl? Should I be expecting miserable menapausal symptoms over the next few months? In some forums, I've seen people mention continuing with gonapeptyl after surgery, but the doctors I saw didn't mention this. Is this common?

My two children were c-sections and my recoveries went smoothly for the most part, so is this perhaps a sign that recovery from this surgery would also go smoothly? I'm definitely not as physically fit as I was pre-pregnancies, so part of me wonders if I should postpone for a few months to get back in shape a bit to help recovery, or if I should just go ahead with it.

Thanks for any comments.

bluebelle2662 Mon 27-Jun-16 18:02:37

My mum had a hysterectomy and she says it is the best thing she has ever done. She takes HRT and her mood has been considerably better since. She recovered quickly and with no complications.

If they've offered you the surgery then they obviously think it's necessary, so go for it

Costacoffeeplease Mon 27-Jun-16 18:22:18

Just get it done asap, I had a hysterectomy due to large fibroids and yes, best thing I've done. Recovery will take a long time (if it's an abdominal op) but worth it in the end

eversomuch Mon 27-Jun-16 22:02:50

Thanks for the replies -- it's good to hear about such positive experiences overall.

Costa Yes, I expect it will most likely be abdominal, hopefully they can go through my c-section scar. If you don't mind my asking a few things: how long did your recovery take? How long was your hospital stay? When were you up and walking comfortably? When were you able to resume a sex life?

Really appreciate the replies.

rosepetaltea Mon 27-Jun-16 22:20:34

Have you tried Esmya? It's a drug you take daily for three months. It stops your periods and has reduced my fibroid by 50% so my symptoms have decreased dramatically.

megletthesecond Mon 27-Jun-16 22:23:51

They went through my c-section scar(s) for my hysterectomy. Consultant even said he straightened it up a bit.

Fwiw I found my hysterectomy easier than my emergency section. Much easier to recover when you don't have a baby to look after.

2muchcrap Mon 27-Jun-16 22:26:32

I had a total hysterectomy two years ago now and it was the best thing I ever did. Recovery was quick, much quicker than c-section. I take HRT and anti histamines to combat side effects which for me is sensitive skin.

Costacoffeeplease Mon 27-Jun-16 22:41:14

I had my op on the Wednesday and discharged Saturday morning. I was mostly in bed for the first two weeks, at four weeks post op I was taking short walks, then built it up gradually over the next few weeks. I think it was at least 12 weeks before I drove but I have additional mobility problems. I don't remember how soon we had sex - maybe 4-6 weeks or so?

Deadnettle Tue 28-Jun-16 16:14:23

I had an abdominal sub total hysterectomy last monday (20th June) so its very fresh in my mind if you have any questions.

I had the op on monday morning and was out on Wednesday. I was up walking around on tuesday evening. It would of been sooner but a painkiller didn't agree with me and I felt dizzy and sick every time I sat up.

I can't tell you yet what the rest of my recovery will be like but so far its been suprising ok!

Threepineapples Tue 28-Jun-16 21:10:54

OP I'm due to have a hysterectomy at the end of July, and I've been on prostap injections to shrink my fibroids for 5 months now. I had my last one 2 weeks ago. My largest fibroid is calcified so hasn't changed much but my other biggie that was on my bowel has reduced a bit which has helped with my symptoms smile

I started add back HRT on month 3 (livial) as I was struggling with the prostap and it made a huge difference, I went from 3 hot flushes an hour (this was when we had that mini heatwave in May grin) to none, in about 5 days!

Just trying to get myself sorted for surgery now, I'm nervous but it's reassuring to hear the previous posters' experiences.

mrsrhodgilbert Wed 29-Jun-16 09:14:49

I'm looking into having a hysterectomy myself. I have breast cancer and this would be to remove some treatment side effects and protect myself against future cancers. I would not be able to take hrt afterwards which is a concern.

I would have the operation by key hole surgery removing uterus, tubes and ovaries. I'm not sure about the cervix and don't know what the implications of that are.

My concerns are how I'd feel afterwards, obviously straight into menopause with no hrt , has anyone done this?

Costacoffeeplease Wed 29-Jun-16 09:21:59

Yes - I haven't taken hrt and apart from a few hot flushes, I'm fine. I'm now 50 (op was nearly 4 years ago)

mrsrhodgilbert Wed 29-Jun-16 11:28:51

Thanks Costa. My mum had this operation in her 30's in the 1970s and was not offered hormone replacement. She was a mess for a few years, bad physical and emotional issues and I remember it clearly. I'm feeling a bit emotionally battered anyway so keen not to make it worse.

MyBeloved Wed 29-Jun-16 13:23:51

Watching thread with interest. Good to read all your experiences and positive thoughts to all those going through this x

Cocolepew Wed 29-Jun-16 13:33:09

I had one a few years ago. I had already had an ablation but it grew back after a couple of years and I ended up with adendomyosis.
I went straight on to hrt for my bones, I can stop it at 51.
I spent a couple of weeks in bed, I didn't have small children to look after, so it was easier.
DH took the first week off to help.
I was in hospital for 2 nights and have had no more problems.
The recovery can be long but the same can be said of any major operation.

crazycatladyonthecorner Wed 29-Jun-16 14:06:50

I had a vaginal hysterectomy 3 weeks ago ( kept ovaries). Excessive bleeding & fibroids. I was driving after a week, and now keep forgetting I actually had surgery. I have had more pain and discomfort with my bowels getting back to normal than the hysterectomy itself......
I feel great. I'm 51.

EveryoneElsesMumSaidYes Wed 29-Jun-16 20:14:57

I had a subtotal abdominal hysterectomy almost two years ago now. I had a vertical incision as my fibroids had caused me to have a umbilical hernia too (which they fixed at the same time)
I didn't have the gonapeptyl injection so can't comment on that. I tooke Esyma for 3 months before hand which didn't shrink my fibroids but stopped my periods which was a godsend.
I have an office job mainly sedentary and was back at work after about 6 weeks. I'd say if you're having the op in October try to stay off work until after Christmas. I felt I went back a bit too so and though physically I was fine I tired really easily and it felt hard going to start off with.
If your not having ovaries removed you won't necessarily go through menopause, but you may get menopause symptoms as you recover whch can be a bit of a shock
My best advise to you would be try to work on your physical fitness from now. recovery can be tough and the fitter and stronger you are the easier you will find it.
Pace yourself as you recover and don't rush things, if your having abdominal surgery you need to be really careful to not cause further injury as you heal. Time off after surgery is usually 6 - 8 weeks but most people say it will take around 12 months to feel back to full strength and I would say that's true IME.
I found this website really helpful, I met some women ther who were having surgery during the same time as me and we we're a great support network for each other and are still friends.

eversomuch Tue 05-Jul-16 21:21:14

Great to hear that so many of you have had smooth recoveries.

My largest fibroid has calcified, so I'm not sure the injections are going to be much help, but the consultant thought it was worth a try. My guess is they won't help and I'll go through 3 months of menapausal symptoms for nothing. I'm keeping my ovaries, so shouldn't need hrt afterwards -- will have to discuss further at my appointment this week.

I am finally working on my physical fitness after several years of little more than running after little ones. I'm nowhere near where I want to be.

Right now, I'm sort of leaning towards postponing the surgery for another 6-12 months, though I don't know if that's possible (or if we'll have an NHS that far into the future). If I wait another year, my youngest will be in Reception and that might help make the recovery smoother.

Don't know for sure, just feeling a bit wobbly right now.

tobee Wed 06-Jul-16 01:21:48

Another who had a sub total for fibroids. I had a hysteroscopy that involved resection of fibroid 6 months before that didn't work (unlucky?) in that my periods remained as bad (if not worse) and I thought I was having a prolapse a week later. Turned out the stupid fibroid was on a stalk and was literally popping out! Delightful and just before Christmas.

The subtotal was brilliant as the op and recovery was very easy and I was pretty much pain free all the time - just twinges. The painkillers were brilliant. My ga involved a spinal as well which meant I recovered from that very quickly. As for being period free it's a revelation. Also because subtotal luckily no hrt. I'm no longer suffering from debilitating and scary anemia symptoms and my mood is much better.

user1471449592 Wed 17-Aug-16 18:25:44

I'm due to have an abdominal hysterectomy (keeping ovaries) in the middle of September. I've had a year of almost constant, very heavy periods and am sick to death of them. I've got fibroids (but they're not huge), was booked in for an ablation earlier in the year but once I was on the table they realised that the shape of my uterus would mean that it wouldn't work.

I can't wait for the periods to stop but am nervous about the recovery. I've lost a bit of weight over the last few months and have been doing regular exercise for about 3 months.

How long are people generally off work for?
How long before back to driving? Do I have to notify my insurance company?

I've never had a major operation before so I'm just definitely a bit anxious and nervous.

thinkingaboutfostering Wed 17-Aug-16 20:05:41

Hi all. Wondered if any of you might be able to help me. I'm 26 have severe heavy unstoppable bleeding at the minute. Severe anaemia as well and in a lot of pain - now prescribed morphine amongst other things! I have a consultant gynaecologist appointment lined up but not for awhile. I'm feel massively bloated all the time and if I lie on my front I can feel something hard. Does this sound like fibroids to you? They want me to try the Mirena coil but I'm not convinced about it. I'm currently taking provera but it appears to be having little to no effect (on max dose).
Does anyone have any suggestions? I'm struggling to do anything at the moment I'm in so much pain.

conkerpods Sat 20-Aug-16 07:43:39

Hi thinkingabout,you poor thing that sounds awful. That's rubbish that you have a long wait to see a gynae. I am waiting too for various gynae apps and it has been ages.
Have your periods always been like this?And did the GP do an examination at all?
I take 1000mg of starflower oil caplets every day of the month without fail and this has reduced my pain considerably (have always suffered). It won't help you today though....
Is there a walk in centre or even A&E if your bleeding is out of control.

conkerpods Sat 20-Aug-16 07:45:30

Also if you start your own thread more people will see it as this one's title is hysterectomy. flowers

thinkingaboutfostering Mon 22-Aug-16 01:02:07

Tbh the GP just seems to want to get me out the door as soon as possible. I haven't had any examinations at all. Bleeding is just continuous sometimes going through pads in less than an hour.
Periods were initially very consistent 26 day cycle. When I was about 19 things started getting more erratic and I'd have long periods of no bleeding and then continuous bleeding. I had ultrasound scans which never showed anything (last scan was 2+ years ago) and was under a gynaecologist for a while. I then moved across the country and as things were more or less under control I let things slide. About 18 months ago things went downhill and I was bleeding pretty much all the time. I saw gynaecologist in January who prescribed provera and put me on waiting lists for a hysteroscopy but that was cancelled due to the doctors strikes. Initially the provera stopped the bleeding but now no amount makes it stop. confused

Footle Mon 22-Aug-16 08:45:52

Thinkingabout, definitely start a new thread with your query - this is someone else's thread and she has different issues. Hope you get some useful replies.

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