Date for full hysterectomy with BSO

[BluePancakes]

After seeing the consultant in March, I finally have a date for my hysterectomy with BSO: in 3 weeks' time, I'll be starting the menopause.

So basically, I'm posting to hear anyone's experience of hysterectomy, any tips for the hospital stay (what to take, what to do etc), and anything about the menopause.

I'm 34yo, I have two kids already, so no worried about that side of things. I found out last December I'm BRCA1+ (one of the cancer genes) so am having risk-reducing surgery. They are hoping to do it all keyhole, however as my eldest was born by emergency CS, if there is too much internal scarring, they'll reopen my CS scar, and a two-day hospital stay will turn into a 5-day one.

Thanks in advance.

[thekingfisher]

BluePancakes I had a full hysterectomy in December 2014 after complications due to fibroids and a life threatening bleed. My ovaries were left but cervix went Along with womb. I had an abdominal incision.

I was really really worried about the op and aLso the recovery. The op was straightforward. I had. Morphine self administered pump initially which I really didn't get on with - hated the morphine so took a little while to get my pain sorted. I had 2 nights in hospital - private, then they had me up and out. They were very keen on me walking about and over the next few days althoughnin bed for most of the first 5days had time up and about (gently)

I had the wound stitched with this weird thread with bobbles on the end which was really uncomfortable for the first 5 days but was the. Taken out and felt much more comfortable.

Things to note - take ALL your pain relief on time don't get behind even if you feel fine -

get a big v shaped pillow as it makes sleep and rest so much better

Get some glycerin suppositories- hideous concept but amazing at helping with constipation - also peppermint capsules. The pain relief generally gives you v bad constipation never mind the anaesthetic!

Be prepared to feel very 'down' after the op. Even though my ovaries were left in tact the surgery really messes about with everything and it left me very flat for a few days.

After 2 weeks I was up and about and then was driving by 3 weeks.

It was no where near as bad as some of the horror stories I had heard however things I would note...

My mum was very happily able to move in with me and look after me and my ds who was 10 at the time - my dh worked long hours and long commute so wouldn't have been able to help out as I needed.

I was Ina really good thread at the time with others having a hysterectomy at same time so I will try to find it and link to it.

Please do ask anything else that you'd like. I can't help in terms of HRT stuff but I do know that menopause matters website is a great resource to have a look at and also the website of prof JOhn studland.

[BluePancakes]

Thanks Kingfisher, that's really helpful. I've got a few weeks to prepare myself, but I still don't think I'll be fully prepared, itms (mentally, even if I do have a complete list of what to take with me).

The first week after the op, my DH will take the week off-work; but if I ended up need abdominal surgery, I'm guessing I'll be in hospital most of that time he's home. I don't have any other family nearby, and nobody else would be able to visit for a long time as they all work. My kids are 9yo and 6yo, but are home ed, so we won't be able to do our normal groups and activities for a while.

My worries atm (other than menopause which I really don't know what to expect as it seems so individual):
how soon will I be able to catch the bus? I can cope with not driving (and only have the car alternate weeks anyway), but want to be able to travel by bus asap so my girls can keep doing their usual stuff.
And I'm worried about the constipation from the pain relief. Every time I have been given codeine I've ended up with anal fissures that have gone on for a good 12months, one time needing surgery. I'd rather avoid codeine (and presumably morphine) if I can, but I know I'll need it at least initially. I'll take lactulose with me, though I'd rather be on movicol as lactulose doesn't do much for me. Do you know if there's a medical reason why most people seem to suggest lactulose (eg I'm thinking along the lines of medicines reacting with each other)?

[thekingfisher]

I'm not sure about why lactulose is prescribed rather than movicol. Im guessing you will have a pre op discussion/s with your consultant or nurse and if so I would ask for a meeting with the anaesthetist to discuss pain relief - particularly in light of your historical issues. Lots of the hysterectomy chat was about constipation and shit loads of fruit, peppermint capsules, glcerin suppositories etc really were the best options. There isn't a good morphine alternative for immediate post -op as far as I know - but I did drop the codeine as soon as possible so prob after a week.

I would be surprised if you were kept in 5 days unless you have been advised as such. I had abdominal incision and was out essentially in 2nughts/three days.

I think you would struggle after 1 week dealing with the kids in your own. I was sleeping still for a part of most days then and you shouldn't be spending much time on your feet. As far as our and about in the bus I would say 3 weeks would be the absolute earliest purely from the exertion of it.

I was knackered really up to 8/12 weeks if I did anything too strenuous.

Is it possible to get any paid help in ?

[PollyPerky]

Hi You've been given great advice by kingfisher. As she says there are other forums especially for women having hysterectomies- HysterSisters.

All I'd add is make sure you get the HRT sorted by talking to your consultant, long before the operation. There have been women on this forum and the Menopause Matters forum who appear to have been forgotten by their surgeons when it comes to HRT. In fact one is struggling to get the right treatment something like 18 months on and has at least been referred to a world meno expert.

That's an extreme example but there are other women who are still waiting 3 months or longer to start HRT.

As you won't need progesterone (no uterus) you should be able to have estrogen-only HRT. You need to talk to your dr about this but all the research shows that estrogen-only HRT has little or no risk for breast cancer and even reduces the risk compared with women not using any HRT.

I hope it all goes well.

[BluePancakes]

When I spoke to my consultant back in March we talked about HRT then, and it's definitely on my list of things to get sorted. He was the one to mention it (even though it was on my list), and said it would be ready after surgery (though I didn't clarify whether that meant when in hospital or when I'm going home).

[PoitouSharon]

How did you get on Blue Pancakes? I'm booked in for a hysterectomy this week....

[BluePancakes]

Good luck!

Mine went really really well, thank you. They managed to do it keyhole, so I have 3 small scars on my belly (each scar smaller than 5p piece!), and I only ended up being in hospital the one night as I was fully mobile and not in much pain. I stopped the codeine after the first day, and still took paracetamol and ibuprofen for a week. Today (this is day 8) I took paracetamol this morning, and haven't needed anything since.
The only pain I'm in (tmi warning) is literally just before a bowel movement, I get bad cramps; but once I'm empty again, then I'm fine again. I am taking lactulose to keep everything soft.

DH is working from home next week, so I don't have to do too much, but going by how I feel right now, I'll have no problem catching the bus from the week after.

HRT-wise, I've been given combined oestrogen and progesterone patch. Seems to be working well. I've not had any flushes; I am feeling generally warm, but I'm a warm-person, and recently seems more mild compared to a few weeks ago, and it may just be because we have the heating on in the evenings and the morning. I don't know how long it takes for menopause to kick-in though, as seems to vary with the individual. And I was on depo contraception beforehand, so I've no idea whether that has messed up my hormones, or if I'm just lucky and the first try of HRT was the right dose for me?

So, yes, I'm doing well thanks. My EmCS was horrendous (I was in hospital a week; got an infection; immobile for a fortnight and had a baby to look after somehow) and this in comparison was a breeze. xxx

[PollyPerky]

Really pleased it's gone well for you.

Out of interest why are you using a combined patch and not just oestrogen? (You don't need progesterone if you don't have a uterus or cervix.)

[BluePancakes]

Honestly, I don't know. I was expecting just oestrogen (the consultant I saw in March said I'd just have oestrogen, but in the end it was a different surgeon who did my op), and I hoped to have the gel, but was told that the hospital only had either patches or tablets. I thought it best to take what they offered, so as to delay menopause as much as possible, but was only given a few weeks' worth of patches, so need to make an appt with my GP to get a repeat prescription, and was going to ask him then.

[228agreenend]

Hi, I'm 11 days post op. No one warns you about the stomach cramps/wind Mine were really painful but are okay no. I only had paracetamol post op.

I'm not in any pain, but ache, especially at night.

Take it easy and don't overdo it, especially with young children. I find if I sit,down, I feel,fine. However, if I walk about to much, I feel achey and have to,slow,down.

All the best.

[PollyPerky]

Blue if you feel up to it, I'd ring your consultant's secretary and query this. I'd be amazed if he'd got it wrong, but it seems very odd. Unless there is a specific reason for giving you this.

I also think it's bad that the hospital said they couldn't offer you gel; surely all they needed to do was provide you with a prescription so you / your family could get it for you elsewhere?

Not sure if you've been given a combined patch or one which is sequential (ie progesterone only for later in the month.) if so, you might get some side effects when you get to that part of it. Hope not!

[BluePancakes]

Just a quick update: I saw my GP today, and she didn't know why I was given combined patch either, and things it was a mistake as the letter she received from the hospital just mentioned me being given oestrogen. So I now have the oestrogen only patch (called Evorel, as opposed to Evorel Conti) but she has given me a lower dose (25 micrograms/day rather than 50) and said I could go back and up the dosage if needed. She also said that the progesterone wouldn't have harmed me at all, so I could potentially stay on it if I wanted to, but there's no point taking hormones unnecessarily - which I agree with.

[PollyPerky]

Glad you are sorted but isn't it shocking that mistakes on something so simple are being made- by a consultant!

That dose of oestrogen is very low. Most women who are post meno in their late 50s and 60s are on a 37 or 50mcg patch. You might find more support on Menopause Matters forum because there are several women who've had your operation talking about it there. One is being treated by someone who was directly involved / very snr in the NICE guidelines.

[PoitouSharon]

I am two days post op and whilst everything went well, the trapped wind is agonising! I've tried peppermint tea, peppermint capsules, lots of water, exercises - all to no avail.

I had a full hysterectomy with removal of the cervix due to fibroids and endometriosis). I have retained my ovaries so no hrt necessary. I have a nice long cut to show for it as the fibroid was so large.

I have to stay in again tonight but hope to be home tomorrow with pain under control.

Good luck, my hyster-sisters.....