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.

Sorry, meant to start new thread. Sorry for hijacking this one!!!!

Welcome Fennel and Val :)

Val, it's not a hijack in the slightest. I think a few of us have had adhesions. Mine were found during my hysterectomy, nothing like yours though.

I don't know how different it would have been had I not had them, but I do know that my near permanent bowel pain that the gastro consultant said was ibs has now gone. That's a bonus I wasn't expecting.

Does your history of dvt affect whether you can have hrt? Some of us are on it, some aren't. So far no one who isn't have reported a horrid time with menopause.

I'm at 4 weeks now. I only get twinges, unless I do too much. I'm working very part time. I do get really tired but that's about it. In many ways I feel weller than I have done from since I can remember.

Hi Fennel and Val

I had adhesions - my left ovary was stuck to my bowel and the right one to my womb. Like Robots, I am an IBS sufferer, but my symptoms have all but gone since my operation. I also had fibroids and adenomyosis, so everything needed to come out. My recovery has gone fairly well - it's nearly six months since my op. I get the odd twinge and ache, but nothing unmanageable. I'm no longer on any pain relief, and I'm not on HRT yet (I'm 42, so went straight from zero to surgical meno). I didn't have any non-gynae conditions to factor into my decision.

Based on my experience so far, I thoroughly recommend the operation - it has changed my life from being in chronic pain to being 'normal' again. Not having periods anymore is amazing!

Thanks so much for your reassuring replies. It's great to hear that it was a success for you. I had ablation last year so periods not too heavy, (even though I'm on Warfarin) but pain is my main reason for considering hysterectomy. I'm just getting over pleurisy and lung infection,(have lung weakness due to previous P .E and diaphragm paralysis) so find it hard to think of facing surgery(again), but when pain kicks in I'm ready to go for it!! I have been told hrt won't be an option, due to dvt s so hopefully menopause symptoms wouldn't be too bad. A lot to mull over ,but great to hear others positive experiences.😊

I have adhesions too, my uterus is attached to my bladder, but my gynae seemed totally unbothered by it. Im not going straight on hrt after my ovaries are removed and hoping not to as strokes run in my family and I already have high blood pressure.
In your shoes Val if there's a chance the surgery will help with your pain issues then I'd probably go for it if the surgeon is confident that the risks can be managed. It has to be how you feel about it individually though. I asked for my surgeons recommendation on ovary removal as I couldn't decide, it was a relief to let someone else give a strong opinion on what they would do.

It really helps to read the positive stories of others, and even the not so positive aspects of some experiences,they they all help us to prepare.

Hi, sorry, this is a long one....

I've been reading through this support thread with interest, and hope you don't mind me joining?

I hope all of you post op are recovering well and those awaiting dates get them soon.

I have always had horrible heavy periods since they started when I was 9, but now they've extended with 5 days of spotting and flooding, following bm's, before the rushing, flooding mess occurs.

I had scans in January and discovered that I fibroids, I was overjoyed, I know, why was I overjoyed?? But back in my 20's I had my periods investigated and they could find no root cause, - the only thing commented on following a laparoscopy back then was that my ovaries were enlarged, when quizzed about this comment I was informed that they were fuller than they would expect, indicating that I would probably have a delayed menopause, yay! So to come away with a reason for the changes was a refreshing change.

I spoke with my dr and he suggested I get the fibroids removed, I queried what the chances were that they would grow back, as I produce high levels of oestrogen, quite high was his guess, so I queried a hysterectomy - I'm nearly 40, we have 4 children and my husband had a vasectomy following the birth of our 4th, my uterus has done its job, and if the conclusion of the laparoscopy in my 20's is accurate, I may not heading into menopause for another decade, he agreed that it was an option and left me to make an appointment with a gynecologist, I'm not in the UK, I have to make all the specialist appointments, once armed with a letter from my GP. I had an appointment with the consultant last week, and from the position of the fibroids, intramural, he doesn't think that they are causing the change in bleeding - the pain, yes, but not the actual bleeding, and the tiredness and rundown feeling is more likely to be hormonal, so, what I'm wondering, if I have a hysterectomy and they leave my ovaries, no reason for them not to, am I still going to suffer from the PMS symptoms, and if I do, will they be easier to handle because I won't be bleeding and in pain??

Hi woulda and welcome.

I had my ovaries removed, so I'm not the best person to answer about PMS symptoms post-op (I'm sure someone else will be able to help).

My PMS used to be quite bad, and I always suffered flu-like symptoms around ovulation (for some reason) as well as mood swings etc. All that has gone now, but I am contending with menopausal symptoms following the loss of my ovaries. In my case the menopause is much more manageable than anything pre-op, but I know people's experience of menopause can vary immensely, so it's worth being aware (if you were to have your ovaries removed) that you might swap one set of hormonal symptoms for another.

Has your consultant suggested any other options for addressing the hormonal issue, e.g. HRT?

Thanks for your reply Arch - when I met with the consultant he gave me the options of mini pill/mirena, which he said may help with the bleeding, but probably not the pain, or a hysterectomy, but that may not address the hormonal issues.

To be honest, I've always been adverse to taking hormone based contraceptives - the pill made me bleed non stop, with the added bonus of headaches, and one depo-provera injection left me bleeding non stop for 9 months, and put my libido through the floor, so whilst my body isn't great at regulating it's own hormone production, it really kicks off when artificial ones are introduced!

I think some of the issues on gathering information is one, I think of questions once I've left the appointment, and two, the language barrier means that I can't ask the questions as intricately as I may in English. The consultant was great when I saw him and spent a long time gathering information and explaining the options available to me, I guess I'm just a little bit, oh, there was a reason, but the solution may not solve all the issues - but maybe the first step is to have the hysterectomy and then see how my body is feeling once that drain has gone.

Sorry for the long waffley message!

I avoided the Mirena because I hadn't heard good things about it (it disagreed violently with my sister, who only tried it for contraception). If you're not great with artificial hormones, that would seem a reason to keep your ovaries if you can, then you wouldn't need immediate HRT. You could always have them removed at a later date if the hysterectomy on its own wasn't enough. Surgeons can make an on-the-spot decision (with your prior consent) to remove ovaries if they see signs of damage/ill health once they get inside.

It must be very difficult discussing the op with a language barrier - I struggled to take everything in without one! I made a list of questions after the initial appointment and booked another one to discuss them a couple of weeks later, which helped.

Thank you arch, I'll get my questions down pat, practice what responses I may get and then try to have appropriate follow up questions to hand!

Hello everyone, sorry I'm going to rude because I haven't read any of the new posts!
I've come for advice... I'm three weeks post op now and started bleeding bright red blood yesterday. I've past two largeish clots this afternoon and the bleeding has slowed.
Just wondered if anyone had this? I don't feel ill or anything. Thanks x

I bled for about 4 weeks post op - it was brown or pink discharge with a few small clots - it would suddenly get heavier and redder if I exerted myself too much. I stopped for weeks but then had another bleed when I went back to work - I saw the nurse practitioner at my GP surgery because I was worried, she did an internal exam and said everything was fine, and it cleared up quickly after that. I would say, get it checked out if it's worrying you. It might be a sign that you need to rest more.

Hi greyboot

Usual disclaimer that I am not an expert but did a lot of googling recently when I was bleeding at around the same time.
From what I read week 3-4 is peak internal healing, with spotting expected, and that blood clots are probably from the suture wounds and are now 'escaping'. You are being more active now presumably and I guess this gets stuff moving . I stopped bleeding around week 4-5.

The consensus seems to be this bleeding is normal but anything looking heavier or like a normal period should be checked out?

Hopefully other posters will agree and reassure. It might also be a timely reminder not to overdo it.

I have just completed week 5 and am having a very uncomfortable day today, I suspect because I have been too busy and stayed on my feet too much earlier in the week. Lots of rushing about after a poorly cat. Nothing else to report apart from the fact that my path report turned up eventually. All clear, but the uterus and fibroids weighed 1.2kg!. So just working out how much lovely cheese I can eat now I am 'in credit' with my bathroom scales 😀

Hope all well with you otherwise.

Hello everyone. Wishing good recoveries to many of you. I've another 2 months to wait. Totally exhausted today - I often worry there's other reasons I'm so low energy and it might not resolved itself with the fibroids out.
My previous op fitness idea is a bit stymied. Bad knees and a bit of spd from my exercising mean I'm on a break. Shame I think it would be good to be fitter pre-op. And slimmer...
I did buy a pelvic floor toner though. Not the hugely expensive kegel8 but similar from the trusty lovehoney site. Wierd but good and I'm doing more general kegels and abdominal holds. So at least that's going on.

Wow on the 1.2kg weight of uterus plus fibroids

Thanks for your reassurances. It's more spotting than proper bleeding now thankfully.
I have been walking more this week, but also had a very traumatic day Thursday when we sadly had to put our dog to sleep 😢
It's a reminder that I am only 3 weeks post op.
Wow to 1.2kgs!

Wow, 1.2kg of weight gone! That will do me. Along with that and rubbish hospital food I hope I'll walk out of hospital a slimmer person lol!

If I ever bloomin get there!

But.....Harry Potter this coming weekend woo hoo!! Sat pm and then the evening! Can't wait!

I had increased bleeding at the 3.5 week mark with some small clots, it settled down again quickly.
I way over did things yesterday, so it's a couch day today. Feel rather sorry for dh, I think the novelty of having to do all of the heavy work is is wearing off.

Weight is a funny thing post op. When I got home from the hospital I'd lost loads. A few days later I weighed more than I ever do. I'm a bit below my presurgery weight now despite lots of arse sitting.

Gig, you must feel much better without that in there!

Excellent BG :) you get to go and have fun!!!

Greyboot, I'm really sorry about your dog. That's awful.

I'm sorry to hear about your dog, Greyboot .

I think if your recovery is generally going well, it's easy to forget what a major op it is, and slip into doing something you shouldn't. In my first week back at work, I merrily started wheeling a heavy filing cabinet across the office, but realised just in time it wasn't a good idea.

BG - enjoy your theatre trip!

You still waiting for an op appointment bg2015?

greyboot
So, so sorry about your dog, the saddest of times. But lots of happy memories I am sure. You will be so sad though. Its always hard when it comes to letting them go.

(Yes it was a bit of a shock re fibroids - I am hopeful I will work a bit better without them getting in the way.)

Greyboot so sorry about your dog.

Last - yes I'm still waiting- very long story, messed about and had to get PALs involved. Hoping that I hear something soon I've been waiting since the beginning of February. They have until the end of June before they breach the waiting times.

Sorry BG2015 that must be very frustrating.

How do you all go about planning things? I feel like my op is this big blank after which just have no idea what happens. It doesn't help that my work ends in June and then the op is in july. There's just a 3 months blank in my mental diary. It's starting to fill with potential projects but they are all maybes I guess until I get to the other side of this.

I would stay open-minded about your recovery period, lasttime - be prepared with sedentary pastimes in mind as well as more active/creative things. It's the perfect opportunity to catch up on your reading or get through some box sets if you're not up to doing anything else. I hardly moved from the sofa for the first ten days, but after that I was up and about more.

We are going to London on Saturday for 2 days, then I'm going to see Take That on Thursday 1st June and after that we have absolutely nothing planned.

We'd like to book a week in Cornwall or somewhere for late August but can't do anything until I have a date for my operation. Life is now on hold.