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.

Hi ImNot.

Sorry you are having such a time of it. My diagnosis was a combo of endometriosis, fibroids and cysts, and was thankfully offered a total hysterectomy after many years of heavy bleeding and a few emergency hospital admissions due to the severe pelvic pain.

Your first hurdle is obviously the diagnosis which may well guide you as to whether you should retain your ovaries. If they are causing the pain then thats pretty fundamental but it may be less clear cut.

Understand the diagnosis and proposed treatment first.

Everyone is different but I did want to say that while a hysterectomy is a big op and the recovery period is inconvenient for many, it is absolutely nothing compared to the misery and dread of being ruled by your awful menstrual cycle,. I worried that I would feel strange without my bits, but I feel normal apart from those mildly annoying hot flushes now and again, and have so much more energy now that I am no longer anaemic/in pain/worn down.

But first things first. Glad you have escalated and you are being investigated, good luck and keep us posted. X

Thanks for your story, I've already had a scan which showed a 20mm uterine lining. It also showed my uterus to be 16cm long (bulky?) just after my period stopped (and started again three days later). Hence the referral. No sign of fibroids or anything else. But the scan was Easter Sunday and the NHS had done nothing since, I was only offered a referral last week. They said that could take 4 months.

DH just said stuff it, go private. We call it Bernard, and I think Bernard and I need a quickie divorce.

I can't carry on like this. Work must think I'm malingering. Got an appointment next to my office. I'm very lucky that I can do this privately. The NHS seems pushed to the limit at the moment 😢

I have to repeat this, I am TOTALLY terrified of ovulation. All I can do is lie in bed and swallow painkillers, vomit and eat plain rice. The GP did suggest a fast track referral for cancer but I'm going to go with my gut and go private. The NHS can swing in if it's needed.

Can anyone tell me what diagnosis aside from US involved for them? Did you get an MRI or a biopsy? Or was it just a US and get it out.

I have no attachment to my poor Bernard, I've been lucky enough to have two children, one at 40 years old. His work here is done.

I had 2 scans and a couple of internal examinations. I too had a bulky uterus and many fibroids.

I too felt like you, my uterus had done it's job and produced 2 children (now 17 & 14) and it needed to go.

Glad you've been checked out BG, it sounds as if you need to slow down a little. I expect stitches will be tightening up too.

Hello ImNot, I'm currently waiting for my op and was worried about my consultation, but the consultant couldn't have been kinder and was easy to talk to.
He advised me to have my ovaries removed as they would be failing in the next few years anyway, if ovulation is an issue for you then I think it's worth considering and Im sure your consultant will be happy to advise on the best way forwards for you.

Being very rude again and not properly read personals sorry! I hope everyone is doing ok though?

Just to say my ct scan was supposed to be next week, but they've brought it forward to tomorrow because I'm a 'special case' (trying not to read into that too much)
Won't know results or plan until next Thursday probably as the experts in this particular sarcoma are in another part of the country.
Wish me luck!

Best of luck GreyBoots. It's good that they aren't keeping you hanging around. Soon you will have answers that will help you move forward to the next stage. I really feel for you. It must be a scary time.

Thinking of you today Greyboot.

...and me, Greyboot ....

Hope all goes well greyboot [Flowers]

I've half heartedly agreed to an endometrial ablation and the Mirena. Surgeon says if no improvement he will take it all out. The Mirena can come out with just a days notice if I have any side effects. I'm terrified of it but maybe it will work? Must stay away from Google.

I had an EMCS in 2011 (babies heart stopped so it was a proper rip open and get baby out now business - it really messed up my insides), and I have major adhesions on my bowel, bladder and liver. After a very comprehensive scan he said opening me up again would be risky (specialist surgical referral) and looked like a long recovery. Not the 6 or 8 weeks and back to work I thought it would be. More like 12 weeks.

I'm currently working on an £300k 18 month contract (I run a specialist law firm and am consulting on a big job), he said try and get through this contract and then we'll go from there. Money eh? I guess I should count my blessings.

I kind of felt fobbed off at first, but after seeing the 3D scan and him pointing out the mess I can see his point. I earn a good wage, my firms contract would be terminated if I took more than two months off. I'm going to take my chances and see what happens. My client (a bloke, they don't like to talk about uteruses) said his wife did similar and got two years of relative relief before having a full hysterectomy.

Good luck Greyboot, I hope all goes well for you

I had an ablation last September but it didn't work for me, I had fibroids though and apparently they rarely work with fibroids.

It may work for you though. They do like to go through all other options before they offer you a hysterectomy as a final resort.

Imnot

Good you have a clearer understanding and better view of the state of your bits now!

Apologies in advance if this is intrusive but did the consultant say what exactly was causing pain specifically on ovulation? Just curious as it sounds like your ovaries are the least of your problems. 🤔

But it also sounds like there is a clear surgical issue (adhesions) and nothing more sinister either, which must be a relief for you.

Hysterectomies are rarely convenient and it does seem positively sensible to have a lower level intervention first, to see if you can avoid surgery given your medical history. Sounds like a plan that will accommodate your work requirements.

Hi What, from what he saw from the previous scans he just pointed out extensive scarring. He said that if I wanted to push for hysterectomy he'd do it. But he felt that the 'mess made' in the initial EMCS seemed to be the main problem, and more surgery is no guarantee.

He said one of my ovaries (right side) apparently is fine and in a normal position. But the left side one had twisted and the tube was adhered to my bowel pulling it upwards and could explain the horrible pain I experienced down my left leg in particular. He said the pain from that would be enough to cause major discomfort throughout the month but especially during hormonal swings.

I was a bit stroppy at first (I'm sick of bleeding and pain) so that's when he said come on, let's get a really good 3D scan of what's in there. He'd been going on my previous NHS scan reports.

He showed me all the adhesions (frankly loads) and said he'd be surprised that I wasn't in pain. He said it'd be a case of shaving various internal organs off my bowel, bladder, liver and stomach wall to sort it out. When he showed me the screen I was like 'bloody heck that's a mess'. And I can't normally see a 12 week baby on a scan.

So he said he can't promise to get rid of the pain, but he said if he could trade off the terrible bleeding would I be willing to try that first?

TBH he said he'd probably see me back within two years for a full hysterectomy but it was worth a shot at easing the symptoms first. I explained my work situation to him and explained I'm having six months off from October next year.

He said that an ablation could manage the bleeding and put in a Mirena to see if it helps with ovulation. He's happy to take it out any time and give me an injection to put me into temporary menopause if I want. He just thought it was worth a go. I still resisted but I did do well on hormonal birth control in my 20s and 30s and he promised that he'd take the Mirena out If i had any trouble at all.

He said he felt that the main problem was the hormonal swing during ovulation causing swelling and irritation to my whole pelvic area. Apparently that can be worse than a period for some women.

I'm willing to try this as I trusted him to do as he said. He promised me a hysterectomy if this doesn't work. I'm feeling a little less fobbed off now, I just wanted a hysterectomy but he's promised one if I'm still in pain after the ablation.

I'll get my ablation within the next two weeks. He insisted that I take two weeks off and rest. I have a long history of ignoring medical advice, I tiled the kitchen two weeks after my second c section. I have a history of being an idiot. I'm going to do it right this time.

Can I jump in too? After trying transxemic acid for heavy periods, I had the mirena in march, bled until it fell out in May, and then I came on after the bleeding had settled and I've been bleeding since. Since March, I've not bled for a fortnight all told. In the last two weeks I've taken provera and am still taking transemic acid, still bleeding. I had a scan at the beginning of the year which said I had a couple of small fibroids. And my uterine line was 13mm, which I queried as I on my period and had been for a week at that point. They said that was okay.

I'm now waiting to see a gynaecologist in August. My bmi is very high though, so I don't think they will offer a hysterectomy. I have ballooned since a) developing stenosis in my spine and b) even more so on the bastard mirena.

So I am anxious about the future and feeling rather sorry for my fat, constantly leaking self.

Imnot, I understand completely how you are feeling. I was initially told I'd be having a hysterectomy, the consultant thought a resection would be better and it sadly didn't work, so I'm now on the list for a hysterectomy. Chances are the ablation and coil will work for you, I was also offered an ablation but I declined, one failed procedure was enough! I hope your outcome is successful and you are soon up and running again.

Fretyet, what an awful time for you. I'm sure that they will offer you some help though, I know they must regularly operate on patients with a high bmi. Fingers crossed all goes well in August for you.

I think I will ask for an ablation first, I think they are more likely to agree to that than a hysterectomy, but I'm not sure if it will work with having fibroids. I am utterly sick of it though.

Fret my consultant said ablation can work if you have fibroids under 4cm inside the womb. I'm not convinced but I think there is a path we have to go down to get what we really want. I thought as I was going private I could just walk on in and say take it all out, apparently not.

Hugs, I'm not looking forward to the bastard Mirena either, but they are putting it in immediately after the ablation and at least I'll be under GA. They are going to do a biopsy at the same time so it's a three for one. I'm trying to be glass half full about it. But I'm a bleeding wreck. I just want it gone. I'm so sick of pain and bleeding.

It's worth a go just so I can say 'I've tried everything'.

I had success with the Mirena. The first one worked for 4 years (minimal spotting once a month) but I kept getting thrush every month which I thought was caused by the Mirena. Split with my partner and had it taken out, that was after they found it as it had gone AWOL. After nine months of heavy bleeding I decided to have another one.

I then met my current partner and haven't any cases of thrush with him! So can only conclude my ex was re-infecting me with thrush.

The Mirena stopped working last May as in I was just constantly bleeding - it never stopped. Hence the hysterectomy!

I'mnot, that might depend on which sort it is, I think mine are submucosal. Not sure of size, maybe just small enough from last scan. I guess I'm lucky in that I don't suffer from massive cramping, just a bit of a gnawing ache. It's been getting a little worse over the last few days though.

BG - they work really well for some women, I hope it works for you. My dd doesn't have any periods with hers. Neither did my neighbour who had it for heavy periods. Me? Carrie-esque.

ImNot My right ovary was like your left one, and the pain was indescribable - I also suffered IBS symptoms and bloating due to the effect on my bowel. I hope the ablation will separate them successfully for you.

Robots When my pathology came through, the adenomyosis was the surprise whereas the fibroids and endo were the known quantity. The endo should have been removed during the op and I've been told I am fine to have HRT but I still haven't taken it up because I'm paranoid about the endo returning if there are any 'scraps' left to regrow. Probably silly on my part.

Hope everyone else is well and thinking of you Greyboot as you wait for your results.

I have a hot date with Bernard and a microwave, it's the 13th July. It just happens to be the day my lovely au pair leaves so I'm not going to be able to take her to the airport.

I'm feeling sad that I'll not be able to take her there and say goodbye properly. But she is so sweet and said she'll get the bus. I was like no way, you're going in a taxi at the very least.

Damn Bernard, he always spoils everything.

To everyone else suffering I wish you all the best. Fret I think it's worth a go just to get you a step closer to what you want/need.

Arch maybe we have twin ovaries that can be sent to hell together 😉

imnot thanks for explaining and sorry for late reply. Your consultant sounds a good 'un. Good luck and best wishes for the 13th.
fretye I despair at what so many women have to put up with, I hope there is lasting relief ahead for you. Small fibroids can be worse than large ones.

I think I was only taken seriously after two emergency admissions, peritonitis and a big internal bleed. It should not have to come to that. I do hope they can refine the Mirena to be a palatable and effective first step before surgery.

Big wave to Arch, Fennel and BG and my positive thoughts for greyboot

Afternoon all. I haven't been posting for a while but I just wanted to say that having my Hysterectomy with overies removed at the end of April was the best thing I have ever done. No more pain and flooding.
HRT now working a treat so that's all good. I was worried about my sex life after the operation but honestly I haven't seen a difference.
However, I still can't drive with out pain and am seeing a gyne physio to address some problems with my pelvic floor.
My problem now is that my Dr won't renew my sick note, he says that 8 weeks is plenty of time to have off of work. I live an hours drive away from work and I work in a commercial plant nursery so have lots of physical work lifting, carrying etc. The Dr says that my consultant will have to write any further sick notes.
I hope that everyone is healing well.

I second that having a hysterectomy was the best thing I have ever done. Six months down the line, I feel normal and healthy for the first time in about 10 years. A period-free summer is marvellous!

Hysteria that's an awful attitude from your GP! Most guidelines say up to three months off work is usual; more if the work is physical. I hope you can get a further note from your consultant.