Hysterectomy.

[Beanfield]

Hurrah and Hallelujah. My uterus has been given an eviction notice!

30 years of being a complete bitch. Let me down twice (miscarriage and ectopic). Did what it should do twice (2 grown up DDs). Never officially diagnosed with anything but suggestions have been PCOS and endometriosis. 30 solid years of hideous periods. 30 years of being fobbed off by assorted GPs who told me it was normal to faint, vomit, incapacitate and take over my life for one out of every three or four weeks.
It’s got to the point where my cycles are just 18-20 days long, I bleed huge amounts for 5 days (emptying cup every 2 hours), overflowing, clots. Light bleeding on and off for a further 4 days. Bleeding on and off randomly mid-cycle. Puking and dizzy. Period diarrhoea, excruciating, labour style pain. Another 3 days of pain while i ovulate plus bleeding then too.
Tried everything. Mirena - I bled for 8 months then it fell out. Painfully. Pill - unhinged. Drugs - I’m allergic to the good ones and the others don’t work so well. Herbs, flowers, tea, homeopathy, diet - all bollox.

Finally saw a Dr who actually listened and agreed to whip the bugger out. Not sure how yet as apparently it's ‘bulky’ (like the rest of me) so need a scan to see how big it is. Also waiting on smear results and endometrial biopsy (which hurt like a bastard and is still hurting 4 days later).

Cliche, you'll be fine. Keyhole or abdominal?

Post. I hope you get sorted soon.

Cliche. Top tip for recovery - take regular painkillers and do very very little for as long as you can.
Recovery has been so quick and easy for me. I feel very lucky I’ve had no complications at all.

Ooh sounds promising. They are aiming for vaginal. However they haven't checked im ok for this and they are just assuming i am. He was supposed to examine me last time i was there before he booked it. But i scared him a little by shouting and kicking off til they agreed to the op.( ive been waiting 3 years in agony , im not normally aggressive )
I personally think due to swelling and tilted uterus vaginal may not be sucessful. But i live in hope.

I'm home at last and it's all fine. Just taking paracetamol and ibuprofen for pain, which is now completely under control. I've been sent home with an injection of blood thinner stuff to stab into my tummy, to avoid dvt that I'm not especially looking forward to administering, plus laxatives to get things moving (so far just wind). It's nice to be out of hospital with my family around me.

Oh that’s good going Fanny, was that just three nights in then? You sound like you’re doing really well, which is good to hear. Take it nice and easy though.

Yes, three nights in hospital. It was meant to be two, but I really wasn't well enough to come home until yesterday.

I'm on day 4 now and amazingly much better. Swelly tummy going down nicely, can get in and out of bed without feeling like I might rip something inside, don't need more than paracetamol and ibuprofen occasionally. I've even 'opened my bowels' this morning as they put it in hospital, which was trouble-free, though I had been dreading it, thanks to an obsessively high-fibre diet and loads of water- Hooray! I can do the stairs, slowly, so plan to take up a regal position on the sofa in due course.

That sounds very positive Fanny, glad you’re doing well. Consultant appointment arrived for end of next month, scan is the middle of the month. I’m pleased with that, quicker than I expected.

Can I ask how long you all waited on the list? I know it will vary area to area but was wondering.

Glad you are home Fanny and feeling ok. I am dreading having to stay in hospital. Glad things moved ok in the toilet department and your pain is under control.

Post I have been on the list since the end of Feb 2018......and still waiting. I phoned before Christmas to ask how much longer and they said I should hear about a pre op in the new year. TBF they didn’t specify how soon into the new year!

Bean was work ok?

Cliche I too had to insist on hysterectomy after several failed medication options they insisted would solve my problems. I wonder how many women continue suffering because they meekly accept the gynaecologist dismissing them.

Oh bloody hell, so mine likely to be just before or in the middle of DS’s GCSEs next year. I shall kick off if Consultant suggest anything other than a hysterectomy after all that faffing with embolisation which was extremely painful, much worse than my casearians.

The wait in some parts of England is only 3-4 months. I just live in the wrong place

Thankfully my wait was only 3 months. Would it be worth contacting PALS to ask them about their waiting times? A year is quite ridiculous.

Work was fine. I have a very understanding and supportive team and manager. It makes such a huge difference.

Just looked at hospital data and it says from GP to treatment 21 weeks. That really is awful you have to wait a year.

Just had an epiphany, I think the pain in inner thigh that I had put down to menopausal arthritis or a screwed hip could be due to fibroid.

From first finding out I had big fibroids to having a hysterectomy it took 18 months. I went through a few medical hoops. In hindsight I am kicking myself for not pushing harder for a hysterectomy from the start, but nobody gave me the wrong advice at any stage, given the information available. It did take a long time for each appointment to come around once they knew it wasn't cancer, however, so I went from stage to stage quite slowly.

I described my continuous bleeding etc but I don't think anyone really understood how awful it was and I didn't know what to compare it to, so maybe didn't make it clear enough. Also they were rightly reluctant to go all guns blazing, risking prolapse, menopause, other negatives of a major op as I was only 43 at the start. 45 now.

Having had the op and spoken to the people who did it, I suspect my fibroid wasn't sticking out in front as much as it 'should' have been for it's size (tilted uterus and I now know it had largely grown backwards into me). They said you can only see so much from a scan.

When I eventually had my date, (i had three to choose from, and I picked a slightly later one to suit family and work) it was then postponed twice, once because the surgeon had to go away, and once because I had to, unexpectedly.

All in all, I'm glad it's done and I wish it had happened quicker, but I don't have any cause for complaint.

I’ve been having treatment for fibroids since April 2014, they have made me try every ineffective treatment under the sun. They told me when they -finally-agreed to the hysterectomy (because I was in floods of tears saying I can go on any more and wanted to rip it out myself) that the waiting list was 12 months as cancer patients get priority. Naturally.

In 2016 I was actually told “we don’t do hysterectomies anymore for routine problems”. It’s all down to funding cuts.

from GP to treatment 21 weeks treatment doesn’t necessarily mean hysterectomy so, in theory, because they have tried other treatment/solutions, I have had treatment within the period-I think it’s 26 weeks for our area. I feel so down about it all at the moment

I thought probably it was unlikely that the 21 weeks meant till Surgery. I suspect they might well class an MRI as treatment. So sorry you’re feeling so down Stripes

Mine was diagnosed years ago, my GP was spectacularly unworried and despite the sonographer say8ng it was a large fibroid (6cm at that point) she shrugged it off and I was too busy dealing with children and sick children to worry at that point. Over the next few years things gradually got worse and I went back and saw a new GP, who was also not concerned and tried to say it was just peri and offered HRT. Insisted in scan and the first thing the sonographer said was ‘ bet you’re good friends with the toilet ‘, the relief was huge as I had wondered whether my need to wee was psychological .

Fibroid was then 9cm at scan in Dec 17, saw Consultant Feb 18, then MRI and interventional radiologist in May 18, embolisation in August with MRI booked for 6 months after ie. Next month and now Consultant appt 2 weeks after. I think so far I have fared well. I was offered hysterectomy but Consultant strongly recommended the embolisation as felt I would be a good candidate. I think as embolisation at a different hospital i’m now under a different Consultant who is supposed to be lovely and specialises in minimally invasive surgery.

My hope is my fibroid might have shrunk a little so there are now more options. I think as with social services and there,dearly there are key phrases within gynaecology that they respond too. In this case significantly impacting on quality of life, I said this and I noticed SHO seized onto it and put it in her notes straight away and let me dictate some of what she wrote bless her, So I will keep repeating this and over and over until they give me a hysterectomy. I don’t think I’m going to meet any resistance but I’m ready for it.

I think it’s fair to say any woman on a hysterectomy thread has had more than a few years of suffering before a (mostly male) gynaecologist starts offering any sort of treatment. Mine knows I have to miss work and am unable to leave the house due to pain, that makes me retch, and flooding but my op is still “routine” .

Hopefully the embolisation has shrunk them post and when you see the consultant next month they will agree your hysterectomy.

I will keep getting excited when I see the postman........one day soon that letter is going to come

Well, I’m in the book for the 18th Feb. Pre-op appt next week. Am crapping myself now but also delighted it’s so soon. Lots to get organised between now and then though!

Oh wow! Great news Macaroon but yes, I’m sure the prospect is terrifying now that you have a date!

Fantastic Macaroon! Can imagine the oh shit aspect but will be great to have it over and done with.

The bit that’s offsetting the terror is that our NHS trust has some sort of deal with the swanky local private hospital to help keep the waiting list down so I’m going there, rather than our big nhs hospital. Guaranteed room to myself!! That was the thing I was dreading, being in a ward, I’m quite an introvert who needs peace and quiet.

Guaranteed room to myself!! That was the thing I was dreading, being in a ward, I’m quite an introvert who needs peace and quiet.

Now I’m doubly envious! The prospect of being on a ward almost makes me not want to get it done.

Nice one Macaroon. Not long to go.
I was seen in the private bit of the local hospital (some outsourcing thing) and from then admitted and stayed there. A room of my own was wonderful.

I’ve been back at work a week or so and my god I need the phased return. I am knackered.

I felt so well beforehand. No aches, no tiredness. And a few days back and I’m so tired and achy. So I’m making the most of my half and 3/4 shifts for a few weeks

Hi Everyone

My gyneacologist has just agreed to do a hysterectomy and is pushing it through as urgent so will hopefully be march/April time. Tbh I'm so fed up of being in pain, passing out and feeling generally shit that I'm not worried about the op itself but I am worried about the recovery. I have 3 children under 4 and my partner is self employed so won't be able to take to much time off.

Bean sorry to hear work has been so knackering. Glad you are able to do a phased return and don’t have to do your full shifts for a while.

smiling sorry you suffer so much, hopefully it won’t be too long before you get a date. if you read back lots of women have shared their post op experiences. I think your partner needs to do as much as possible now and you need to cut your expenditure as much as possible so you have a bit put aside to tide you over, he is not going to be able to leave you with 3 toddlers to look after after just a day or two. Do you have any family that would be able to move in and take over if he couldn’t have much time off?