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Hysterectomies - it's gotta be done but over here for hand holding PART 3

(1000 Posts)
LackaDAISYcal Thu 27-Mar-14 13:26:36

New Thread...
Over here for the hand holding

One in five women in the uk will have to have a hysterectomy at some point in their lives

Come and join us if you are waiting, pre-op, bleery eyed on the ward or recovering afterwards or just need a bit of advice.

LackaDAISYcal Thu 27-Mar-14 13:31:18

Previous Threads for anyone who wants to catch up...

Part1

Part 2

marymoocow Thu 27-Mar-14 17:09:23

Found yousmile Feeling a lot better today, the cloud has lifted once more. Hopefully not too many more foggy days to come. Try and get some sleep tonight Daisy, at least you'll have some answers tomorrowthanks

marymoocow Thu 27-Mar-14 17:12:01

Oh and I teach KS2 Daisy. They are fantastic (most of the timegrin )

LackaDAISYcal Thu 27-Mar-14 20:35:03

Glad you're feeling a bit better today mary. I love PS children....alll those little personalities developing, and the opinions that they have about the world...

I know what you mean about the fogginess; I'm generally an "it is what it is" kind of person, but this has flummoxed me. I am swinging wildly between "I have no luck in the health department so come on, give me your worst" and "surely I can't be so unlucky as to have yet another major health issue" (in the last ten years...coealiac disease, major depression, gall bladder removed, auto-immune system disorder and now this)

I've also been feeling increasingly grotty; mild to moderate cramping/period type pains generally, with the occasional nasty twinge. The melodramatic side of me is screaming terminal cancer, but the rational side is trying to butt in with possible infection after the D&C. No discharge though, just cramping and feeling grotty. Maybe I am just suddenly aware of every little uterine twinge?

It's going to be a loooooooong night. I've not told anyone about the cramping, or how worried I am (though DH may have guessed by the amount of head chewing off I have been doing today. My poor DC sad )

gingeme Thu 27-Mar-14 21:20:02

Hi ladies. Ive found you. The ladies that had à biopsy before their op how long did they have to wait for results then an op date? Ive got à feeling Im going to have one on Saturday. Though Im still not sure why !!

marymoocow Thu 27-Mar-14 22:04:56

Well I had a biopsy on 17th Feb and haven't had any results, but I'm the sort of person who 'if I haven't heard anything there's nothing to hear' so I haven't enquired. Haven't got my date yet, but did have a guideline of between 5th May and 10th June

marymoocow Thu 27-Mar-14 22:09:26

You really are going through it Daisy. It is hard to talk to 'real' people about it all sometimes. Its not something that is generally talked about. That's why I'm really appreciating this thread.

LackaDAISYcal Thu 27-Mar-14 22:13:44

ginge, they told me back in December that if I hadn't hard anythning within two weeks then all was well...fast forward six weeks and I'm told I need a D&C. At D&C told I would have the results within two weeks...got them four weeks later and told I need a hysterectomy confused

I'm not holding out a lot of confidence that they will even have my CT results tomorrow; after all it was only two days ago!

DH is wondering should I complain? Personally, I haven't the energy!

MrsBigD Thu 27-Mar-14 23:39:01

Ah I forgot how slow everything was in the UK, health system here not much better but every little helps.

Hope you get some sleep lackadaisical and good luck.

marymoocow glad to hear you're feeling a bit better.

I'm with you guys on the talking to 'real' people about it at times as one darling colleague said 'oh you seem to have a lot wrong with you' (mild allergies, sinuses, the obligatory ever present 'female issues', depression etc.). She meant it in the nicest possible sympathetic way, but it had me thinking... well a) I probably overshare grin and b) yeah I have problems that have been going on forever and nothing acutely live threatening, but the chronic pain etc nobody really takes seriously and I was 'head in the sanding' it at times.

But no more! Having the period from hell this month and my abdominal region is feeling like after my C-sections when the morphine started wearing off... aaaaaaaaaaaaaah.

So will call my doc today and on Monday am going to tell my boss that I have 2/5 confirmed. It's bad timing as she'll be away for 2 weeks then as well, and I'll be (hopefully) travelling after the recuperation phase. But I just have had enough after 30+ years of keeping major pharmaceutical companies in business with my monthly expenditure on meds and hot water bottles... and as the pain has gotten worse every month over the last year or so (who's counting) ... *I hereby declare that I have had enough!* (now to hit on my mum for assist with the op cost as it'll leave me at least $7,500 (GBP 4k?) out of pocket. And that's a conservative guess. Trying to have it done on NHS equivalent would have me probably at the age of 85 before I get a turn as mine isn't 'acute'... my a*rse! Sometimes I wish nhs docs would just have 1 of my 'monthlies'. My GP is great but her hands were bound in that respect that's why she referred me to private.

Ok I'm done ranting blush

Hope you all have a restful night, given that it's probably in the middle of the night for most of you!

Thanks for listening thankswine

MrsBigD Fri 28-Mar-14 01:56:34

aaaaah make that closer to $10k out of pocket as, after ages on hold with medicare and private health care, they won't cover the surgeons' and anaesthetics fees because I'm on a reciprocal card... aaaaaaaahhhhhhhhhh. On the upside the private healthfund is at least covering the hospital cost... now for a very very very nice begging email to my mum... how sad is that? blush

flouncymcflouncerson Fri 28-Mar-14 09:27:47

daisy your ct scan should have been the afternoon it was done. The results are usually available within a few mins of being reported unless they need typed as opposed to radiologists using voice recognition to report. So results will be available for your appointment. Good luck and let us know how you get on.

LackaDAISYcal Fri 28-Mar-14 17:00:40

And...breathe!

Good news; CT was normal, no spread into surrounding tissues/organs. So, I am booked in for an LAVH on 14th April. No need to take any lymph nodes and every indication that the cancer was confined to the polyp. But the hysterectomy is recommended due to likely recurrence of cancerous polyps and/or the cancer is totally within the myometrium, which they won't know until the womb has been biopsied afterwards.

The consultant is recommending a BSO as well, given my age and the fact that the hysterectomy will speed up a natural menopause anyway, but is happy to leave my ovaries if I feel strongly that I should keep them. He admits that his view is skewed by the number of women he sees ten, fifteen years after a hysterectomy that are back because of ovarian cancer that would have been prevented of they had had a BSO at the time of their hysterectomy.

So, I have two weeks to make a decision on that one.

Pros and cons needed please!

notapizzaeater Fri 28-Mar-14 17:11:41

My appointment went ok. Doctor took a biopsy - ouch ! Booked for a scan next week, back to see him 11th and he has already told me I will need a full hysterectomy ...... My womb is really high - my growth (which is actually 11x11x8cm ) is pushing it up.

marymoocow Fri 28-Mar-14 17:50:19

Great news Daisysmile I know what I would do in your position, but only you can make that decision.
Notapizzaeater....ouch indeed! It isn't pleasant, I was sore for a couple of days after (although I could just be a wimpblush )

LackaDAISYcal Fri 28-Mar-14 18:49:30

tell me mary; I'm completely flummoxed grin

DH thinks that whilst they're in there they may as well take it all away, but I have reminded him that I'm not a car with dodgy brakes that may need the brake lines done at some point in the future...

Part of me was happy that at least a little bit if what makes me a woman would stay, this has thrown me a curveball in that I now have to think about it.

Off to read back the other threads to see if there is any insight from others...

Glad your biospy went ok, NaPE, if a little ouchy and that the results are good. When do you find out? It's an anxious wait :/ You will be glad to get that mahoosive thing out of you.

Fucking hell MrsBigD $10K??? shock Thank heavens for the NHS; it has its faults, but it really does kick in when it needs to. We have private health care through DH's work and although we considered using it for this, the process has all been so quick and that we don't feel the need. If my hysterectomy was for anything other than cancer though, I would probably have played the private card to speed up the process. We did ask the question today, but my consultant doesn't do private work, so it would mean another referral and repetition of some stuff, and would be no quicker, so it seemed pointless. The cancer centre at the local hospital is very new and state of the art as well so the surroundings are good too.

shewhowines Fri 28-Mar-14 19:34:15

Great news lack . What a relief.

How old are you? They left my ovaries as I was 46. They said they would have taken them if I was over 50. I'm glad in the sense that i would have struggled with the hormone disruption while dealing with the cancer, but now you've worried me a bit about the ovarian cancer!

nota the quicker the better for you then. The ouch sad

mrsd ouch too. That's expensive.

LackaDAISYcal Fri 28-Mar-14 20:01:23

try not to worry too much She, all he does is gynae cancers so his viewpoint will be skewed as he only sees women who had a hysterectomy and then went on to contract ovarian cancer; he isn't seeing the countless thousands more women who had the hysterectomy and are now just fine.

And as far as I can see on t'interweb, the risk of ovarian cancer after hysterectomy vs normal population changes from 1.5% to 1.7% so a minimal change. And I think that figure includes all the women with positive BRCA1/2 gene mutations.

LackaDAISYcal Fri 28-Mar-14 20:01:40

oh, and I'm just 45

notapizzaeater Fri 28-Mar-14 20:05:20

I'm 47 and he's taking it all ...... He thinks the growth is around one of my ovaries so taking the other to make sure it doesn't come back ?

Results and booking in date on the 11th - am private so think it will be quick ...

MrsBigD Fri 28-Mar-14 22:39:45

great new lackadaisical
ouch notapizzaeater

The nhs equivalent would probably pay more if it were cancer related I guess, but then again only on full members. I 'only' have endo, adhesions, and something-myosis. Hence I'm kicking dh to get himself permanent residency so I can piggy back just for any other potential health disasters future might throw at me - though here's sincerely hoping that the op will sort me out for a while.

On the up side... both my mum and my aunt are happy to assist on the financial side so I don't stress on that in addition to stressing about the op smile. They have their mega faults, but seems they also have their good sides ;) Ah, nothing brings a family together like having your innards removed grin. My mum is actually talking to her sister (other aunt) again!

flouncymcflouncerson Fri 28-Mar-14 23:22:41

That's good news daisy. I don't see the point in keeping ovaries. Even with them left in situ they shrivel up and quit working within a few years of the uterus being removed. So effectively useless and won't help with holding back menopause. FWIW I'm only 30. Very young to be having a hysterectomy, but also very young for major prolapse anyway. My first repair is failing and I am in a worse position than prior to surgery.

notapizzaeater Sat 29-Mar-14 00:00:28

Ooh tough call daisy, I wasn't given the option.

Great news the family are helping pay - ouch ! People forget how much stuff costs as it's nhs it must be free. I know I quickly looked to see how much mine was and they are quoting £6k ish - so pleased I have insurance and to think I nearly cancelled it last month.

MrsBigD Sat 29-Mar-14 03:12:40

flouncy sounds like you've been hit with a whammy there. Do you have your date yet?

lacka my ovaries are staying in, unless the doc notices something untoward when she's in there. She said it'll make transition into menopause a bit 'nicer' smile

flouncymcflouncerson Sat 29-Mar-14 08:05:48

MrsB yep quite a whammy! It's a nightmare. I have two children aged 1 and 4 so require huge help with childcare. I'm not allowed to lift more than 1kg for 12 weeks (that's a restriction due to hypermobility). My son weighs about 11 I think so it means I can't be left alone with him sad sad

Surgery likely to be in June. Surgeon wants to wait 6 months from initial surgery due to failure rate before then. It's all a nightmare and very depressing.

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