Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

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

999 replies

LackaDAISYcal · 27/03/2014 13:26

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.

OP posts:
notapizzaeater · 25/04/2014 19:48

Soo pleased Daisy x

gingeme · 25/04/2014 19:50

Grin Grin Grin Grin Grin Grin Daisy
Scarlett how long is a piece of string Hmm

Original poster
LackaDAISYcal · 25/04/2014 20:17

scarlett it seems to vary greatly depending where in the country you are...

from my POV, from seeing the gynae consultant for a second lot of irregular bleeding, referral to hysteroscopy, follow up D&C and then hysterectomy was just under five months. But I was initially referred for bleeding between periods in August 2012.

OP posts:
Original poster
LackaDAISYcal · 25/04/2014 20:18

And thanks my lovelies...champers round mine if you're free Grin

OP posts:
notapizzaeater · 26/04/2014 08:49

I've had my blood tests back,and I'm trying not to worry as biopsy was ok,but my cancer markers - CA125 are high. I don't see doc again till 6th June, ready for op on 16th June. Has anyone's else bloods come back high ?

Beastofburden · 26/04/2014 11:59

Scarlet, I could have gone in that month but chose to wait eight weeks so it was easier to take six weeks off work and not come back to mayhem Grin but then (a) I didn't have any cancer issues and (b) I used DHs BUPA and went private for the first time in my life, mainly as my GP warned me it could take ages if I didn't.

ScarlettOHorror · 26/04/2014 15:17

Thank you, I know it's a daft question but I am having difficulties rearranging work (I'm a cm) and all my parents are constantly asking if I've got a date yet :(

defineme · 26/04/2014 19:00

Hi notapizzaeater I heard yesterday I'm having a total hysterectomy and oophorectomy on the 22nd May.

My ca125 results were 119 (done 2 weeks ago) and my GP said no that wasn't great (meant to be under 35), but she'd seen it in people with endemetriosis (what I had 15 years ago) and even just heavy periods.

I was first referred for pelvic pain and bleeding for months. An internal scan showed my pelvis was full of complex cysts.

My womb biopsy came back benign. The MRI showed a large mass around my ovaries (womb 16 weeks pregnancy size) which is why the dr wants to take everything out.

He says he will put me on HRT straight away. It will be a few weeks before the results about the stuff they take out comes back. I'm just hoping it's all benign-the dr was quite reassuring but obviously couldn't say it wasn't cancer.
It will be a vertical incision and they're taking the omentum too.

I have stupid questions: should I be on a massive diet and exercise kick? I'm a bit overweight BMI 27 last time I looked and unfit to say the least-never done a sit up in my life-just a lot of walking. The pain means I'm not great with exercise at the moment too. I've got less than a month!

notapizzaeater · 26/04/2014 19:14

Defineme, I'm having a vertical incision. I'm very overweight so am on protein shakes loosing as much as I can as fast as I can.

My doctor told me anything I lost now would make the recovery so much easier. My op is 16th June (I'm bridesmaid on the 14th) so all systems go straight after. Don't know my level, will try and find out, just that's it's high.

Original poster
LackaDAISYcal · 26/04/2014 23:36

My blood results were never discussed with me pizza, but my consultant did say that cancer blood markers are very unreliable as a diagnostic tool.

defineme, my pre op BMI was 32 and not one of the HCPs I saw advised me to lose weight or said I was too overweight. 27 sounds like a fine BMI to me Grin, though obviously the healthier and fitter you are pre op the better, but in my case, I have other long term health issues to deal with as well, and my recovery has been much better than I could have anticipated. My lupus has decided it's had enough though this week and is flaring up a bit, but I'm surprised at how well I have been (after my initial overdoing things in the first week post op)

Oh, and I had an internal yesterday too; it wasn't nearly as bad as I was expecting. Speculum not uncomfortable at all and I can only think it's the lack of cervix that made it much better! and on that note it dawned on me yesterday that I will never need another smear test either!

OP posts:
defineme · 27/04/2014 13:07

That's good to hear re weight, cancer markers and bloody marvellous about smear tests Grin !
I'm just eating lots of fruit and veg, but not worrying about it too much.

BubaMarra · 28/04/2014 08:27

Hello ladies,

I hope you don't mind if I join in. I haven't had hysterectomy but I am going through further investigations because of abnormal pap smear which showed mild to moderate dysplasia in endocervical cells. When I consulted dr Google I freaked out as this means that the changes are further up in cervical canal and more difficult to spot by both pap smear and colposcopy. The bit that scared me most is that it means that they don't know for sure what already might be up there. I looked around MN for a cervical issues support thread and was surprised that there was none. So I decided to join this thread as you seem to be a lovely supportive lot :). Just want to thank all the ladies for keeping this thread running, espeacilly Daisy and Beastofburden who also seem to be very strong and positive women. Whish I could say that for myself.

I will have cold knife cone biopsy done next week and I am really freaking out about the biopsy results. I am 36 (well, 37 later this year) and I have two DDs aged (almost) 5 and 2.5. I am totally devasteted at the thought of leaving them. I've always had latent health anxiety issues which doesn't help this situation really. The anxiety is through the roof at the moment. I started counselling two weeks ago which does help.

Original poster
LackaDAISYcal · 28/04/2014 09:48

Hi BubaMurra and welcome to our little gang. IT really is an anxious time, waiting for tests and results and ime no-one in RL can really understand what you go through (unless ofc they have been there themselves)

I hope that the procedure isn't too uncomfortable and that you get your results back quickly and they are positive. Meantime, there's always someone about if you want to offload Smile

I don't feel too strong today! Went to the swimming pool yesterday and though I didn't swim as such (free family session so it was too busy to do even a stroke) I spent a lot of time bobbing up and down with DS2. I am knackered today so am heading off back to bed. I did the morning school run for the first time as well; until yesterday I've been getting up at 10am so it was a bit of a culture shock to be up at 7 this morning!

Tomorrow, it's DS2's school trip and although DH was meant to be going, he got the weeks mixed up and has scheduled a meeting that he can't get out of so I'll have to go. Not looking forward to it as I'll be on my feet all day. DS's teachers are aware I'm not long post op though so they will look out for me I'm sure!

OP posts:
notapizzaeater · 28/04/2014 10:17

Daisy, you'll have to sleep all day Wednesday. Can you take one of those little fishing chairs to sit down in as needed ?

Bub - it's very frightening the waiting, step away from google ! My best friend has threatened to take my iPad off me if I don't stop.

I've lost another 2.5lb now so 12lb in total which is great as was at seaside last week and wasn't 100% sticking to diet ...... But that's still 12lbs less blubber he has to cut through Grin

winnybella · 28/04/2014 12:44

Hello everyone. Soooo... I got the biopsy results last week and they're ok. Final staging 1b1. No more treatment needed.
Daisy- great to hear you're doing so well. I have definitely noticed huge difference in the last few days in terms of energy and strength. Easy to forget that I'm supposed to take it easy. Was just walking home with 15 pounds of shopping, ooops.
Buba- step away from Google, seriously. I had similar smear test results, although mine were Agus ie abnormal glandular cells of undetermined significance. They didn't indicate the level of dysplasia. The waiting for results of colposcopy was absolutely horrendous. In my case it was cancer but afaik there's a very fair chance it may be nothing/ low level lesion/ high level but not cancer/ in situ so don't panic. I'm coming close to 3 weeks post op and tbh it wasn't that scary and I'm the most anxious, neurotic person ever. Did you have colposcopy or did they decide to go straight to cone biopsy?

winnybella · 28/04/2014 13:03

notapizzaeater- wow, that's a serious weight loss! Well done.

Beastofburden · 28/04/2014 13:29

to bub, welcome.

I went swimming last night as I seem to be fatter than before the op, which is highly embarrassing, as they removed a massive growth and I ought to be smaller. I was 7 months "pregnant" with it; and just like pregnancy, when it's all over, you look down and think, hmm, not as much of that was baby as I was hoping...

I appear to have filled the entire cavity with chocolate Blush

Original poster
LackaDAISYcal · 28/04/2014 13:30

Well done on the weight loss pizza! I think it may all have transferred to me...my scales groaned this morning when I stood on them Blush

Great news on the staging winny Grin It's a massive weight isn't it, to know there no further treatment required. Will you have follow ups for the next few years like me?

Well since I posted earlier, I went back to bed and slept for three hours! Must have needed it!

OP posts:
Original poster
LackaDAISYcal · 28/04/2014 13:32

ha, cross posts Beast Grin I blame the lack of movement! Nice to be able to get back to some physical activity though!

OP posts:
BubaMarra · 28/04/2014 13:33

Thanks everyone for your warm welcome. I am glad I found this thread as I feel so isolated with this problem sometimes.
Daisy, although you feel knackered, I am glad to see that you are so active. Yes, you are right, noone in RL can really understand what I am going through. One minute I am okay, next minute I could be having a panick attack. I read the previous threads, your journey has been a rollercoaster too Thanks
notapizzaeater, that is a great weightloss! I lost weight recently and was so happy with myself when this crap started. Now I put it all back and don't really care to be honest.
winnybella, very glad to hear that you don't need any further treatment! My latest pap smear was also AGUS, then they did a deeper smear and sent it to pathologyst (not cytologist). It was like endocervical curettage, just without curette but with a brush, if that makes sense. It came back as mild to moderate dysplasia. Do you mind me asking what symptoms you had that took you to where you are now?

winnybella · 28/04/2014 13:56

Buba- ah, I had colposcopy after the smear test results were back and the doctor could actually see a small lesion that seemed very suspicious and took chunks out of that plus lower cervix and the brush biopsy of the uterus.
Symptoms... Hard to say, really. I had pain aftersex around ovulation for years but that was always attributed to other things by the docs. I had very occasionally a bit of spotting after sex in the last few years, but again that was thought to be due to cervix being hit or normal spotting during ovulation. I have noticed increase in that in the ladt year, though. My smear tests were normal but I was about 10 months late with this one.
I would think that the mild/ moderate dysplasia result after the more thorough smear is rather encouraging.

winnybella · 28/04/2014 14:01

So I mean it's hard to say what was actually caused by the cancer, I would think the recent spotting as it was a new symptom iyswim
It really could be just a low level lesion in your case, so try not to panic.

winnybella · 28/04/2014 14:08

Daisy- yes to check ups but don't know what and how yet. I'm seeing the surgeon again on Friday. I think it's every four months to start with and some will be with the hospital and some with my gynecologist ( yup, I thought I would never have to do that again, but nope, I think it's for vaginal smears, yay Hmm)

BubaMarra · 28/04/2014 14:39

Thanks winny for your detalied reply and kind words.
I had my pap smears done annually. As I mentioned before I have latent health anxiety issues and was not confident about 3 yearly screening so paying private pap smears was my way of coping with it. All the pap smears were fine until May last year when it came back as ASCUS. I had colposcopy and a punch biopsy which came back as CIN I, so really small changes that just needed closer following. But 4 months later, follow up smear came back as AGUS and the colposcopy was clear. This means that the changes are somewhere further up into the cervical canal.
That was 3 weeks ago. Now I am awaiting cone biopsy. It all happened so quickly. I really don't understand, I was having regular dr visits and more than regular pap smears done and now all this is happening.
But the good thing is that just writing here and "talking" to other people who go through similar issues helps a lot Thanks

Original poster
LackaDAISYcal · 28/04/2014 17:38

Oh my word, vaginal smears

Is that because it was cervical in your case? I assumed I would just get a quick internal and jobs a good 'un Confused

OP posts: