Hey Digby, I was in a similar position to you earlier this year. Post meopausal bleed, various tests including d&c and hysteroscopy. Initially told complex hyperplasia with atypia in the womb lining. My consultant said out of 100 women with this condition, 40 will go on to develop endometrial cancer during the following 20 years. (Some figures suggest this is on the high side, but he was very believable.)

Heck, my babymaking days are over. I'd hoped to avoid a hysterectomy, especially when waving my ovaries goodbye. It seemed the only sensible thing to do. Everyone needs to make their own decision.

So I had the op you've been advised about in mid February this year. Honestly I felt better during the first couple of days than I did after having my apendix out five years ago, 

I'm not the fittest person around, but I did have a pretty good recovery. I found a useful website called Hystersisters, an American based site so not everything is relavent to UK practice. Although it's useful , be careful not to get carried away reading too much, people tend to post if they have a problem.

Post op my main issue was constipation, jeepers, I took the meds offered and drank lots of water, it still took a while to get back to normal. Your insides get moved around during the op so everything needs to settle into a new position. 

So I'm six months post op. I do get twinges if I lift heavy things. Overall I feel fitter than I have for quite a while, going for more walks, I'd read that ladies on average put on 27 pounds in the year following hysterectomy, I've lost more than that. I do feel hungry a lot more than before, but so what? 

Any doubts I had about the operation were put aside when post op reports showed grade 1 cancer in the womb lining. Of course there's no way of knowing what your results would be. I was trying to avoid future problems when I actually had cancer. No further treatment was needed in my case, I have open access to clinic with any concerns rather than regular checkups. I opted to have surgery because  I thought well I'm 58 and not going to get any younger. Really glad I went.

regards, gamechanger

Hello

My story is slightly different I had no choice about my hysterectomy. I was diagnosed with grade 1 stage 1 endometrial cancer in April this year. I had a fully laparoscopic hysterectomy plus the other bits on May 14th. I was in hospital overnight and came home  the next day. I recovered well from the op but unfortunately I developed an infection in one wound which held me back a little. Histology uograded the the cancer to 3 a more aggressive cancer. So ten weeks after first op I had 92 lymph nodes removed to be tested. Again I was in overnight and recovered well but again another infection. However I have been type 1 diabetic for 56 years and recovered remarkably well considering  I’m now nearly six weeks post second op and feeling back to normal... well as normal as I ever was. Lymph nodes were clear and I just need three sessions of internal radiotherapy. So although the first op was not really optional the second was my choice and I have not regretted it as it meant I didn’t need chemo or an extended treatment of external radiotherapy. 

Everyone of course makes their own choices based on their own circumstances. However I looked at it like this if it saves me further or unnecessary treatment it was worth it. Take your time to consider, talk to your consultant and specialist nurse but do not google. My gut feeling was to go for the second op but it took four weeks to decide and I changed my mind several times but I was happy with my final decision.

i hope everything goes well for you.

Sundial

Hello Digby, I've just come home from hospital after been given virtually same diagnosis as you and same proposed treatment plan. I was 8% risk of developing cancer in next 4 years and 28% in next 20 years? ( I think, I was taking in a lot of unexpected information) Anyway, I wondered what you did- did you have the hysterectomy? Why did they recommend loosing ovaries? If you had the operation, how were you hormonally? It's not the op that worries me, it's the hormone adjustments I'm worried about..

all contributions welcome 

Hi, I'm two weeks post-op from an abdominal hysterectomy with removal of my ovaries, tubes and a rather large (melon-sized) fibroid in the mix.  My post op test results have just come back and confirmed that I had complex hyperplasia with atypia.  I'm 46 and my mother died from endometrial cancer.  So now knowing the confirmed results I feel like I've dodged a bullet and absolutely made the right decision re the op.

 The first two weeks have been painful but manageable, however I was home two days after the op and am managing to do most things independently now.  I've been out doing short walks for the last week but have been careful with lifting etc.  I'm not sure the hormone changes have fully kicked in yet but I have started feeling overly hot at night so I think I'm getting them now!  I may visit my GP in the next fortnight if the symptoms get worse.   Hope all goes well with you x 

Bless you for getting back to me- I really wish you well with your recovery. I just wish I had a crystal ball to help make my decision. I think I am going to wait until after my next biopsy and take it from there. I wonder if I can keep my ovaries. I've never wished I had the menopause already but it would make all this so much easier .

lots of rest to you! 

Good morning everyone 

I had a polyp removed and the biopsy was thst I have complex hyperplasia with atypia. 

I'm a little concerned that the NHS will take to long in the light of the impact of Covid-19 and our health services and I will have to wait too long.

I just want it to be managed asap I only found out last week so I'm still reeling a little from that news.

I too worry about how I will be after a hysterectomy especially hormonally. 

I hope you are all ok.

Hi there

try not to worry. Have you been able to speak to your GP ?

i was diagnosed 11 years ago with it & I've been using the Mirena coil ever since, thankfully it has been doing the job so I still have all my bits in tact.

Unfortunately my periods have returned & are getting longer & heavier again so while I'm waiting to speak to my gynae, my GP has given me the progestin only pill will also works to thin the womb lining.

Take care

Thank you

That has made me feel better.

I was under the impression that with atypia you needed an op of sorts to remove it.

I am so glad to hear youre ok.

The bleeding is s nuisance.

I lost so much blood with my polyp I had to have blood transfusions.

I  appreciate you taking the time to respond.

Kendra

Hi Kendra

I also had polyps with mine so I can sympathise.

Regarding having an operation, I think it depends on your personal circumstances plus which gynae you see, I've had 2 say no to a hysterectomy & 1 say yes ! Unfortunately there isn't much info out there on the condition because most women have a hysterectomy, so it's all a bit of an unknown for me, my gynae wants me to have an annual check up & biopsy until I've been through the menopause - I'm 46 so who knows when that'll be.

Take care