Northern Ireland

I had a hysterectomy in June and was told I might need that- to be honest until they have took your womb out and done a biopsy they won't know - I didn't need that but chemotherapy and radiotherapy as My biopsy came back with is showing the cancer had penetrator the lining of the womb- Stay positive they can do wonderful thing today

Thankyou xx

I hope you don’t mind me asking but how long did it take for them to diagnose you? I’m currently waiting for my case to go to the multidisciplinary team and as you say the waiting is hard.
From what the consultant has said I’ll need surgery too and I’d like it asap. 

I was red flag referred in May. 

Seen and biopsied at the end of August

Results 3 weeks later.

Surgery nor scheduled yet.

Hi I've just seen your post asking for experiences from NI. I don't come on here much anymore. 

I was diagnosed in 2022 at 34 yrs old. I finally had a total robotic Salpingoectomy hysterectomy in February this year - but I had it in Liverpool after fighting for 2 years to get the surgery in NI. 

You can read my story if you click on my profile name. I am probably an extreme exception but unfortunately my experience has been very poor here in NI. 

My experience of having surgery in Liverpool was world's apart from both NHSCT and BHSCT. 

Oh goodness. Just read your experience and it sounds horrific. I don’t understand how they think allowing cancer to continue to grow is preferable to a hysterectomy in a young woman. 
I have my appointment at Craigavon hospital on Tuesday. I’ve been told we will be discussing a hysterectomy which I’m relieved about. I don’t know how it will be done. I suppose that’s one of the many questions I need answered.
A friend who has had one herself said I might not be a candidate for keyhole surgery due to scarring from 2 c-sections. At least that was her experience. That’s another question I have to ask.

It's my understanding that robotic surgery is not available in NI so unfortunately you wouldn't be able to have the surgery I had - why it has not been invested in here is beyond me but that's a discussion for another day! My surgery was amazing, I went down to theatre at 4pm was back on ward by 9pm, off the morphine drip at midnight and up and walking by 8am the following morning. I was discharged at 6pm that evening - I opted to stay in Liverpool for a few extra days just in case of any post op complications and got ferry home. 

From the discussions I had with both NHSCT and BHSCT the options for surgery vary from trust to trust. All of them perform abdominal hysterectomy and then it seems to vary as to which hospital can perform laprasopic and/or vaginal hysterectomy or combination of the two.

It also varies from trust to trust and ultimately on the predicted stage and grade as to whether they do Salpingoectomy (remove fallopian tubes but leave overies) or Salpingo oopherctomy (remove everything). When surgery was on cards in NHSCT they wanted to take everything which would have put me in immediate very premature menopause. Liverpool actually counselled me on the pros and cons and ultimately I decided to keep the overies which means I'm not menopausal. If your post menopause then this won't have much bearing if your pre or perimenopausal it's something to consider and ask questions about. 

If you have had abdominal surgeries in past there is a risk of scar tissue build up making laprasopic surgery more difficult, so it may be that they plan for laprasopic but won't know untill they are actually in you whether they can cut through scar tissue in which case they cavet it with a disclosure that they may convert to full abdominal. 

I don't have any experience with Craigavon so can't guide on what is their most likely scenario. I was seen at Antrim, City and the Royal. 

Ironically I ended up having emergency surgery in Antrim 3 weeks after my hysterectomy for a blocked bile duct and then another emergency surgery for in April to remove my gallbladder! You couldn't write it. 

My advice for Tuesday would be to write down any questions you have beforehand and take the bit of paper with you. I'm fairly level headed and calm by nature but there was always something I forgot to ask about. No question is too silly so ask away. 

If you can take someone with you. Two sets of ears are better. You often find you missed things that the other person picked up and if you've discussed your questions with them beforehand if you forget to ask anything they can prompt you. 

Thankyou very much.

I find it difficult to understand why after refusing to carry out hysterectomy for so long you were them only offered the most radical type .

Liverpool Women's Hospital appears to have worked with you and your individual needs .

I find the concept of consenting to them rummaging around when the woman is under anaesthetic and then deciding which procedure to carry out very frightening.

It's only since joining this forum that I learnt that endometrial cancer affects young women too.I knew about PCOS being a risk factor but I not sure that that is widely known.Waiting lists for gynaecology are so long in N.I.I am sure many women with PCOS are never diagnosed.

Thankyou for sharing your story ️ 

Hi, I was diagnosed with Endometrial cancer on 10th September 2024. I had a keyhole hysterectomy on 22nd October and and was home two days later.

I had lots of scar tissue from two ectopic pregnancies and two cesarian operations (I had IVF babies) but they managed to do it OK. I have 5 very small holes across the abdomen. 

I have just had the results back from the lab and I was very lucky, I was stage 1A and the cancer had not spread !! I feel like I have won the lottery.

I now have to discuss the option of chemo as a preventative. I really don't know what to do. I know it's probably sensible to have the chemo but after reading about how sick it makes people, I'm not sure.