Hi Doyle and welcome to the Cancer Chat community.

Hopefully some of our members who have been in this situation will offer their thoughts and advice to you soon but if you'd like to have a chat about this with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

If you think it may help put your mind at ease, you could try getting a second opinion about your treatment as well.

Kind regards,

Steph, Cancer Chat Moderator

Hi Doyle

I'm really surprised that the hosptial has back tracked on your hysterectomy, especially with a family history of womb cancer.  I was diagnosed with Complex Atypical Endometrial Hyperplasia on the 9th August and had a robotic assisted hysterectomy 4 days ago.

Go back to your GP and insist you want to proceed with a hysterectomy and get them to push the hosptial.  Everything I researched when I was diagnosed a month ago said that a hysterectomy is a must for this diagnosis.  Simple Non-Aytypical Hyperplasia can be treated with a Morena coil but this can't.  I've had everything taken away and now have to wait for the histology results as there is still a 40% chance they will find cancer was already in my endometrial wall.  Please don't let this lie. You have to push the NHS on this.  

I'm here if I can be of any help at all xxx

Did you get the pathology results? xx

Hiya Cottonclowns

I got my histology results a couple of weeks ago.  Unfortunately I did already have womb cancer but the good news is that it was graded at 1A which means it had progressed less than 50% into the muscle wall and I won't require any more follow up treatment.

That worries me somewhat because, if I had been graded at 1B, I would would be receiving radiation treatment.  In the circumstances, I have decided that I will pay privately for annual pelvic MRI scans to be on the safe side.  From what I have researched, there is a small chance the cancer can recur and, if it does, it will be in the bowel or bladder and I really don't want to take that chance.

Are you currently awaiting some results? xxx

Oh sweetie, I am sorry to hear. 

Like you say though, the good news is it was early and I agree on the private MRI to be sure. I hear this type is slow growing and spreads to bladder/bowel first, but it is something you still dont want. 

I've had my results but, I don't trust that I'm on the right treatment.  In August I was told I have hyperplasia that is not atypical and b9 and I can either carry on as normal, or take progesterone. I opted for the mini pill, but have been bleeding really heavy for 4 weeks. The Doctors say it is expected, but due to the size of clots (that contained enometrial tissue) I was to have another scan. That scan shows my lining regressed from 15mm to 9mm. Yay, good right? 

Well, the thing is the report states, "The endometrium appears slightly hetrogenous in ecotexture." I am told this is not too concerning as it could be the hyperplasia itself, the bumpy areas due to loss of tissue, the natural shedding and clotting, polyps. 

Google tells me cancer. 

So I was given new pills. 5mg Northisterone 3x per day to take a break at day 21 and have 7 days bleed.  

It stopped my bleeding completley and instantly and I wasnt sure if that was safe. It is all hospital and no GP involved so hard to get straight answers. My husband doesnt want us to fall pregnant while my uterus is being ugly. So I took the mini pill again and bleeding started right away. 

I did begin to bleed heavy again, but then took a dose of Tranxemic acid to slow it down and it is really steady now, lightly spotting. I feel it is gonna get heavy again though. 

I am on day 45 of progesterone treatment with 25 days of heavy bleeding. I get my scan in 3 weeks. I feel I need hysteroscopy. I want the hysterectomy. I have damaged uterus to untreated PID that I can only imagine came from a test inside my uterus? I never had the other issues that cause it.

I have other issues too, just feel it would be better out. 

I'm 38 and we did want more kids, we have one teenager. But health is priority right now. 

How are you after the hysterectomy? Healing well? xx

Thank you. Yes I'm well on the mend now thanks.  The worst thing about all of it was a urine infection 7 days after the hysterectomy. I was pleasantly surprised how minimal the pain has been during the healing process.  I went back to work 3 days ago after 4 weeks off and all is good so far. 

Wow you're certainly going through it you poor thing. Do you know if your endometrial hyperplasia without atypia is simple or complex?  My sister was diagnosed with simple without atypia 10 months ago.  Like me she is post menopause.  Her lining was at 9mm so it was scrapped and a mirena coil fitted.  Her check up 4 months later confirmed that the coil is doing its job and the lining is now behaving itself!  My understanding of endometrial hyperplasia is that if it is not atypical, then it is NOT a precursor to cancer. It most certainly is great news that your lining is now thinning.

When I was 47 years old and pre-menopausal I had the most horrendous heavy periods with clotting etc. and, after a biopsy with hysteroscopy came back clear, I was prescribed norethisterone for a while.  It started to make me feel nauseous and ill so I came off it and soon started bleeding heavily again.  I was then offered a choice of an ablation or the mini pill.  I went for the mini pill which I took for just over a year and never bled at all whilst on it.  When I stopped taking it, I never had another period.  I appeared to sail through my menopause without any hot flushes, night sweats etc., until May this year when the next sorry chapter of my female reproductive system kicked in once again, culminating in a full laparoscopic hysterectomy with bso.

I wouldn't worry too much about communicating with the hospital rather than your GP.  I found the consultants at the hospital (I saw a total of three) had far more answers to my questions than my GP.  You could always ask to see another consultant (who may look at things a bit differently to your current one) just to get a second opinion.

I'm sorry that I can't be of too much help to you as you're in the enviable position of only being 38 years old rather than this old bird of 53!  If I had the knowledge at your age that I have now and I was in your position, I would most probably opt for a hysterectomy (keeping your ovaries and fallopian tubes of course) just to be finally done with it all.  But that is easy for me to say because I chose to never have children.  I cannot imagine what choice I would make if I already had a teenager but would now also like another child/children.  

Please let me know how things go.  Thinking of you xxx

Hi hun, thanks for the reply. 

I don't know if it's simple or complex just that "it's normal" and "It isn't cancer." I saw the report for a split second says "No atypia" but I have asked for more info because I have a right to know if it is complex or not. 

It sounds like you have been through the mill too and quite the long one at that. At least now you are free of it and I have so much faith that you will mend well :) your sister too. 

I was offered the coil and declined it, now I wish I would have agreed so if its offered again I will have it. I just don't like the idea of it irritating my pelvic area

I will let you know what kind I have as soon as I know. I never asked my consultant, as soon as he said not cancer that was all I needed and not atypia. My GP checked and said it is normal, no atypia and no cancer. So possible simple? 

I will know on Wednesday as asking GP,  but have to wait until end of the month to speak to my consultant. I have had a few consultations during hospital stays with differerent OBY GYNE docs and they all seem to say pretty much the same. I may see what I can do next week. 

I'm on Noriday again now mini pill and my bleeding has really settled to just spotting. I pray this means it is clear. 

I will keep you updated. I wish you all the luck and hope you're 100% soon, sweetie. xxx