Atypical polypoidal adenomyoma/womb biopsy

Hello All

Thought I’d share my experience which seems to be never ending….

so, few years back I went to A&E with suspected appendicitis due to cramps / pain under belly button, ovary area. I was sent for a transvaginal scan which I was not prepared for at all! (this was in  height of lockdown and will forever be known as ‘lockdown mess’ as I very politely pre warned the guy about to see it.) Anyway I had raised white blood cells (never known why to this day) and found something in my womb. Appointment came through for hysteroscopy, I was like can’t be any worse than a smear, surely?!  I’m sure my cervix is upside down, inside out…. Never pain free! How wrong was I…. It  was bloody horrendous, turned out I had 2 fibroids and they took cells from it. I would say this was like a period cramp  x50! Results came back normal on these cells.

Last year probably for a good 6 9 months I noticed my periods were not right! I’ve always been like clockwork, heavy and 7 days but here I was bleeding, spotting in between my cycle to the point I felt like I was bleeding all the time! My partner made a GP appointment as I just put it down to hormones etc. My Gp was excellent and put me on fast track….CA125 Blood test came back normal, another transvaginal scan, ultrasound - operation veet’ was in full force! Found something on the scans, sent for another hysteroscopy. Yes, I cried like a baby even before anything went in as per last experience. Removed polyp, chucked in  Mirena coil which I felt kinda pressured to have legs wide open, bleeding and in pain. That was November 6th.

Went for coil check up at my Gp about 13 weeks later and she asked if I had any results? and I needed to chase it up. Phoned consultant secretary and she was a bit gobsmacked. She was brilliant though and got me an update, turned out consultant who did my procedure had left the trust a my results were being looked into by another consultant and were sent to some women’s lab. The she called to say phone appointment set up with this doctor (another man! Why do men do this profession?!)  so after 16 weeks I got my r esults over the phone - Atypical polpoidal adenomyoma which is basically a rare uterine tumour , pre cancer cells. He asked me if I had plans for children, got children etc. I turned 39 in May. Then sai d he would send through a repeat biopsy for May…. Literally my lady bits can’t take much more!

The repeat biopsy was 4 Weeks ago yesterday and  was told I would have results 2-4 weeks. Seriously us wo men are just expected to take these barbaric procedures with the aid of Paracetemol…. Which I didn’t take before hand!  The only thing I’m not happy about is the complete lack of information you get from these consultants, I feel kind of in limbo, from what I have googled it points toward hysterectomy. Which leaves you questioning the children thing as I don’t have any. Etc. The one thing I did get out of him is if results are abnormal, then goes to MDT. If normal then lucky me has another pipelle biopsy in 6 months time.

Apologies for the life story. Anyone going through similar who fancies a chat, I’m here. I would also like to say I think all you ladies going through similar with the waiting game and obviously who are diagnosed with this awful disease are truly amazing and brave. Love to you all. Jen. Xxxxx oh yeah and 9 months with the coil I’m still having periods. Woop woop! 

  • Hello Jen

    I'm sorry to hear about all that you've been through over the past few years with your health and that you're currently still waiting on the most recent set of biopsy results. Hopefully it won't be too much longer until you have some answers. 

    We know that waiting for results can be a difficult time and it's natural that you may be feeling anxious about what the recommended next steps will be based on those results. It can sometimes help to talk with someone about how you're feeling and I wondered if you might find it useful to chat things through with one of our nurses. I'm sure they will be happy to offer any advice and support they can along with helping you think about any questions you might want to ask at your follow-up appointment. If you'd like to talk with them they're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I hope you have some answers soon and that the team is able to improve things for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Jenn, thank you for relying to me, think I’ve scared everyone else off with my ‘novel’. I have a further update now as consultant called me after I called for an update on my results. I have to go in as a day case under GA for further investigation of my womb. The biopsy results came back abnormal again. So would you know what this procedure would entail Jenn? Hysteroscopy ? Not had much info yet. Obviously my polyp showed that atypical polypoid and now my lining is abnormal too. Just glad I will be under GA this time around. :) thanks again for replying. Just nice to talk to someone. Will note that number down. Jen. Xx

  • Hi Jen

    I'm glad to hear that you've had an update from the hospital. I'm sure it was disappointing to hear that the results were abnormal again but hopefully this next procedure will allow the specialists to properly examine your womb and take any further biopsies they feel are needed to give you definitive answers and work out a treatment plan. 

    Do give the nurses a call if you need to talk things through and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator