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Hysteroscopy and still waiting

Indi42
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Today I had a hysteroscopy, I have gad numerous tests over the last several weeks for abnormal bleeding being my prime symptom and the finding of a 6cm fluid filled complex cyst with solid components.

Anyway in hysteroscopy they found a polyp which was removed and she informed me that I have an unusual shaped uterus, with 2 cavities. This has never previously been mentioned to me during previous scans etc, I did have an ablation 2 years ago and wonder if that's changed my uterus??

Next stages for me is waiting for follow up with consultant, awaiting appointment and CT scan, awaiting appointment and awaiting info from MDT now next Tuesday.

My uterine cell biopsy from last week has come back with some abnormalities but they are unsure if its because I was on a period, CA125 is high (141), CA19-9 normal and USS showing large complex cyst on ovary. 

Waiting, waiting and more waiting...

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    Hi Indi42

    I've just been reading your posts and I think we are in a similiar situation. I went to GP in 2021 with changes to my periods and severe PMT. I had a U/S which identified a polyp so then had hysteroscopy which couldn't find polyp and was then discharged.  Roll on to the end of 2022, my periods were getting worse, my mum was convinced I was perimenopausal (I'm 37!) so went back to GP to discuss.  She advised I was to young to be peri meno so did my bloods, my CA125 came back raised, we did it again and it was higher, she referred me via the 2 week wait. Referred for U/S which again identified polyp which was bigger than the last time, hysteroscopy couldn't find polpy again!!  So then had MRI scan which was apparently very concerning and unexpected, so was sent for CT scan with all the contrast stuff. Case was discussed at MDT, CT scan was less concerning but there is something at the end of one of my fallopian tubes/ovary and the polyp is still showing on scans! I'm due to have my fallopian tubes removed in the next coupld of weeks, depending on whether they are bad or not they may go back and remove ovaries.  But my consultant explained that he wants to preserve my ovaries for as long as possible due to the risks of me being in menopause at such a young age which would happen if he removed ovaries too. 

    The waiting is hard but I try and think to myself that it is what it is and worrying about it isn't going to change things and is only going to spoil this time.  Obviously it's not always that easy but what can you do expcept keep going! 

    I'm not really sure why I've even posted, I guess just wanted to reach out and let you know your not alone. 

    I hope you get some answers.  My hospital have been very good and I got a call from one of the nurses from the gynae oncology department after the meeting to update me. Hopefully, you will get one too.  I had CT scan on a friday which was within week of MRI results, MDT meeting the following Tuesday, a call that day and then appointment with my consultant the Friday. My op was then scheduled 4 weeks from that which I don't think I can complain about really. 

     

  • Offline in reply to MrsH12

    Thanks for sharing your story. It's good to read others in a similar situation.

    I now have a CT booked for Sunday ahead of the MDT on Tueday. I really hope they phone on Tuesday after the meeting and I hope they have all the results to take to the MDT so they can come up with a plan.

    They never mentioned contrast stuff to me but I'm not allowed to eat for 3 hrs beforehand. 

    I've never been poked and prodded and tested so much in such a short space of time before and there has also been a difference of opinion from one consultant to another. Last week consultant A said not sure if endometrioma therefore may not be any endometriosis, need to rule out cancer. Consultant B yesterday, looks like an endometrioma which would equate the high CA125 and probable stage 3/4 endometriosis but need a CT scan to see what else might be going on around your pelvis outside of the cyst.

    I'm sure I will know soon enough.

    Good luck with your Op, mine will likely be a hysterectomy I've been told but I would like to preserve my left ovary so I can go through menopause naturally. Obviously I'll agree with what thry think is best in the end.

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