Hello, I’m 42 and have always had problems with my periods. I was diagnosed with PCOS in my twenties and recently adenomyosis. At one of my scans the Gynaecologist said I had a suspected polyp and a thickening of the womb lining that she wanted to be checked so I had a hysteroscopy at the end of June with biopsy and I had a coil fitted at the same time to help relieve my period pains and heavy flow. I received a call to confirm my biopsy had shown cell changes (complex atypical hyperplasia) and was sent for a CT scan and MRI. I was asked to prepare that my diagnosis may be upgraded on review of MRI but thankfully it wasn’t and treatment was planned on diagnosis of complex atypical hyperplasia. I was given the choice of hysterectomy or coil and hormone treatment with repeat biopsy’s every 3 months. Given my history of heavy and painful periods, and I’ve completed my family, I decided to have a hysterectomy and had this two weeks ago (Vaginal hysterectomy including salpingo-oophorectom (laparoscopically assisted) + ureterolysis) I had my womb, cervix and fallopian tubes removed, but requested to keep my ovaries to avoid surgical menopause. My consultant supported this, but did flag that I may need my ovaries removed in the future depending on my pathology report. I’m now waiting for my post op pathology report and feeling really anxious. The past 12 weeks have been a rollercoaster of tests, waiting for results, surgery… I know I’m fortunate and AEH is a pre cancer but I am now worried if they upgrade that diagnosis I will need another surgery to remove my ovaries. I am also feeling completely overwhelmed by it all. I have found this group really helpful over past few weeks and I just wondered if anyone else had a similar experience ?
Hello LRO
Welcome to the Online community and the Womb cancer group. I am glad that you have found the group helpful over the last few weeks. I am sorry to hear about your tests and subsequent diagnosis of complex atypical hyperplasia. I hope that your hysterectomy went as planned and that you are now recovering and taking it easy at home.
I can understand feeling overwhelmed by it all. For me also everything happened so quickly and it seemed at the time like it was one test after another and numerous hospital appointments. Then you have the surgery and starting to feel a bit better and it gives you time to think about it all and process it all. The waiting for results is really hard and all sorts of things go through your mind. I waited 3 1/2 weeks for mine post op but there is variance between hospitals and also how busy they are. I also found that because my hospital only has a MDT meeting once a week that could delay things as they would talk through things as professionals and then call me after it.
I can understand your decision to keep your ovaries and it was good that the consultant has warned you that there may be a possibility they need removing at a later time. I think the thing to bear in mind is that you have made the best decision you can, with the facts available at the time and with the doctors blessing .Things may change at some point in the future. But they may not.
Try to focus on recovering from the surgery. I felt a bit low at the stage you are at as you start to feel a bit better from the surgery but things have not got back to normal and you still have the pathology to come back.
If you feel like chatting it though with someone would help, then please do give the Support Line a call. They are lovely on there. The number is at the bottom. In the meantime if there is anything you need please do ask.
I hope you do not have to wait too much longer.
Jane
