Waiting for test

Hi, I am going through similar right now. I am 47. I had no periods due to the mini pill for 5+ years. Then in mid December I had a massive bleed, had to change maternity pads - yes normal period ones were not enough - every hour. I was using super plus tampons as well. This went on for weeks and never stopped. Lots of clots and tissue passed as well. I stopped using tampons during this time as I felt the risk of infection was high. 

Due to being away from home and Christmas I could not see anyone until mid Jan. I was referred to a gynaecologist then and have since had an ultrasound and hysteroscopy. I too had CINN3 and some kind of minor cervical surgery when I was in my 20s. I was sent for a TVS ultrasound on 20th January, which showed several fibroids (all under 1cm) and womb lining thick at 47mm. On Friday I had a hysteroscopy and they also found multiple polyps. My mother had stage 3 womb cancer age 60 so I am very worried. After my hysteroscopy I asked the consultant what he thought and if I should prepare myself for bad news, he said there was an area of thickening that he did not like the look of. I am now awaiting biopsy results. I have now been put on Northistrone 5mg x 3 times a day which has reduced the bleeding.

My consultant has already put me on this list for a total hysterectomy even if my biopsy is clear. I was bleeding whilst on hormones already and the Mirena is not suitable for me so it is my only option. So it may be offered to you and I think at our age it is viable as it should resolve all issues.

My current concern is (there is a new one every day btw!) if it is cancer, which tbh I suspect it is,I will have to have my ovaries removed as well and then have instant menopause. I have no real menopause symptoms currently and there has been no mention of HRT post op. I feel a bit abandoned. I understand if it is an estrogen receptive cancer then HRT may not be available to me either. But I am no expert and still finding my way with all of this.

I suspect your next step will be a hysteroscopy to have a good look and take biopsies before a plan can be made. 

Thank you for your reply. I’m sorry you are going through something similar. It’s awful waiting and worrying, it’s the unknown I suppose, I will be much better when I know what I am dealing with good or bad. 
I do have premi symptoms mainly night sweats and brain fog! I even gone out of the house in odd shoes before haha. I would definitely be keen to have an hysterectomy I have five children and definitely not planning anymore. All my friends are the same age and there periods have got lesser and lighter. I am hoping my symptoms are caused from having fibriods, as I have a fairly big one. My doctor isn’t concerned about the fibroids as such, she’s more worried about the lining and my womb been enlarged. 
hopefully you get good news and all is ok. We women really do go through it sometimes! Xx

Yes I feel exactly the same. I feel like I am at the top of a big flow chart that is my life and there are so many directions that everything could now go! I know I have at least 10 days to go before any cancer is/isn't confirmed. The waiting is killing me. It's all I can think about. I am also worrying about Lynch syndrome given my family history but I am parking that worry for now.

I really hope your issues are due to peri-menopause and fibroids. I know some people who did not have cancer and just heavy periods before they stopped, so it could be that. But if not, it sounds like you are probably suitable for a hysterectomy. My doctor wasn't concerned about fibroids either as they are nearly always benign, although one of them he said needs resecting if I was to keep my womb due to the amount of bleeding it is causing. But with so much else going on in there now it seems unlikely. I could not find any stories of thickening to my degree of nearly 5cm, but I have seen plenty like yours at 17mm which turned out to be nothing to be simple hyperplasia and treatable. So try and stay positive. Either way it sounds like you are in good hands and being seem quickly. I thank my lucky stars I now know about this rather than being in ignorance like I was before. 

Hello Haylz16

Welcome to the Womb group.

I am sorry to hear that you have been having such a rough time with your periods, I can understand why you would put it down to menopause. I also had similar bleeding at a similar age to you. After trying to manage it for some time- I went to the doctor and was put on the mini pill. Within a few months, my periods had virtually stopped. I felt better than I had for some time. Due to the pill stopping my periods I was not sure where I was in terms of peri/menopause. 

After some time of no bleeding I had a heavy and sudden bleed. This is what sent to to hospital and for the testing. A month later I was in surgery having a hysterectomy after being diagnosed with endometrial cancer. I do not know how long I had had it. I do not know how thick my lining was, all I know was that something was seen on the ultrasound and also my womb was enlarged. 

WIth the amount of blood loss you have been having and the other symptoms- a 2 week referral would be the normal next step. It is not to say that your symptoms are being caused by cancer, it is more that they need to be able to rule it out. What I would expect to happen next is that you will be offered a hysteroscopy- where they use a tiny camera to have a closer look. They would normally take some biopsies at the same time. Hopefully the biopsies will come back clear and then they can look at how best to treat the bleeding. It is important to rule out anything serious before deciding on the HRT as some cancers can be hormone positive and could be affected. 

I can understand why you would consider a hysterectomy and the amount of bleeding must be hard to deal with. Hopefully you will see the gynaecologist and the testing will be done quickly and you will know the next steps.

Good Luck

Jane

Hi, I’ve also been through similar. I decided to go to the doctor when I turned 53 and was still having periods. There was something about them that made me suspicious. Thank goodness I did. Turned out to be early stage cancer and I had the full hysterectomy, with ovary removal, last month. So please don’t panic about this. If it is cancer, they will move very quickly. Most uterine cancers are early stage and slow growing and the prognosis is excellent. 

I did a lot of reading about HRT and endometrioid cancer after one consultant told me I could stay on HRT and then another told me to come off! There was new guidance issued in August 2024 by the British Menopause Society and the specialist org for gynae cancers. It isn’t a flat ‘no’ for HRT, but depends on your stage, grade and type.  

Hi Jane, 

thank you very much for your reply. I hope you are all ok now after your hysterectomy.  I am hoping they offer me an hysterectomy even if this isn’t anything sinister. I just want the bleeding to stop it’s caused me to be anaemic and tired all the time. Hopefully things will look brighter in a few weeks time  it’s scary stuff that C word hope your well xx

Thank you, il try not to worry to much! Sorry you went through that and I hope you’re all well now x