Hi. I am 45, and a mum to two preteen boys.
I was a member of the group a couple of years ago when it was found I had thickened endometrium, but not cancer. I was given a Mirena coil at that point to boost my progesterone, and to protect me against developing cancer. Unfortunately this had to be removed after 6 weeks since I was getting headaches and my doctor was afraid I was at risk of a stroke. Having seen a gynaecologist I was put on a waiting list for a vaginal hysterectomy in January 2020. Then Covid happened and the operation didn’t take place- I have been on the waiting list ever since.
I started to bleed on 6th April, which I thought would be a normal period. But the bleeding became heavier and heavier until I finally gave in and called 111 in mid April. They sent an ambulance and I was taken to A&E in the middle of the night. I needed two units of blood, and was admitted to hospital for two days. The consultant who was on duty told me the bleed had been caused by my INR being too high (as I am on warfarin) and that I needed an endometrial ablation, which he would book as soon as possible. I kept on asking if he was sure there was nothing else happening as he didn’t scan or anything, but he was adamant that this is what should happen.
When my ablation appointment arrived I was still really worried, so I phoned to speak to the consultant who was due to carry out the ablation. Thank goodness she was brilliant and listened to my concerns, and agreed she would carry out a hysterosccopy first.
I opted to have a general anaesthetic for the procedure. However, when I arrived in the Day Case unit, no one had booked me to have a covid test in advance, so I was told I could either go back home, or have the hysteroscopy under local anaesthetic instead. I was bleeding so badly still I agreed to the the second option, which actually turned out to be a lot less traumatic than I thought it would be. The doctor took a number of biopsies. Following the procedure, she also gave me an injection of Decapeptyl to shut down my ovaries and my menstrual cycle and to bring in a temporary menopause, in case this was adding to my bleed.
I went home, but continued to flood blood, and last Friday was readmitted to hospital for a further blood transfusion. I have also had a balloon inserted into my uterus to try to apply pressure to stop the bleeding, until the pathology results are back and the doctors decide what surgery will be appropriate for me. In the meantime, having had 6 days in hospital, I have been allowed home with the balloon still inside me, and the tubes from the balloon still trailing out.
The doctor who carried out the hysteroscopy has told me that she can’t say for sure what is happening to me until the pathology results are back, but that, in her experience, it looks like I have cancer. My trans vaginal ultra sound also shows an enlarged left ovary. I am also under investigation by the hepatobiliary pancreatic team as I have dilated pancreatic and extra hepatic ducts.
I am feeling really sore and uncomfortable from the balloon (which at times is causing terrible period-like cramping) I am still bleeding quite heavily despite the internal pressure. I know that even if my results come back as being benign I am going to need to have a hysterectomy as this bleeding won’t stop. Also, because of pre existing health conditions, I know this will need to be open/abdominal surgery. Basically they need the histopathology report to know whether they need to remove any further structures like lymph nodes. From my perspective however, having sat in hospital for for the past 6 days, I am even more scared than I already was, as I have now seen how people look when they have had similar surgeries...
While I was in hospital the doctors were chasing my results through histopathology, but they were told the result will take 10 working days- which won’t be up until Thursday next week. The wait is incredibly difficult at times, and at other times I hope it takes as long as possible so I don’t have to face it.
I am trying to keep positive but I have moments of being in pieces, and I don’t know how much of this is exhaustion, how much is natural worry, and how much of it is the result of my hormones being all over the place from the Decapeptyl starting to bring on menopausal effects.
Sorry this isn’t a cheerier introduction!
Hi and welcome back to our little corner of the Online Community. I'm so sorry to read what you have been going through and the uncertainty and constant waiting is so debilitating. Here on this forum you'll find a lovely group of supportive ladies. Some of our journeys here have been easier than yours but any possibility of cancer diagnosis brings all sorts of stress and fears and if anyone can hold your hand and reassure you we will. We're all at the start, in the middle or the end of what can only be described as a roller-coaster ride. The ride no-one wants to get on.
It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username. You could just copy and paste this, your first post.
If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.
It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer I found it invaluable in my journey.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00 8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .
There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
Sending you welcoming hugs, B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
