Jane was treated for endometrial cancer in 2022 and became a Community Champion in 2023. She volunteers in the Womb (uterus) cancer forum and across the Online Community. Members often turn to Macmillan for support during the diagnostic process so Jane is sharing her personal experience undergoing diagnostic testing for endometrial cancer, which may provide some reassurance if you have concerning symptoms.
My first symptom was a heavy vaginal bleeding where I passed palm-sized clots. This caused some cramping and lightheadedness. I also felt some lower back pain.
After general checks at A&E, I was seen by a gynaecologist who referred me for further testing, and I was put on the two-week cancer referral pathway. I was unhelpfully told that only ‘one in ten ladies who had post-menopausal bleeding would go on to be diagnosed with Womb cancer but not to worry as it was a good one to get and could be sorted by a quick hysterectomy!’.
I’ve noticed many other ladies in the Womb (uterus) cancer forum present with post-menopausal bleeding and some also have additional symptoms such as pain, feeling a lump, and change in bladder or bowel habits. Postmenopausal bleeding can be caused by different reasons, but it is important to rule out cancer.
The first tests I had involved a couple of ultrasounds. The first was similar to a pregnancy scan, you need to drink a glass of water and not pee for thirty minutes. This means that the bladder is out of the way and a clearer view can be had of the womb and surrounding anatomy. It was a male sonographer, but I had a female Health Care Assistant as a chaperone.
I had to undress from the waist down but was covered with a small paper sheet. The process was painless, a small amount of gel was put on my tummy and the probe moved around to obtain the pictures which I could see on the screen. After this, I was able to use the toilet.
The second part of the ultrasound was a transvaginal untrasound and although invasive and a bit uncomfortable, I did not find it painful. A condom-like cover is put on a large probe and lubrication is applied. It is only the lower part that is inserted. I would say it was probably around fifteen minutes where he moved the probe to different angles while taking the photos. Once the probe was inserted, he focused on the screen. He did check several times during the examination that I was ok and that he could continue.
The next morning, I had a phone call at work from an oncology nurse who explained that something had been seen during the ultrasound. I went in the following day for an endometrial biopsy and this would be done in her outpatients clinic.
I took some pain relief before the procedure as advised. Some medical history was taken and then I was asked to get undressed from the waist down and to lie back on an examination couch with leg supports, and I was covered with a sheet. There was a senior clinical oncology nurse and another gynae nurse present.
First, she did an internal examination where she used two fingers and then her other hand to check for the position of my womb. It was a bit uncomfortable because I was so nervous but wasn’t painful and she was as gentle as she could be.
The next step was to insert a speculum which enabled her to view my cervix to enable the surgical instruments to be passed through. For me the most painful part was when she pushed the instruments through my cervix into my womb.
Once inside my womb she was able to do the Pipelle biopsy where straw like devices pushed through the cervix and a sort of suction process takes endometrial samples. Some ladies do have a hysteroscopy, where a small camera is used to look at the womb lining, however I was unable to have this due to very heavy bleeding. They took 10 samples.
During this time the sensation was a more bearable period like crampy pain. It was something I could cope with. Some ladies on the forum are offered a general anaesthetic if they find it too painful or if their anatomy makes the procedure more difficult.
After the procedure I asked the nurse what she thought, and she said that only the results would confirm whether it was cancer but when pushed she did say it looked grave. She also was concerned enough to have already referred me for a CT scan and had put me “at the top of the list” for the hospital. I was asked how I would like to receive the results and we decided I would be phoned at home.
I did feel quite lightheaded and a bit in shock after the procedure, so it is a good idea to have someone to take you home. I bled a fair amount for around 24 hours and then it settled. I managed the pain with paracetamol. If you do need the procedure, I would suggest taking some thick pads with you as the ones they give you in hospital are pretty basic and can leak. I used nighttime pads for 24 hours. I was advised that if I bled through more than one pad per hour, it was considered a haemorrhage, and I was to get immediate medical help.
I had a contrast CT scan a few days later. This was done for staging the cancer, mine focussed on chest, abdomen and pelvis. I did not have to get undressed as long as I had no metal on me as I was advised to take off jewellery, wear no under wired bras and no zips on trousers. On arrival I was asked again to drink water and wait for thirty minutes. When called to the CT area some paperwork was completed. I laid down on the scanning plinth and had a canula put in the inside of my elbow to enable the contrast to be administered. This was the only painful bit. The actual scan did not take long and when the contrast goes in, I felt a feeling of warmth as it went through my body.
It almost feels like you need a wee and I was warned about this. It was a strange sensation but over in a couple of minutes. I then had to sit in a recovery room with a nurse for around thirty minutes to be monitored in case of an allergic reaction. I did not have an allergic reaction at the time but within 24 hours I developed a raised, red, itchy rash over the whole of my body and felt generally unwell. I was told that this was a rarer occurrence but am not allowed to have further scans using contrast. If you did feel unwell at any point after a scan, then it is a good idea to get checked.
I was phoned by the nurse a few days later who said that unfortunately, they had found endometrial cancer. To be honest, at the time I didn’t feel a lot of emotions as it was expected. I did feel quite numb initially and then after a while, my feelings were a bit up and down. It was at this point that I turned to Macmillan for more information.
Treatment would be surgery initially, and any further treatment would be decided post-operatively. I had a total hysterectomy with bilateral salpingo-oophorectomy four weeks after my initial symptoms. Post-operative results showed a need for chemotherapy and external beam radiotherapy. I continue to be seen for check-ups every twelve weeks.
I would urge anyone who is having any symptoms, particularly any bleeding to get checked. The symptoms may not necessarily be cancer, but it is important to rule it out. If it does turn out to be cancer, then the sooner it is treated the better the outcome.
Call the Macmillan Support Line if you are worried about cancer and need some trusted cancer information. The specialist teams are on hand to provide emotional and practical help 7 days a week from 8am to 8pm on 0808 808 00 00, send an email or use live webchat. There is also the option to post questions in our Ask an Expert section on the Community or join our Womb cancer forum today.
