I never imagined my heavy bleeding could be something serious – now I have a life sentence | The Sun

AFTER being told there was a ‘possibility’ she had womb cancer, Jackie, 50, went numb.

She remembers feeling “completely overwhelmed,” and confused, because surely, if it was only a possibility, then she’d be fine?  

Jackie Boothe, Co-founder and CEO of Empathy Souls Community Interest Company, who lives in Ealing, West London, had suffered irregular bleeding and bleeding after sex for years, as well as polycystic ovaries.

She’d also had abnormal cells in a smear test and had a colposcopy – a test to take a closer look at the cervix – but never needed any additional treatment. 

So it was only when the mum of one started getting heavy bleeding that was stopping her from going to swimming lessons, that she decided to get checked out. 

She says: “It was stopping me from going to the pool every week, and although I could have used tampons, I wasn't feeling comfortable with that and had a feeling I needed to be checked over.”

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But even then, she wasn’t too worried. 

Jackie remembers: “I was concerned the heavy bleeding would be ongoing and inconvenient, but I didn't really believe it could be anything major.

“I had Googled my symptoms and seen posts related to cancer, but I didn't want to believe that could be what was happening to me.”

Jackie booked an appointment to see a doctor and at her initial consultation, a locum doctor was very thorough, looking at her medical history and asking lots of questions about how she was feeling.

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She was referred for a transvaginal ultrasound, which aims to show any changes to the womb, like a thickening of the womb lining.

“Following the scan I was referred for a hysteroscopy – where the inside of your womb is examined – and this revealed the ‘possibility of adenocarcinoma of the uterus’ on 15 March 2016,” she says.
“I couldn’t understand what the diagnosis meant and the term ‘possibility’.

“There was a 20 per cent chance of it really being cancer, which to me meant there was an 80 per cent chance of it being nothing – but the medics didn’t agree.

“I was very numb and confused by the information I was being given, and very upset by the matter-of-fact manner the oncologist consultants gave me my results in, and the immediate presence of a Macmillan nurse specialist. 

“I was completely overwhelmed and requested a second opinion.

“The word 'possibility' remained in my mind and I believed someone else would give me better results and I wouldn't have to have a hysterectomy which was the solution offered at my diagnostic consultation.”

Jackie had come across references to endometrial and uterus (or womb) cancers while researching her symptoms, but “never paid much attention”.

“I just saw that as something more severe than what I was experiencing; the interchanging use of terms is also very confusing,” she says. 

“But on May 12 I underwent a laparoscopic hysterectomy and oophorectomy – where one or both ovaries is removed – and was sent home on May 13 with 52 injections and various other medications and laxatives.

“At the age of 42 I went into surgical menopause – which was never explained.

“What most women have ten years of prep for, I experienced overnight: severe hot flushes, mood swings, itching and irrational thoughts, extreme physical weakness from the surgery, emotional outbursts, anxiety. 

“Culturally, having to explain everything to my family and friends was very difficult as the womb is a very important part of a woman's body and they would not have agreed for its removal, hence why one in four women in my community will die from womb cancer. 

“I had friends advising me to keep it secret. 

“I was distraught to the point that I could not return straight away to working with vulnerable families, which was what I was doing at the time.”

In July 2016, post-op, Jackie was told she was in the 20 per cent; it was womb cancer, but surgeons had caught it in its early stages. 

She was given the all clear: “Because of the surgery I was completely clear and would have a five year follow-up – I cried and laughed at the same time. 

“I made the right choices for me and the consequence is that I am here to share my story. 

“However, it is always looming that I have survived womb cancer, but will my body ever develop another form of cancer? 

“Once you have been diagnosed, it is like a life sentence.”

The diagnosis has changed Jackie’s world: “I no longer allow myself to get stressed over the little things in life.

“I have always been kind and compassionate to others and now I am more kind and compassionate to myself. 

“I no longer work full time and have started a community interest group to support the black afro Caribbean community.”

Signs & symptoms

The NHS says the main symptoms of womb cancer to be aware of include:

  • bleeding or spotting from the vagina after the menopause
  • heavy periods from your vagina that is unusual for you
  • vaginal bleeding between your periods
  • a change to your vaginal discharge

Other symptoms can include:

  • a lump or swelling in your tummy or between your hip bones (pelvis)
  • pain in your lower back or between your hip bones (pelvis)
  • pain during sex
  • blood in your pee

Source: NHS

Jackie hopes that sharing her story in aid of Get Lippy, the gynae cancer campaign from gynae charity The Eve Appeal, will encourage others to watch for any abnormalities in their bleeding cycle and to push for help from medical professionals.

“I wish I had known the main symptoms of womb cancer, and known that even if your smear test is clear, there are other gynaecological illnesses you could have,” she says. 

“I also wish I had a better knowledge of how my gynaecological parts really worked and how bleeding after sex was something to investigate further.

“I want other women to look out for irregular bleeding at any age, to go to the GP for reassurance about any irregular gynae issues, to listen to family and friends but most importantly, to listen to their own bodies and gut feeling about their health. 

“And to pass on all the stories they come across in The Eve Appeal, because if it doesn't resonate with them, it may be a lifeline for a friend. Keep the topic open and keep talking!

“Also, have some lipstick on you.

“When I went for my hysterectomy a woman from a Facebook group told me the most important thing to have in your bag is a lippy.

“I asked her why, because I was so bogged down in the practicalities and seriousness of the procedure, and she simply said, ‘A bit of lippy always makes you feel better’. 

“I always have a bit of lippy with me for that reason and it truly does make you feel better!”

Get Lippy is asking everyone to share their “Younger Selfie” – what they wish they had known about gynae health.

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Visit getlippy.org.uk for more details.

For more information about gynae cancers, head to The Eve Appeal at eveappeal.org.uk.

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