Every year, around 3,000 new cases of cervical cancer are reported in the UK. Despite approximately 99.8 per cent of cases being preventable, there are still many misconceptions surrounding cervical cancer.
Cervical Cancer Prevention Week, an annual campaign led by Jo’s Cervical Cancer Trust, runs from Monday 20 to Sunday 26 January. Each day, The Independent will be publishing content to help raise awareness and dispel myths regarding cervical cancer. Although cervical cancer can affect anyone with a cervix the term ‘women‘ will be used here for brevity.
While individuals who have not been affected by the condition may have a basic understanding of what it entails, they may not comprehend the true scope the cancer can have, with some treatments causing infertility and difficulty having sex.
“For women who have been diagnosed with cervical cancer, fears about the impact of treatment on their ability to have children are common,” says Rebecca Shoosmith, head of support services at Jo’s Cervical Cancer Trust.
“Many also find it impacts their sex life. This can result from physical changes caused by treatment, psychological feelings such as stress and fear, as well as changes to relationships.”
Five women who were diagnosed with cervical cancer have spoken to The Independent about how their treatments have affected their fertility and sex lives, detailing the physical and mental impact of their experiences.
Claire, 39, a retail manager from Essex
Around four years ago, Claire was diagnosed with cervical cancer after exhibiting symptoms including back pain and spotting in between periods. She had never had a smear test done, having avoided them due to feelings of fear and embarrassment. Within three months, Claire had to undergo a hysterectomy, meaning she would not be able to conceive any more children in addition to her two daughters. Her diagnosis and treatment had a huge impact on her self-esteem, at times making her “feel less of a woman”.
“I avoided my smear test. I didn’t go to them. I put the letters in the drawer. Ridiculous, to be honest. I was really nervous about having them done,” Claire says. “I thought, ‘I’m young. It’s never going to happen to me I’ll be fine.’ It’s a worry that I thought like that.”
After years of ignoring the letters reminding her to go for a smear test on a three-year basis, Claire realised that something unusual was occurring to her body when she started to experience pain in her lower back and abdomen, spotting in between periods and bleeding after sex.
I thought, ‘I’m young. It’s never going to happen to me I’ll be fine.’ It’s a worry that I thought like that
Two weeks after visiting a doctor, Claire was referred to a hospital, where she underwent her first smear test. The smear test confirmed that she had cervical cancer, a condition that she previously knew very little of.
Claire’s daughters were 15 and six years old at the time of her diagnosis. With such a significant age gap between the girls, the retail manager says she would have liked to have given birth to more children. However, the reality that she needed to have a hysterectomy – the removal of the uterus – meant this was no longer a possibility.
“I was devastated. I’m such a maternal person,” she states. “The choice was taken away from me.”
Following her treatment, the 39-year-old has found that some people’s line of questioning has been “really insensitive”, failing to take into account the fact that the decision to conceive more children is no longer one she is able to make for herself.
“‘You’ve had two children so it doesn’t matter.’ It does matter. It matters massively,” Claire says, providing an example of one of the statements she has heard before. “I find that really insensitive. It was my decision, and it was taken away.”
In addition to the physical impact of her treatment, which Claire says has “completely changed” the shape of her body, her ordeal has also had a tremendous effect on her mental wellbeing.
“For a little while you feel less of a woman. I found myself feeling very unattractive. It changed me completely as a person,” she says, adding that she feels “very self-conscious” by the scars left from the procedure.
Claire hopes that by encouraging more conversations about cervical cancer, especially from a young age, it will no longer be perceived as a “taboo” subject.
Hannah, 38, a part-time creative account manager from Luton
In 2012, following a routine smear test, Hannah was diagnosed with cervical cancer on the eve of her 31st birthday. She had experienced no symptoms for the condition, discovering later that her previous smear test in 2009 mistakenly missed that she already had cancer in her cervix. Meeting certain criteria meant that Hannah was able to undergo a radical trachelectomy, as opposed to a hysterectomy, which involved the removal of her cervix. Two months before her first surgery, Hannah met a man who would later become her husband, and with whom she has since had two children.
While smear tests are one of the most effective ways of protecting against cervical cancer, they are “not always 100 per cent foolproof”, Hannah states. The part-time creative manager is one of a small percentage of women whose cervical cancer was not detected by her routine screening, an occurrence that she says highlights why it is “mega, mega, mega important to never miss a smear”.
After the smear test that identified the abnormal cells, Hannah visited a specialist doctor, undergoing a colposcopy so that a sample of tissue could be extracted. The sample confirmed that she had cervical cancer, and led her to believe that she would have to have a hysterectomy to treat the condition.
You can have children without having a cervix
“Before elective surgery, you go in knowing it’ll be one outcome or the other. So we went in thinking I was going to be having a hysterectomy,” Hannah explains. “With all the scans and stuff they can only tell us to a certain extent until they’re actually really in there looking at everything.”
Hannah describes herself as a “glass half empty kind of person”, and so she went into the surgery believing she would not be able to conceive children when it was over. Her now-husband, on the other hand, believed there was a chance of a different outcome, a prediction that turned out to be true.
During surgery, the doctors were able to perform a radical trachelectomy, removing Hannah’s cervix and the upper third of her vagina. The procedure was the first of its kind to be conducted at the hospital where Hannah was being treated.
Throughout Hannah’s treatment, she was still in the early stages of a relationship. Despite her partner’s aversion to medical environments – “he’s very phobic of needles, he doesn’t like hospitals and he doesn’t like blood” – Hannah recognised that he was a “good one” when he remained by her side.
“I thought well you know what, if he is willing to come to hospital with me and hold my hand going through all these various procedures, and the fact that I was going to face a hysterectomy at one point, in my head I thought, ‘Well, he’s a keeper then, isn’t he’.”
Part of Hannah’s surgery involved having a “permanent stitch”, called a transabdominal cerclage. The transabdominal cerclage, she explains, “basically closed off” her womb. This meant that while she would be unable to give birth to a baby through a vaginal delivery, she would still be able to conceive and give birth via Caesarean section.
“You can have children without having a cervix,” says Hannah, whose two children are aged one and four.
“I do like to think there’s a bit of a shining light and a little bit of hope for women who have had a cancer diagnosis to go on and have children. But I don’t want to give anyone false hope, because there is more of a chance you’re going to face a hysterectomy if you have cervical cancer.”
For Hannah, she hasn’t experienced any change to her sex life since undergoing treatment for cancer, explaining that for her, the only changes are “internal”.
Stressing the importance of going for smear tests, Hannah affirms that there are “very few physical procedures that are nice to go to”. However, in her opinion, people should view procedures such as smear tests and prostate checks “as routine as going to the dentist”.
Maria, 34, a kitchen and bathroom designer from Pembrokeshire, Wales
When she was 25 years old, a smear test discovered that Maria had abnormal cells on her cervix. She was later informed that she had a tumour on her cervix and would have to undergo a full hysterectomy to treat cervical cancer. Maria, whose son was eight years old at the time of her diagnosis, was given the option to freeze her eggs, but chose not to as it would have delayed her treatments. Maria says her body confidence “has definitely plummeted” as a result of her procedures, while the removal of the top part of her vagina has impacted her sex life.
Prior to being diagnosed with cervical cancer, Maria says her knowledge of the condition was “very, very limited”. “I knew that it was a cancer and that it was within the female genital organs, and that was probably about it,” she says. “I didn’t know the causes of it. I didn’t know anything.”
The kitchen and bathroom designer explains that she decided to have a smear test when she began experiencing pain and irregular bleeding. Having had her first smear test at 20, as was routine in Wales, she had waited slightly longer than the recommended three years before having her next one.
Having been diagnosed on 7 October, on 18 November – within a matter of weeks – she had undergone a hysterectomy, which not only removed her womb and the top part of her vagina, but also resulted in her going through the menopause in her mid-twenties.
One of my consultants said to me, ‘You’ve got to think of the child you have, not the ones you may have in the future’
Before the procedure, Maria was given between 24 and 36 hours in which to decide whether or not to freeze her eggs.
“One of my consultants very wisely said to me, ‘You’ve got to think of the child you have, not the ones you may have in the future’. And that’s always stuck with me,” she says. It’s one of those little phrases that I’ve always looked back on and thought, ‘Yeah, I made the right decision’.”
Maria adds that her decision “was purely what was right” for her and her son, especially considering she did not have a partner at the time.
“There’s so many options these days, there’s IVF, surrogacy, adoption, fostering,” she says. “Just because you can’t personally have a child doesn’t mean you can’t be a parent.”
While Maria states she is “not the most maternal person”, she can understand that if a person without children had been in the same situation as her, they may have opted to have their eggs frozen prior to treatment.
As part of her treatment, the then-25-year-old had to go through chemotherapy, radiotherapy and brachytherapy. Brachytherapy is a procedure that involves radioactive material being placed inside the body in order to combat cancerous tumours. It is implemented predominantly to treat cervical, womb and prostate cancer, Macmillan Cancer Support explains.
The insertion of radioactive rods resulted in the “complete closing up” of Maria’s vagina. This, and the fact that her hysterectomy caused her to have a “shortened vagina”, has had an impact on her ability to have sex with partners of a certain size.
“I’ve got a restriction on how big I can have,” she explains. “I use what they call dilators, which are all different lengths and girths, for about six to eight weeks after brachytherapy. They’re the sort of shape and size of a test tube, but white plastic.
“They’re not the most pleasant thing to have to do, but if it meant that later on in life I could have a normal sex life, if there is such a thing, then yeah you have to kind of go with it and do it.”
Amanda, 29, a veterinary receptionist from the West Midlands
In March 2018, a biopsy for a suspected polyp revealed that Amanda had a cancerous tumour. She did not know a great deal about smear tests or cervical cancer, having previously set aside her invitation for a screening “through fear of the unknown and embarrassment”. Having undergone five weeks of radiotherapy and chemotherapy followed by three weeks of brachytherapy, Amanda then had an operation to remove potentially cancerous lymph nodes from her pelvis. While she previously said that she never wanted children, no longer having the ability to conceive “completely changed” how she felt.
“I feel somewhat lucky in a sense that I had never really wanted children,” Amanda says. “So to a woman who only dreams of having a family, it must be heartbreaking. But having said that, it has been extremely difficult.”
Having been 27 when she was diagnosed with cervical cancer, the now 29-year-old says that it has become difficult for her to watch friends settle down and have families knowing that she is no longer able to become pregnant.
“Emotionally, I felt I had failed as a woman and lost all purpose. It was a very dark time,” Amanda states as she reminisces about the time of her diagnosis.
It’s hard to watch others start families knowing that it will never happen to you
Despite having previously not wanted to have children, Amanda explains that she receives insensitive remarks from other people on the topic “all the time”.
“People ask me if I have children or when I’m having children and I try to play it off with, ‘No, I don’t want kids’. But every so often the person asking won’t accept that answer and keeps going on and I have no choice but to tell them that I can’t have children, which then makes them feel guilty for asking.”
One particularly hard-hitting moment came a few weeks ago, when a woman in Amanda’s workplace stated that a “woman’s sole purpose in life is to reproduce”. “I literally felt like I was hit with a bus,” Amanda summarises.
The treatments Amanda underwent have had a long-lasting effect on various aspects of her life, one of the main areas being her sex life.
When she first discovered she had cervical cancer, she felt a “tremendous amount of guilt” towards her partner, as she thought she had “taken away his chances of being a father”.
Furthermore, the side effects of the brachytherapy meant Amanda had to use dilators to try to stretch her vagina., due to the scar tissue caused by the treatment.
“The dilators are cold, hard plastic tubes. Using them felt so medical that that was all I could associate sexual contact with,” Amanda explains.
“Having numerous doctors, oncologists, nurses and, at one point, a room full of students prodding around down there really is enough to put you off sex for a long time. And also, I was scared to have sex, as when I tried it was painful.”
While Amanda feels as though she is “old before her time”, she also senses her mental and physical confidence growing every day.
“I’m starting counselling soon, so I’m hopeful that will help me and I can start feeling like a 29-year-old woman again,” she states.
“If you are one of the unfortunate ones like me and have been told you will be infertile, just remember that having children does not define you as a woman. We can achieve so many great things without being a mother.”
Mary, 46, a writer and part-time Morrisons employee from Maidstone, Kent
A decade ago, the results of a routine smear test informed Mary that she had cervical cancer. She had to undergo a radical hysterectomy, in addition to chemotherapy and radiotherapy, which caused vaginal scarring. Three years after her cervical cancer diagnosis, Mary’s bowel stopped working and she had to have an emergency colostomy bag. While initially intercourse with her husband caused her some pain, the couple of 26 years were able to improve their sex life with the guidance of Mary’s consultant. She and her husband have a 25-year-old son.
While some women who are diagnosed with cervical cancer may not have much prior knowledge about the condition, this was not the case for Mary. Having had pre-cancerous cells identified in her cervix previously, and having supported a friend who underwent treatment for pre-cancerous cells, she says she was “quite well-informed” about cervical cancer before her diagnosis in 2009.
Following her diagnosis, Mary was informed that she had to have a hysterectomy, removing her ovaries, a section of tissue around her pelvis, the top of her vagina, 27 lymph nodes in her thighs, her cervix and her womb, all through keyhole surgery.
She and her husband, to whom she has been married for 12 years, had already decided they did not want any more children, as their son was 15 years old at the time. “The thought of freezing my eggs or finding a surrogate was too much to deal with!” Mary says.
Cervical cancer will affect your sex life and fertility, but it needn’t define you
However, Mary was concerned that her sex life with her husband would be impacted by her treatment.
“My hubby wasn’t bothered. He just wanted me well,” she recalls. “During treatment we had lots of cuddles. I was too ill for anything else. He would help me bathe and looked after me.”
In the years following Mary’s treatment, she experienced a loss in her sex drive, in addition to feeling sore and dry in her vagina. She was also on HRT (hormone replacement therapy) and had to use dilators in order to try and stop the vaginal scarring caused by her procedures.
“Using an inflatable dildo helped immensely – hubby found one online – it was softer and more flexible,” she states. “In fact, as a couple we are trying to find or create a dildo specifically for women who are suffering from vaginal scarring.”
Having been told that the radiotherapy would likely cause scarring “that could get worse”, having sex with her husband left Mary in “immense pain”, as she explains that it felt as though she had a “huge graze” inside of her.
Her consultant recommended using lubricant, and Macmillan nurses advised that Mary and her husband find water-based lube. Since then, Mary says she and her husband have a “great sex life”.
“It’s a lot to take in when you’re told you have cancer and then told you may experience more symptoms and problems,” Mary says.
“Keep talking and take time to find out what’s right for you.”