When Tiffany Summerfield was 19, she went to the doctor with crippling pain. The GP’s advice? Get a boyfriend and get pregnant.
Tiffany – like one in ten women in the UK – suffer from endometriosis – a chronic disease which occurs when the cells in the lining of the uterus grow elsewhere in the body.
Now 31, Tiffany, who is from Cardiff and doesn’t have any children, has revealed has doctors made her feel like a ‘ticking time bomb’ when she was a ‘naive child’.
The condition affects around 1.5 million women across the UK and each month these cells react in the same way as those in the uterus; building up, breaking down and bleeding, but with no way to escape the body.
Since her teenage years, she has been told by medical professionals that she needs to constantly think about her fertility and that she should be having children ‘sooner rather than later’. One doctor even told her to get a boyfriend in order to get pregnant to help her endometriosis.
Tiffany told the Daily Mail: ‘I think it was after the first surgery, so all of this sort of happened within less than a six-month period from having the collapse, then the scan and then the surgery.
‘I remember coming out of surgery and one of the first things that was said to me was “You need to think of your fertility and consider having children sooner rather than later.”
‘At 19, I was like, I’ve literally just come out of school, looking back, how probably emotionally naïve I was and I would have never have coped with having a child of them that age. It was just scary, you just feel like you’re this walking, ticking time bomb.’
A recent investigation by Metro and Endometriosis UK has found that more than three quarters of women with endometriosis have been told to get pregnant by doctors – despite there being no clinical evidence to suggest that pregnancy is a viable long-term solution for the condition.
Tiffany said that every time she goes into a hospital or speaks to the GP, the question they always ask is ‘Do you have children?’
Tiffany Summerfield was told by doctors that she needed to think about fertility aged just 19 (pictured in a hospital gown)
She said she was told from ‘day one’ that she needed to ‘think about your fertility’ – something that has always been in the forefront of her mind over the years, which even ended up affecting her relationships.
‘From a really young age, it was drilled into me [that I have to] think of your fertility and I definitely felt a sense of pressure in my early 20s to think of that, because I thought by the time that I was 25, that my time would have run out but obviously I’ve surpassed that now,’ Tiffany said.
Joanne Hanley, Endometriosis UK Specialist Advisor, said recommending pregnancy as an effective treatment for endometriosis is ‘both inaccurate and misleading’.
She told Femail: ‘Endometriosis is a long-term condition for which there is no cure. During pregnancy, periods generally stop alleviating the symptoms of endometriosis for some. However, others will continue to experience pain during pregnancy.
‘Often symptoms return after giving birth when the menstrual cycle returns. So, to recommend pregnancy as an effective treatment for endometriosis is both inaccurate and misleading.’
She said that it is ‘vital’ that there is a better education and awareness of endometriosis put in place for ‘all healthcare practitioners,’ including GPs, pharmacists, nurses and A&E doctors.
‘Without that, those with the disease will continue to face challenges in accessing the right advice and care at the right time,’ she said.
Tiffany said that every time she goes into a hospital or speaks to the GP, the question they always ask is ‘Do you have children?’
She said: ‘I’m now coming up to 32, and I haven’t had that happen in my life yet. It was even recently, actually, again, where a doctor literally said to me “You should consider finding a boyfriend and having a baby”, as if it’s so simple and it’s a quick fix.
‘Women want to have children because they want to have children, not to try and fix a condition or something that’s wrong.’
Tiffany said the mounting pressure from doctors to get pregnant affected every relationship she entered into in her twenties.
‘The first thing that I thought was, could I have children with this person? Equally at the same time I wanted to go to university and live my life like a normal teenager like someone who was in their 20s,’ she said. ‘It’s constantly at the forefront of your mind.’
Tiffany said she had always struggled with heavy periods ‘from day one’ and remembers being 14 years old and finding out that she had bled through her school uniform.
She struggled with extremely heavy bleeding throughout her teenage years, but grew up thinking it was normal because she was only taught the basics of the menstrual cycle at school.
However, the situation came to a head when she bled through her pyjamas and ended up collapsing on the kitchen floor from the intense pain.
‘Luckily, my mum was at home,’ Tiffany said. ‘She called an ambulance but they basically brushed it off, told me to take paracetamol and said that it was just a normal period.
‘Because I was bleeding, it was almost like an instant decision that they just said “Oh, well, it’s just normal, you’re on a period”, that was very dismissive.’
Tiffany was never taken to hospital by the paramedics to get checked over, despite her ‘writhing around in pain’ on the sofa.
Instead, her GP requested a scan after finding out that she had fainted, which was the ‘tip of the iceberg’ of what was to come.
A couple of months later, it showed that Tiffany had a 5cm blood-filled cyst on her left ovary, which had twisted itself, causing her to be in agony most days.
The condition’s cause is unknown but may be genetic, related to problems with the immune system or exposure to chemicals. Current treatments focus on pain relief and improving quality of life, which may include surgery or hormone treatment.
Due to her intense endometriosis symptoms, she had a chemically induced menopause aged 21, which meant that she suffered with hit flushes, hair loss and weight gain.
The nurse had her most recent surgery four months ago and chose to have her left ovary and tube removed as the same pain kept reoccurring, causing her a lot of discomfort.
She said: ‘I was told by two different surgeons weeks before surgery and the day of “Are you absolutely certain that you want this removed?” It was almost like they were minimizing my choice, my decision.
‘One of the male surgeons said “Ethically, if it’s okay, and there’s nothing wrong with the tube and the ovary, I can’t actually remove it, we’ll have to go back in again.”
‘I said “But I’m telling you now, this is my choice, and I want it gone. I do not want to have to wake up and go into another surgery.” Why does someone who has no idea what this feels like have an upper hand over my choice and my body?’
Tiffany Summerfield said she had her first surgery to remove a blood-filled cyst when she was just 19
Tiffany said it was later found that the fallopian tube and the ovary in that area were ‘dying anyway’, which was the biggest cause of her suffering.
As she was told that having the ‘whole body’ condition could affect her chances of getting pregnant, Tiffany said she has accepted that she may never conceive naturally.
As well as endometriosis, Tiffany also has adenomyosis, a condition where the inner uterine lining tissue grows into the muscular wall of the uterus, which can also cause difficulty getting pregnant.
‘I’ve only got one working ovary and tube, and with the adenomyosis, it makes any potential pregnancy very difficult to be a healthy one, it puts you at high risk of miscarriages and you may not conceive naturally,’ she said. ‘I’ve kind of accepted the fact that it may not happen naturally, but I know there’s other ways out there.’
When asked how it makes her feel to hear that girls as young as 17 are being told to get pregnant by medical professionals, Tiffany said: ‘It’s disgusting, I was a child myself and they’re even younger, it’s abhorrent, it’s just horrible to think that your only way out of this is to go through [childbirth]. I mean, it’s a traumatic experience.
‘It’s disgusting. It really is disgusting, and if that was my daughter in the future who was being told that, believe me, my lid would have blown off in that doctor’s office, I can tell you that now.’
Tiffany – who is a volunteer for Endometriosis UK – has had five surgeries since the age of 19 to remove cysts, lesions and part of her fallopian tube and ovary.
While she has suffered with physical symptoms for much of her lifetime, it has also caused her mental distress after she was let go from her job for taking too many sick days over the past two years.
‘As a healthcare professional, I have been dismissed from a role because of my absences and how I was struggling with my pain,’ she said.
‘I was still struggling with the pain and everything in-between and it was hard to manage my job, with it being so physically demanding and long hours. Unfortunately, when you have certain absences, they tally up and go against your record and things and just accrued.
‘I was dismissed from my role because of how many absences I’d had. And even though I had tried to appeal it with my union, unfortunately, they stuck with the decision. I think it’s quite a big thing that a lot of people face, trying to stay in work and keep jobs when they have these chronic conditions.’
Tiffany said she felt as though she was being ‘discriminated against’ for her condition, which she has ‘no control over’.
However, she has since found a company in Cardiff that has an endometriosis policy, which means that an absence relating to your condition does not get marked on the system – something she described as ‘really reassuring.’
Lynsey Turner, from Southampton, was 26 years old when she was diagnosed with endometriosis. She was also told that getting pregnant could resolve her condition.
After having two sons, she says her symptoms did not improve, as she has spent much of her adult life ‘as a mother suffering with awful periods’.
The online coach, 49, was trying for a baby with her husband in her mid-twenties when she decided to investigate why they had not been able to conceive successfully.
She then had a laparoscopy through her husband’s private medical insurance and removed as many cysts as they could; however, doctors found she had lesions attached to her veins, which they couldn’t remove.
‘Nearly 20 years later, the lesions are still there to this day,’ she said.
‘We had the operation, they told us the outcome and they said it could resolve itself if I became pregnant, which isn’t the case,’ she said. ‘I’ve spent most of my adult life as a mother suffering with awful periods.
Lynsey Turner (pictured) found out that she had endometriosis after she struggled to pregnant aged 26
‘There is no product out there that can cope with the periods I have. It’s things that people are so embarrassed to talk about and stops people from seeking help. For example, passing a clot the size of the palm of your hand, that is not normal.
‘We often go to the doctors and they go “Oh well, it’s normal to have painful periods and heavy periods. The only thing you can have is contraception that might alleviate it a little bit.” To me, it’s not really good enough.’
Lynsey tried going on the coil to help her symptoms; however, her body rejected it. She then decided to have an ablation, which is where medics laser off the lining of her womb.
This helped ease her painful symptoms, adding that she was finally able to ‘enjoy sex again’.
However, her endometriosis has meant that she has often found herself in difficult situations with extremely heavy periods.
Lynsey said: ‘I’ve been in situations where I’ve been shopping, I’ve had [a situation] where you just flood. There is nothing you can do to stop it. And I remember very clearly, I’d been to Sainsbury’s, I’d done my shopping, I’d taken the shop into the car, and then, whoosh, it just all came away.
‘And I couldn’t get into the car because I’d have marked the seats, so I had to go back into Sainsbury’s, buy pants and trousers, so that I could change and get home comfortably, without having blood everywhere. That’s how severe these periods are.’
Reacting to doctors telling young girls to get pregnant to help with the chronic pain, she said: ‘The answer to get pregnant is not the answer because it doesn’t make it go away, endometriosis is a lifelong condition, it’s not something where you can just get pregnant and recover from. It is something that you are going to live with for the rest of your life.
‘It’s not something to be taken lightly and should never be considered as a medical intervention. It doesn’t make any sense whatsoever. The answer is give them the operations and medication that they need and also the government needs to fund more research into it.’
She called the advice ‘absolutely ridiculous’, saying that those as young as 17 have their ‘whole lives ahead of them’.
Lynsey said: ‘Having a baby is a huge commitment. Pregnancy doesn’t resolve this condition, it is a condition you have to manage pre and post pregnancy.
Lynsey (pictured) called advice from doctors to get pregnant to ease endometriosis symptoms ‘absolutely ridiculous’
‘If you have endometriosis and you go and have a baby and it doesn’t resolve your problem, you are then trying to raise a child while running on empty constantly because you are suffering so badly from painful periods and blood loss. It’s not the answer.’
Lynsey fell pregnant for the first time but miscarried after a few months. She then fell pregnant a second time and described her experience as ‘fairly straightforward’ and ‘normal’.
However, when she was carrying her second born child, Lynsey said she was in ‘a lot more pain’, but is unsure whether her condition had anything to do with it.
While endometriosis was referred to as a ‘womb condition’ back in 2002, Lynsey says it is now called a ‘whole body condition’.
Along with navigating herself through the health condition, Lynsey has also suffered with anaemia for much of her adult life.
She wasn’t able to function, she lost her memory and her hair, had restless legs and became breathless when walking up the stairs.
‘I had so many symptoms until it got to the point where [I thought] the doctor wouldn’t believe me, so I took my husband with me for them to take me seriously,’ she said. ‘They did another blood test and found my iron levels were down to four.’
Lynsey was then given a ‘life-changing’ iron transfusion, which lasted two years, and she was able to get back into her daily routine after experiencing mass fatigue.
She believes that there is ‘100 per cent’ misogyny within women’s healthcare and often sees it first-hand after becoming a wellbeing coach.
Her business, Lynsey Turner Coaching, helps women who have autoimmune, hormonal and neurodivergency conditions feel seen and heard as they are often ‘so misunderstood’.
She added: ‘That field is so misunderstood, there’s so much misinformation and women often feel gaslit when they go to the doctors. They don’t have the confidence to challenge a medical professional.’
Although Ashita Landge, 30, was not told that getting pregnant would ease her symptoms, medics did say she should consider her fertility options because of her ‘biological clock’, leaving her feeling anxious.
She was diagnosed with endometriosis last year, aged 29, and she suddenly found herself being faced with ‘life-altering decisions’.
The ABA tutor and therapist said she remembers experiencing painful periods in her mid-teens that were far heavier than any of her friends; however, doctors reassured her by saying that each body was different and ‘pain tolerance varies’.
‘Around 17 or 18, my pain became unbearable, and I had to go to the hospital. It felt frightening and overwhelming – especially because I sensed this was only the beginning of something bigger,’ she said.
Ashita Landge, 30, was told by doctors that she should consider her fertility options because of her ‘biological clock’, leaving her feeling anxious
Around 11 years after initially going to the hospital in agony, she got her diagnosis and said she wouldn’t describe her experience with the NHS as ‘wholly positive or negative’.
She said: ‘The NHS did provide me with options and explained my condition clearly, which gave me some clarity. However, the delays in diagnosis and the fact that I always had to take the lead in following up on my care were frustrating and felt like a negative aspect of the journey.’
She was then told that she needed to consider pregnancy because of her ‘biological clock’ and the ‘severity of my condition’.
Ashita said: ‘Honestly, it turned my world upside down. Suddenly, I was faced with life-altering decisions – from getting married, to finding a job that supported my health, to even thinking seriously about fertility – at a time I wasn’t expecting to.
‘It made me incredibly anxious about my health, and my anxiety has definitely heightened since then.
‘In the past year, I’ve consulted 3–4 doctors in different countries, mainly in the UK. Almost all of them first encouraged me to preserve my fertility through egg freezing, since I was single at the time and had no immediate plans for pregnancy.
‘After I got married, doctors then told me not to delay pregnancy, warning that otherwise I would likely need IVF.’
Ashita questioned why there was no focus on improving her quality of life, adding: ‘What about women who never want to be pregnant? What about women who haven’t thought about it yet? What about women who already have children but are still suffering?’
Joanne Hanley, Endometriosis UK Specialist Advisor, said: ‘Endometriosis UK often hears that patients are advised to “get pregnant” by healthcare practitioners. For many this medical advice is insensitive and not appropriate, especially if aimed at individuals who are struggling with their fertility, or those not wanting to have children, either ever or at that time.
‘Advice like this is unhelpful and can add unnecessary pressure. Endometriosis UK encourages health care practitioners to have healthy discussions around fertility and pregnancy in a sensitive and appropriate manner dependant on the individual patient’s wishes.’
Joanne said that there is a ‘shocking’ lack of awareness and understanding of endometriosis among healthcare practitioners.
Ashita’s experience with the chronic disease has impacted all areas of her life and she often had to miss school and university classes due to the pain.
She has been rushed to hospital for immediate pain relief, which resulted in her missing work.
Like Tiffany, Ashita faced issues at her job with the amount of sick leave she took because of her endometriosis.
‘I was flagged for taking sick leave during probation at a new job, and ultimately, I was told that conceiving a child would be difficult for me,’ she said. ‘To put it simply, no part of my experience with endometriosis has been positive.’
Ashita has also been belittled by doctors who have dismissed her endometriosis symptoms and were told they were ‘normal’.
‘I do believe women experience misogyny in healthcare,’ she said. ‘Personally, while I’ve been fortunate to work in women-centred organisations, I have also had experiences where doctors who lacked expertise in endometriosis dismissed my pain.
‘I was told that painful periods were “normal” and was advised to just take painkillers. When I explained that I seemed very different from other women in my family, one doctor even laughed and told me it wasn’t such a big challenge. Those experiences left me feeling dismissed and belittled.’
Endometriosis UK is urging the government to improve mandatory training for all health practitioners on menstrual health conditions, such as endometriosis, to ensure that that they are better equipped to recognise the signs and symptoms. They can therefore put those suffering with the condition on the right pathway for treatment and support.
Six months ago, the she had a laparoscopic surgery in her home country, which has given her ‘significant relief’ and she has been ‘pain-free’ ever since.
‘Since my surgery, my symptoms have improved significantly,’ she said. ‘I feel like I finally have a better quality of life, and I’m able to work without breaks or the constant anxiety of pain.’
