The Royal College of Obstetricians and Gynaecologists (RCOG) are warning that long NHS waiting times for the treatment of conditions such as endometriosis, fibroids (non-cancerous growths that develop in or around the womb) and ovarian cysts are seriously impacting women and people with wombs’ fertility and plans to have children.
The RCOG has exclusively told Refinery29 UK that those waiting for a referral for treatment with gynaecological conditions risk infertility because of the long lead times.
As of January 2022, over 180,000 women are waiting over 18 weeks from referral to treatment in gynaecology – that was a 383% increase on 2020.
Dr Edward Morris, President of the Royal College of Obstetricians and Gynaecologists, said that this huge jump is in part because of the pandemic and, in part, because gynaecology waiting times have been a growing problem in recent years. Now, it is clearly reaching a crisis point.
The impact on women’s lives cannot be underestimated. For example, 34-year-old Sophia* lives just outside of London and has been living with endometriosis for a decade. She describes living with heavy bleeding and pain which, she says, is “worse than being in labour” and she would know as a mother of one. When Sophia first went to the doctors about her pain, she says she was sent away with painkillers without being referred for a scan by her GP.
The pain Sophia experiences as a result of endometriosis has become so bad that she has had to stop working. In the first lockdown of 2020, Sophia started trying for a second child with her partner. “Every month that I didn’t become pregnant, I felt like I wasn’t being helped for my pain and I knew something was going on,” she says. “I found a group online called Nancy’s Nook, which had a list of endometriosis specialists and I paid privately to go for a scan. I saw a specialist who confirmed that I had adenomyosis and endometriosis.”
In 2021, Sophia finally had excision surgery (an operation to cut out all the visible endometriotic tissue) on the NHS following the results of her private scan. This appointment was cancelled once before she finally made it onto the operating table.
“They found and removed a large endometrial polyp as well as excision of endometriosis. The polyp was causing me so much pain on top of the endometriosis, and I would never have been able to get pregnant without it being removed,” she continues. A biopsy was taken of the polyp to make sure it was not cancerous.
The results of this surgery made Sophia feel vindicated – because she had always known something was seriously wrong – but also, angry.
“Mentally, I didn’t understand why I wasn’t getting pregnant,” she says. “Now I feel like I have wasted nearly two years of my fertility, I’ve had to give up my job because of pain, and I felt like I had no control over the situation.”
To rub salt into the wound, Sophia says that she was told that she would hear back about whether the polyp was cancerous or concerning within two weeks. However, she actually waited for 11 weeks.
“I got a phone call to say they found abnormal cells and would need another operation,” she says. “For a few weeks I thought I had cancer.” Luckily, she did not. But, nonetheless, the wait was torturous for her.
Worrying about the possibility of cancer briefly superseded Sophia’s fertility concerns. She was then referred to a fertility clinic on the NHS, with an appointment date in August 2022.
I feel like I have wasted nearly two years of my fertility, I’ve had to give up my job because of pain, and I felt like I had no control over the situation.
Sophia*, 34, london
“I felt at a loss [because that was so far away],” Sophia says. “So I paid for another private appointment in February 2022, in the hope that I could discuss my fertility and my pain. The specialist told me I did have adenomyosis, and I also had a haemorrhaged cyst on an ovary, which was causing the pain. I was advised to focus on getting pregnant, and to get back in touch with the pain clinic, who I had seen in late 2020. They told me to take morphine but with a young daughter to look after, this is not a long-term solution.”
Over the years, Sophia says she has spent more than £1,500 on private medical appointments. Before she was able to get an NHS referral for excision surgery, she was considering having it done privately but couldn’t find the funds for the procedure which would have cost her between £10,000 and £15,000.
Sadly, Sophia’s story is not uncommon.
Sabrina is a pharmacist in her early 30s living in Hertfordshire. She has been on the waiting list to see a gynaecologist for endometriosis (cysts which form on the ovaries) for over a year, which is delaying her access to fertility treatment.
“After I got married in 2018, my husband and I started trying for a baby. After a while we started to become a little concerned that we hadn’t yet got pregnant,” she says. “After a couple of years, and a conversation with our GP who frustratingly just told us to keep trying, we decided to get some tests done at a private fertility clinic. A scan identified what looked like cysts in my ovaries.”
“The scan prompted my GP to refer me to see a gynaecologist, who I waited three or four months to see as an initial appointment, but didn’t really speak to me about my cysts and simply referred me on to see a fertility specialist. After waiting a while longer, our fertility referral was refused by the team because of a concern that they didn’t know enough about the endometrial cysts and wouldn’t be able to move forward with treatment until we knew if they needed to be removed,” she continues.
“I’m now stuck waiting to see a gynaecologist once again to investigate and decide on a course of action for my cysts, and until then fertility treatment is on pause,” Sabrina concludes. “It just makes you constantly anxious with all of the waiting. I’m so conscious of time, and the fact my fertility will be impacted the longer I wait. This whole process has already taken well over a year, after two years of trying to conceive. On top of all of this, the pain from the cysts continues to worsen as time goes on.”
In total Sabrina says that she and her husband have now spent around £10,000 from their savings on private health treatments including egg freezing which she wasn’t eligible for on the NHS until she had seen the gynaecologist for her cysts.
“How much chasing and calling can you do,” Sabrina says. “I understand that there are waits for everything but this is impacting everything. It would be nice just to know even when to expect an appointment so we had a timeline.”
This whole process has already taken well over a year, after two years of trying to conceive. On top of all of this, the pain from the cysts continues to worsen as time goes on.
Sabrina, Hertfordshire
Likewise Carina, who lives in Wales and in her 30s, has been trying to access treatment for her fibroids since late 2016. After finally scheduling in a small surgery in June 2020, she was left not knowing the results. “I didn’t have any idea if the surgery had worked or what was going on by March 2021”, she tells R29 UK, “but I finally managed to get an appointment in June. In that consultation I asked if I could be put on the waiting list to have further surgery to get the rest of the fibroids out. And I’m still waiting.”
The delays have had a huge impact on her fertility and her wellbeing. While she is planning on IVF she can’t yet access it. In the meantime, she says that “the delay to the surgery means the fibroids have definitely grown. Before I’d only get bloated during my periods but now I’m bloated constantly. There isn’t a day where I’m not bloated and looking pregnant. It’s ironic really, isn’t it?”
In England, 457,000 women and people with wombs were on gynaecology waiting lists as of January 2022. The number of women waiting over 18 weeks from referral to treatment had already reached nearly 47,000 before the start of the pandemic in February 2020. Now the national average waiting time to see a gynaecologist in England is now 13.3 weeks. That has gone up since April 2019, when it was 6.9 weeks.
The number of women waiting more than a year in February 2020 was 66. As of January 2022, over 24,800 women have been waiting over a year. At its peak, the number of women waiting over a year reached a high of over 26,000 in March 2021.
This means that the number of women waiting over a year for treatment has gone from less than one in 1,000 women on the waiting list before the pandemic to more than one in 20.
Data compiled by the RCOG and LCP (to build the NHS waiting list tracker) shows that these waiting times are longer than those for many other health specialties: from cardiology and gastroenterology, to general internal medicine.
According to the NHS, the maximum waiting time for non-urgent, consultant-led treatments should be 18 weeks.
This is concerning, and not only because women are being left in pain like Sophia. The potential impact on fertility of many gynaecological conditions remaining untreated for longer is significant, and this is a concern raised by the RCOG’s members.
The RCOG’s members say they are seeing a number of women with larger ovarian cysts that have grown while they were on a waiting list, with worsening symptoms as a result. Some also said they were seeing more women with ovarian cysts in emergency settings with acute torsion or ruptured cysts. Ovarian torsion can risk the survival of an ovary and if it is not identified and treated quickly can result in loss of that ovary. The surgery to remove ovarian cysts is minimal access wherever possible, which helps make recovery quicker, but where cysts have become too large then open surgery is sometimes needed, making recovery longer. There is also a risk the whole ovary may be lost, whereas with a smaller cyst it could have been preserved, having an impact on long term reproductive health and fertility.
The way that we assess priority needs to be looked at, because there is a bit of a gender bias and it’s reflective of society as a whole.
Dr Fatima Husain, consultant gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists.
On endometriosis, the RCOG’s members said that it is also vital to consider how treatment options are likely to change with progression of disease, with more invasive and complex surgery becoming more necessary with advanced stages of endometriosis. They raised further concerns that it is the women with more complex and advanced cases of endometriosis, where longer and more complicated inpatient surgery is required, who are waiting the longest for surgery.
Emma Cox, the CEO of Endometriosis UK – the leading UK charity dedicated to providing information and support to those with endometriosis – told R29 UK: “Endometriosis is a slightly unusual disease because it impacts people differently, but it may progress for some people meaning that what would have been relatively minor surgery two years ago could turn into much more major surgery.”
“Then there are the impacts on people who then can’t hold down a job because they’re in too much pain or they’re missing education,” Cox added. “Endometriosis has a physical effect but it also has a long term impact on a person’s life outcome as well. If people don’t know when they’re going to get help or when they’re going to get their surgery, they’re living in pain, they can’t do things, and they might be worried about work and about finances. It has an impact on all aspects of someone’s life.”
Beyond all of these very real consequences of delayed treatment, there is clear evidence that some gynaecological conditions impact fertility, including endometriosis and fibroids. Plus fertility decreases with age, so many women who are waiting for treatment prior to trying to conceive will have less chance of getting pregnant because of their long wait for treatment.
Dr Fatima Husain, consultant gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists told R29 UK that she feels at a loss. As she sees it, gynaecological health is not being prioritised by the NHS.
“We have the longest waiting lists in gynaecology across all the medical specialties and to me, that suggests it’s not being taken seriously enough by the government to give enough funds for the NHS to prioritise, and I really think there should be an overhaul of elective gynaecology care,” Dr Husain says.
“The way that we assess priority needs to be looked at because there is a bit of a gender bias and it’s reflective of society as a whole,” Dr Husain says. “I think we need to recognise that somebody who’s passing clots [which a person with endometriosis might well be] and anaemic, who has come into A&E many times and is in so much pain that they’re not able to look after their family, is suffering and that this has a big impact on society.”
“I know other conditions – such as cancer – are an important priority,” Dr Husain continues. “I think we need to include a criteria for quality of life in referral pathways for gynaecological conditions, however, for these women who are suffering with pain and bleeding.”
“And,” she adds emphatically, “don’t forget that fertility is a ticking clock. I’ve got patients who’ve missed their IVF deadlines because some areas have postcode lottery, they can’t get funding beyond 35. Their fertility is declining with age and they’ve already been referred in to us late. We need to do more for people.”
The UK’s fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), added their voice to the chorus of concern.
Rachel Cutting, Director of Compliance and Information at the HFEA, says: “We are concerned that delays in referral or treatments for gynaecological conditions may delay fertility treatment. As success of having a baby after fertility treatment declines with age, lengthy delays, especially for women over the age of 35, may significantly reduce their chance of fertility treatment.”
The wider impact that waiting lists are having on women’s lives must be recognised.
Dr Edward Morris, President of the Royal College of Obstetricians and Gynaecologists
Long waiting times for gynaecology are leaving women and people with wombs to live with debilitating symptoms and also making it less likely that some of them will ever be able to get pregnant.
“The wider impact that waiting lists are having on women’s lives must be recognised,” concluded Dr Edward Morris of the RCOG. “Many women and people are left feeling anxious that their fertility may be affected, others are in distress that they cannot conceive, and this can have a detrimental impact on women’s mental health and their relationships. The impact on fertility needs to be properly considered, and more support is needed to ensure that every woman who wants children has the best possible chances of conceiving.”
Refinery29 UK has contacted the Department of Health for comment.
*Names have been changed to protect identities
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