Endometriosis Patients Are Fighting For Surgery — But Is It The Holy Grail Treatment?

During the wait time for an endometriosis diagnosis — nearly nine years on average — people often have to take pain management and researching treatments into their own hands. Mariya Nadeem, 23, from London has lived with endometriosis for 10 years and has tried almost everything. “When I spoke to my gynaecologist, she effectively said there were only two options: hormonal birth control, or non-hormonal tablets for the pain, but I’d still need to go through the process of a period,” she explains. Due to a “horrific experience” with the combined pill, she doesn’t want to take it again; instead she uses a painkiller (mefenamic acid tablets), even though it doesn’t provide as much relief as it used to. She’s also taking a range of daily supplements — magnesium, vitamin C, vitamin D, omega-3 and probiotics — which she says provide “a slight improvement” [ed. note: please consult your doctor before starting any pain or supplement treatments] along with anything else that gives her comfort, like chamomile and honey tea when she's achy, or a pregnancy pillow when she has back pain. 

Endometriosis is a long-term condition and although it’s not life-threatening, some health experts have compared it to cancer in terms of the severity of pain it causes. In people with endometriosis, tissue similar to the lining of the womb grows in other parts of the body, including but not limited to the ovaries, fallopian tubes and bladder. The tissue can become inflamed, swell and bleed during the menstrual cycle. Symptoms can include extreme pelvic pain, pain during and after sex, pain when emptying the bladder and bowels, nausea, irregular and heavy periods, and difficulty getting pregnant. Doctors still don’t know why 10% of women and those assigned female at birth have the condition. There is no cure, so treatments focus on relieving symptoms. 

Endometriosis care is finally evolving after increased news coverage and pressure from the general public and charities like Endometriosis UK. Clinical trials are questioning how pain is mitigated and new medications might be approved for treatment. For those with the condition, this could mean release from years of pain. 

One option that Nadeem has not been able to try — although she has been fighting for it and is finally on the waiting list — is laparoscopy. This is a keyhole surgery allowing doctors to examine abdominal and reproductive organs. It’s the main way to officially diagnose endometriosis, which can be difficult to do as the tissue won't always show in scans. Laparoscopy can reveal the extent to which endometrial tissue has spread in the body; tissue can also be removed during the procedure. However, waiting lists are long and are a postcode lottery. Patients like Nadeem often spend years fighting to be added to those lists. Desperate for relief, people with endometriosis — and even some doctors — pin their hopes on laparoscopy as the “gold standard” answer. Yet in recent years, experts in the field have been questioning the long-term impact of surgery. Now, they’re investigating it. The fact that we're not quite sure what the holy grail of endometriosis treatment is shows how the system continually fails people with uteruses.

The guidelines supporting the laparoscopy procedure are based on just three clinical trials — “all quite small”, Dr Lucy Whitaker, senior clinical research fellow and honorary consultant gynaecologist at the University of Edinburgh, tells Refinery29. Just 171 patients were involved across all three trials, and they were only followed for six to 12 months. While the procedure has been life-changing for some patients, laparoscopy can leave behind scar tissue and can end up being repeated, given that the growths might come back and that some people find their pain continues. In the short term after surgery, many people report benefits (particularly in the first six months) but others report having worse pain, especially after six months, according to Whitaker.

Calling this disappointing would be an understatement but it speaks to the gender healthcare gap that women come up against all too often when seeking medical help. Whitaker says it’s important the medical field recognises that while existing studies support the removal of endometrial tissue, “there’s a real unmet need to better assess whether or not we should be doing this.” What's more, Whitaker says that around half of those who undergo laparoscopy will learn they don't have endometriosis — it’s a diagnostic procedure after all — but will have made themselves vulnerable to the rare risks of the surgery, such as infection, bleeding, clots, developing a hernia, and injury to the bowels or bladder. (Bear in mind that these are the risks of keyhole surgery in general, and not specific to when it’s done to remove endometrial tissue — that data still doesn’t exist.)

Whitaker is part of the team working on a study called ESPriT2, which, when completed, will be the largest surgical trial done to date on endometriosis and laparoscopy. They’re inviting people with suspected superficial peritoneal endometriosis (the most common type of endometriosis) to take part in the trial, which will split participants into two camps: those who have their endometrial growths removed and those who don’t. Participants won’t know which group they’re in, and will still have access to other treatment for their pain. The aim is to assess whether the group that undergoes surgery has better pain control and quality of life up to five years later, or if both groups are coping similarly. Currently there are 1,059 people signed up to the ongoing study, with likely more to come. 

Compared to past studies it’s a staggering number of participants, and the results may change what endometriosis care looks like in the future, but it’ll be a few years before those findings trickle down into the everyday pain management of those with the condition. Whitaker wonders if diet, supplements, reducing inflammation and other lifestyle factors can have an effect, and whether they will become a more significant part of pain management, but again, we don’t yet have the data. She’s also aware that Ryeqo, a hormonal medication used to treat fibroids, is under review in the UK as a treatment for endometriosis. It’s been approved in other parts of the world, including Australia, and soon we may be able to prescribe it here, too.

It's uncomfortable to acknowledge that surgery — the very thing patients are begging NHS doctors for, or even shelling out for privately — might be making things worse for patients in the long term. But this is exactly what happened to 30-year-old Alix Thompson from Somerset, who has undergone four surgeries in five years, with endometrial regrowth happening within a year each time. She’s due to have her fifth surgery in the next month. Thompson didn’t know she had endometriosis until one day in 2018, when she suddenly developed agonising pain in her pelvic area. After being rushed into emergency surgery for a suspected burst appendix, it was discovered on the operating table that actually she had endometriosis. 

“Before that, I’d never suffered from the normal symptoms,” she tells Refinery29. “I only had bloating and my doctor put it down to IBS [irritable bowel syndrome]. Since that surgery, I’ve had horrendously painful periods and pain during sex. I said to the consultant, ‘You’ve done this to me, I was fine before.’ And he said something along the lines of ‘Maybe that surgery triggered symptoms.’” Although research is lacking, and more data is needed to understand why surgery might cause pain, one theory is that pain may occur when a procedure fails to properly remove the tissue growths. Thompson will never know for certain what would have happened if she hadn’t been rushed to hospital that day, but for her it marks a clear distinction between life before and after that first surgery. On the morning of her second surgery, the consultant tried to cancel the operation, claiming it would be a “waste of NHS money”, as Thompson remembers it. “He said there’s no way it could have regrown so soon but when I woke up he came out like a naughty school kid, all sheepish, and admitted it had grown back but this time on the opposite side to the first time.” 

The new growths were wrapped around Thompson’s left fallopian tube and entangled her ovary on that side, too. She had a long recovery period and then, as Whitaker notes lots of women experience, six months of feeling better before the cycle repeated itself. Like many women, Thompson tried the coil and contraceptive pill, without success. She’s now going down a “holistic route” with supplements, pain patches and a hot water bottle between surgeries. Thompson says she feels better now than she has over the last five years.

When it comes to hormonal treatment, progesterone can be the key, says Dr Jan Toledano, a women’s hormone specialist and founder of London Hormone Clinic. Patients are being let down, she says, as often they are prescribed synthetic progestogen instead of the real thing, both of which are available on the NHS. Toledano’s concerned that women may write off hormonal treatment too soon, if they aren’t given the right kind. Synthetic progestogen is made to mimic the effects of the progesterone hormone that occurs naturally in the body but it is not identical to the real thing. Body identical or micronised progesterone also exists and can be prescribed. There is data that concludes synthetic options pose more health risks, such as increasing the risk of breast cancer, than the real hormone, as well as more side effects. 

In Toledano’s professional opinion, if a woman is on body identical progesterone, her case shouldn’t get to the point of needing surgery because hormone treatment should be enough to manage the symptoms. “My view is if you need surgery, it’s a failure,” Toledano says. “Doctors don’t routinely prescribe the real hormone, instead they prescribe synthetic progestogen, which a lot of women don’t get on well with. Meanwhile the real progesterone also shrinks the endometrial lining and is anti-inflammatory (while oestrogen makes the lining grow and is why periods can be so painful), but typically with less side effects.” Anecdotally, one of her patients was told by a previous doctor that she was infertile due to the severity of her endometriosis; now, some years after going on body identical progesterone, she has two children and no longer suffers with agonising periods. This same kind of progesterone is now commonly used in HRT (hormone replacement therapy) prescriptions to treat symptoms of menopause — a hard-won victory after years of patients being limited to the synthetic option. The body identical version is also used in fertility treatment. “The field is changing in favour of micronised progesterone,” Toledano says, “because more and more studies are showing that it is far better.” In the NHS, this treatment still isn’t often considered for endometriosis, although Toledano thinks this will shift with time. 

For those struggling with endometriosis today, the outlook might seem bleak if none of the current forms of treatment works. However, more research into endometriosis care is being done than ever before, partly thanks to campaigning by people with the condition. Several petitions have been filed over the years, pressuring the government for more funding for endometriosis research; after one of these petitions attracted over 100,000 signatures, the government responded by saying that between 2015 and 2020 (the year of the petition), it had awarded £8.52 million for research into endometriosis. While many of these online petitions didn’t receive enough support to go to parliament, the sheer number of them shows how urgently progress is needed. Finally, that seems to be happening. The science will take time but the long-overdue attention offers real hope that one day, the care available will be much better — and the lives of people with endometriosis will be, too.