Left undiagnosed, the damage caused by endometriosis can leave some women infertile. Photo / 123RF
A diagnosis for endometriosis takes an average of eight years, meaning thousands of women are suffering needlessly.
It took Bridie Howard 17 years of crippling period pain and a year of trying unsuccessfully for a baby to get her GP to take her symptoms seriously. Since the age of 12, when her periods started, Howard had been told by various GPs that the intense monthly pain was something she simply had to endure; the painful price of being a woman.
“I couldn’t physically sit in a classroom because the pain was so bad. I missed days of school every month and was falling behind, yet this was somehow deemed normal,” recalls Howard, 31, an accountant from Leeds. “The pain felt like someone was running a hot knife through my pelvic area, hips and back, and I’d have to stay in bed for days with a hot-water bottle, taking painkillers.”
Each time she went to the GP, her condition was glossed over. “It made me doubt myself,” says Howard. “Was I exaggerating? Did I just have a low pain threshold?”
At 15, she was given the Depo-Provera contraceptive injection, which stopped her periods altogether. “While the period pain went, I still suffered with chronic fatigue and back pain and could barely walk around a shopping centre without needing to sit down,” she recalls. “But I just learnt to live with it.”
When Howard met her partner, Ben, she decided to stop her regular contraceptive injection, knowing they’d soon want to try for a baby.
The painful, heavy periods returned with a vengeance, but, once again, the GP dismissed her symptoms as “normal”, adding, rather bizarrely, that “having a baby would really help”, given that a pregnancy stops periods.
When Howard was 28, she started trying for a baby, but when nothing had happened after a year, she demanded a more thorough investigation.
“I filled in an eConsult online form to my GP and begged them to listen to me and finally take me seriously, flagging up the possibility of endometriosis for the first time, as I’d done some research and it seemed to tally with my symptoms,” she recalls.
Endometriosis affects one in 10 women in the UK and is a condition where tissue that would normally lie inside the womb, the endometrium, grows outside the womb instead, most commonly in the pelvis. As it is then unable to leave the body, this can lead to inflammation, pain and the formation of scar or endometriosis tissue.
There are various theories on the cause; it could be down to genetics, a problem with the immune system, or the presence of endometrium cells spreading through the body in the bloodstream or lymphatic stream, but none of these theories fully explains why it happens.
In September 2021, Howard was finally referred to a gynaecologist and had an investigative laparoscopy – keyhole surgery into the pelvis. The results were devastating.
“My entire pelvic area was a mess due to severe endometriosis,” says Howard. “My ovaries were fused to my pelvic wall, there was sticky scar tissue in my ovaries and womb. It had even spread to my bladder and bowel.”
Howard had surgery, but the damage was too extensive and she was declared infertile.
“For 17 years, the doctors fobbed me off, and all that time the endometriosis had been causing so much scar tissue,” says Howard. “If they’d diagnosed it earlier, I could have made decisions, such as having a baby earlier, naturally, before so much tissue had formed, or freezing my eggs.”
Sadly, Howard’s experience is far from rare; on average, it takes eight years to get a diagnosis of endometriosis.
“It’s an unacceptable length of time to wait for a diagnosis,” says Faye Farthing, head of campaigns at Endometriosis UK. “All too often, people are told their pain is ‘normal’, or ‘just a part of being a woman’, or even that the pain is in their head. Nobody should be dismissed for the symptoms they’re experiencing. If you’re struggling to get a diagnosis, you can always ask for a second opinion, or change GP surgeries. We also recommend keeping a pain and symptoms diary, so you can show your GP what you’ve been experiencing and when.”
Consultant gynaecologist Dr Amit Shah, co-founder of the Harley Street clinic Fertility Plus, says a campaign to raise awareness is essential.
“Sixty-two per cent of 16- to 24-year-old women don’t know what endometriosis is, and while the usual first port of call for a young girl when complaining about her periods is to her mum, she may also placate her and convince her it’s normal,” explains Dr Shah. “But it’s not normal if you’re in so much pain it’s disrupting your daily life and you have to miss school, or days out with friends. Patients and parents need to push health professionals and bring up the possibility of endometriosis and ask for a referral to a gynaecologist, who can investigate further. Going on contraception can keep endometriosis and its symptoms under control, as it stops eggs being released and makes periods lighter and less painful, but it doesn’t solve the problem.”
As a fertility specialist, Dr Shah knows that solving the problem, or at least addressing it earlier, is crucial when it comes to future fertility.
“Endometriosis can influence fertility in several ways. It distorts the anatomy of the pelvis and can leave adhesions, scarred fallopian tubes, inflammation of the pelvic structures, and can alter immune-system functioning and your egg quality,” he explains.
Poor immunity profoundly influences reproductive health, since infections can have a negative impact on fertility.
“Whilst many with endometriosis will be able to get pregnant naturally,” adds Dr Shah, “it does increase the risk of infertility, and by not diagnosing it earlier, we’re denying the opportunity for an individual to make choices.”
Investigations will include an ultrasound or MRI scan, but they’re not always conclusive and more invasive surgery, such as a laparoscopy, may be necessary.
“There are three types of endometriosis,” says Dr Martin Hirsch, consultant gynaecologist and endometriosis specialist and spokesman for the Royal College of Obstetricians and Gynaecologists. “Superficial peritoneal lesions are the most common kind, in the lining of the pelvis, then there are endometrioma, cysts on the ovaries, and the deep, severe endometriosis that is almost like putting cement down the pelvis, with everything stuck down with scar tissue. Ultrasound scans are good for detecting cysts on ovaries, and an MRI is good for ovarian cysts and the deep, severe type of endometriosis, but the superficial lesions are harder to see with scans and may require more invasive surgery.”
Dr Hirsch admits that while there’s little evidence that treating endometriosis early will help fertility, he says, “There’s no doubt the condition advances with time and can go from minimal to severe, and infertility rates are higher with severe endometriosis.”
But while heightened awareness is great, what if you can’t get to see a gynaecologist for months?
With the average waiting time to see an NHS gynaecologist in England now rising from 4.8 to 15.6 weeks, Dr Hirsch recommends contacting the endometriosis clinic at your local hospital to ask the clinical nurse or pain-management specialists for advice while waiting for your appointment. “Engage with the waiting-list co-ordinator, too, and make yourself available for any cancellations,” he says.
For Howard, receiving a diagnosis of endometriosis after so long came as a relief as well as a shock. “At last, I had an answer and we could come up with a plan,” she says.
Howard underwent hormone therapy for six months following her surgery, which temporarily stopped her body from producing oestrogen and put her into a false menopause, after which the couple were given the green light for IVF on the NHS. Her first cycle had to be abandoned after 15 days because her ovaries were still too sleepy after the hormone therapy, but her second cycle was successful and she gave birth to their first child, Enzo, in January this year.
“I really didn’t think it was going to happen, so he really is our miracle baby,” she says. “It’s been quite a journey and IVF is an emotional rollercoaster, so I’m not sure if we’ll be doing it again, but I’m just so thankful we were able to have him.”
Washington Post: The mindset should be - less fuss, more fun with company.