Could you be suffering from endometriosis? Signs to look for
The condition is pretty common, yet it still takes an average of seven and a half years to get diagnosed. During awareness month, Liz Connor finds out more
Awareness around endometriosis - the chronic and sometimes debilitating gynaecological condition that affects 10% of women worldwide - is finally growing, thanks in part to celebrities like Lena Dunham and Whoopi Goldberg speaking out about their experiences, but there's still a way to go.
In the UK, it's believed that one in 10 women of reproductive age is affected, yet according to the charity Endometriosis UK, it takes seven and a half years on average to be diagnosed.
There's no single cure for endometriosis but getting the right treatment and advice can make a big difference and surgery can sometimes help - which makes being aware of the potential signs and symptoms all the more important.
With Endometriosis Awareness Month taking place throughout March, Mr Amer Raza, consultant gynaecologist at The Lister Hospital (part of hcahealthcare.co.uk), explains more...
Firstly, what exactly is endometriosis?
"Endometriosis occurs when the tissue lining a woman's uterus (called the endometrium) grows in other areas of the body - for example, in the Fallopian tubes, on the ovaries, or in the tissue lining the pelvis," explains Raza.
He says the endometrial cells found outside the uterus behave in the same way they would inside the womb, mimicking the menstrual process by building up and breaking down monthly.
However, unlike with a period, the blood has nowhere to escape. "As a result, it can sometimes accumulate, triggering cysts on the ovaries or elsewhere in the abdomen, and making the organs inside the abdomen stick together," says Raza. This can lead to severe pain that can have a significant impact on quality of life.
What causes it?
The exact cause of endometriosis is still unknown, but Raza says there are several theories.
"The most accepted theory is retrograde menstruation," says Raza. "This is where the womb lining doesn't leave the body properly during a period, but travels back up the Fallopian tube and embeds itself in the organs surrounding the pelvis.
"Another theory is that endometriosis could be inherited genetically, as it is often diagnosed in sisters and daughters of women who have the condition.
"Other considered causes include circulatory spread (where tissue particles spread around the body in the bloodstream), immune dysfunction, environmental causes (where environmental toxins penetrate the body and reproductive system), and metaplasia (where cells outside the uterus change into endometrial cells to adapt to their environment)."
What symptoms should I be looking out for?
Endometriosis symptoms can sometimes be vague, or easily dismissed as just a 'normal' part of having a period. However, these are some of the key warning signs:
Very painful and heavy periods
Many women with endometriosis will experience very painful periods that are occasionally very heavy.
"Because most women will suffer with some degree of cramping when they are approaching their menstrual cycle, it can be hard to judge what is 'normal' pain and what is 'abnormal' pain," Raza acknowledges.
"If you are experiencing menstrual pain that prevents you from working or going about your usual day-to-day activities - and over-the-counter painkillers are doing nothing to improve the pain - make an appointment with your local GP, as this could be a sign you have endometriosis."
Ongoing pelvic pain could also be an indication. Raza says this is triggered by the endometrial tissue and cells which are spreading around your reproductive organs.
"The pelvic pain is cyclical initially but as the scarring increases, the cyclical nature changes into chronic pelvic pain," he notes.
"Depending on the location of the endometrial tissue or cells, some women with endometriosis may experience pain during sex," says Raza. "If the tissue is stretched during intercourse, pain can be significant, and for some, sexual penetration is not possible. Pain on deep penetration is another sign of scarring inside due to endometriosis.
"It's important to note that pain during sex can come from a variety of causes, so you should see your GP to get this checked out regardless of whether or not you think endometriosis is the root cause."
Some women with endometriosis will experience difficulty in becoming pregnant, says Raza.
"One common theory for this is that the inflammation and irritation caused by endometriosis can affect the women's 'fimbria', which picks up the egg and transports it into the Fallopian tube," he explains. "Swelling and scarring of the fimbria could mean that the egg may never reach its destination. The fluid in the abdomen can also hinder the meeting of sperm and egg, hence making it difficult to get pregnant."
Not everybody with endometriosis will experience fertility difficulties, however. "It's thought that those with minimal to mild endometriosis have an almost normal chance of conception - however, for those with moderate to severe endometriosis, chances of natural conception are reduced," says Raza.
Pain while using the toilet
Endometriosis can cause pain during bowel movements. Raza says: "It's estimated that around 60% of women with endometriosis will develop at least one symptom in their gastrointestinal tracts."
This is because endometrial implants can develop in certain areas of the bowel or on nerves and ligaments around the bowels, causing pain throughout this area.
You might also experience episodes of diarrhoea, constipation and uncomfortable bloating as a result.
Pain during urination is also common. "When the endometrial cells embed themselves into organs - like the bladder - they tend to burrow deep within the walls of the organ. These cells then react in the same way as they would in the womb, and lead to blood becoming trapped within the organs, which in turn becomes inflamed.
"If your bladder is affected by endometrial cells then you may experience pain during urination, or an overactive bladder, where you have feelings of urgency or frequency," Raza notes.
"Around half of women diagnosed with endometriosis will experience chronic fatigue," says Raza.
This is believed to be caused by the ongoing inflammation inside the body.
"Because the body is continually attempting to heal and repair the inflammation wounds that endometriosis is causing, this can trigger a variety of immune responses and result in significant fatigue," Raza adds.
Heavy periods can lead to low iron levels too, which can also be a common cause of fatigue in women.
What should you do?
If you're experiencing any of the symptoms associated with endometriosis, have a chat with your GP. It might be worth keeping a symptom diary to take with you to the appointment.
For more information, see www.endometriosis-uk.org.
‘I am really lucky... they found it completely by accident’
Anouska Black (29) from Magheralin has had symptoms of endometriosis for years but counts herself lucky that she was diagnosed relatively quickly.
“I am really lucky because it takes seven to eight years to get diagnosed and then the waiting list for my doctor is two and half years,” she says.
“It was getting worse and worse to the point where they thought it was a tumour. So they found it completely by accident, instead of having to wait and actually go in and look for it.
“I’ve probably always had symptoms from when I had my periods. They were really quite heavy in school and I missed quite a bit of school because of them. I became pregnant when I was 17 and had a boy called Bailey. There were complications towards the end of the pregnancy which they can relate now to the endometriosis.”
Anouska, who is now an Endometriosis Advocate, recalls that it wasn’t straightforward getting a diagnosis, even when she did start showing serious symptoms.
“When I was 19, I started bleeding really, really heavily for a month or two straight. I was really weak and sick, run-down with no energy,” she says.
“I went to A&E on the Monday and they told me I had a kidney infection. I was back on Wednesday and was told I had cystitis. I collapsed at work on Sunday and they finally scanned me and found a 6-7cm mass engulfing my ovary.”
Anouska underwent a partial oophorectomy (removal of part of the ovary) and it relieved her symptoms, but a year and a half later they started to reappear. It took years and a lot of getting shunted from one department to the next until they operated again — and by then the endometriosis was too extensive for the operation that had been planned, as it was affecting seven of her organs.
Anouska was put back on the waiting list for surgery, which took place in 2014.
“It was right up to the diaphragm by then so they had to go right up. My bowel was kinked like a garden hose in two places,” she says.
Anouska has to see so many specialists now — the physio, the clinical psychologist, the neurologist, the gynae specialists — that she is in hospital four times a month to have various procedures done. It’s now thought that she may have fibromyalgia as well.
In the meantime Anouska has been put in medical menopause for the third time because the period pain she experiences is so excruciating.
“I couldn’t move, I was on morphine and everything, so it’s better to stop everything. I have to take HRT every day. It does help but it causes a lot of new problems,” she says.
“That is basically it — where kids are concerned, everything is on hold and dictated for me at the minute.
“I had never even heard about it before I was diagnosed and I think it really, really needs to be taught in schools. It affects one in 10 women and that’s more women than have breast cancer, asthma and diabetes together — but everybody knows about them. After years, we finally have an endometriosis nurse, but we’re the only part of the UK that doesn’t have a specialist endometriosis centre. Since Stormont went down, there is no budget for anything — everything is at a standstill.”
Anouska points out that suicide rates are also high among women with endometriosis.
“It does take everything away, friendships, relationships. Marriages break down, and there’s the depression of not knowing when you are going to be sick — it does take its toll,” she says.
For more information about endometriosis, there is a support group that meets at Belfast City Hospital on the last Thursday of every month. Anouska advises speaking to your GP if you are worried about it and is also happy to be contacted through her Facebook page