Dealing with endometriosis: women share their stories
Endometriosis, a long-term, incurable condition, is believed to affect 1 in 10 women of reproductive age — or roughly 176 million women over the world. It’s as common as, say, diabetes, but it isn’t unlikely that you’ve never heard of it before. Or perhaps you’ve heard the word but never really understood what it means. And yet, 176 million people have to deal with the symptoms of endometriosis, or ‘endo’, on a day-to-day basis. These symptoms include chronic pain, heavy bleeding, nausea and vomiting, anxiety, chronic fatigue, bloating, pain during sex, a chance of infertility…the list goes on. So what is endometriosis, how do those women that have the illness deal with the symptoms, and what treatment are they receiving?
Put simply, endometriosis occurs when the cells found in the lining of the womb are also found elsewhere. This can be in the abdomen, the ovaries, the bladder, or the bowel, among other places. And, just like the womb lining, once a month these cells break down and bleed. Unlike the womb lining, which has safe passage out through the vagina, this blood has nowhere to go, so simply stays put as scar tissue. Every month, and sometimes between periods too, some women with endometriosis can feel such pain as to make them vomit, have diarrhoea, and even pass out.
Sinead Kelly, a 29-year-old customer service advisor, first realised there was something wrong when she was about 17 and her periods were “ridiculously heavy and extremely painful”. Speaking to friends made her realise this wasn’t normal, yet her GP told her that some women just have heavier periods. When she was 20, Sinead had a daughter, and as pregnancy can provide temporary relief from symptoms, she forgot all about it. Yet when her daughter was around a year old, things started getting much worse. She would bleed during and after sex, and the pain worsened, occurring throughout the month and not just when she was on her period. Her doctor kept sending her away with various reasons for her bleeding — and she was even told she “probably had chlamydia”. Eventually, Sinead did some research online, thought she probably had endometriosis, and found an understanding GP who sent her for a laparoscopy. “Surprise surprise,” says Sinead. “Endo everywhere!”
The stories of the journey from realisation that something is definitely not right to eventual diagnosis are similar for almost every woman I speak to, with the majority having lengthy waits of up to ten years to actually receive a diagnosis. Rochelle, a 27-year-old showroom manager, said she had always had heavy periods and really suffered when menstruating, regularly having to take days off school as she was so unwell. Her GP put her on the pill to regulate her cycle as she was spotting, and while this helped for a while, when she was 18 she began having the same problems again. She was told it was “just part of being a woman”, and given naproxen for the pain and tranexamic acid for the bleeding.
“It took me around eight years to be taken seriously,” she says. “It wasn’t until last year at the age of 26 that I finally found sympathetic and knowledgeable doctors. After a lot of begging, my regular gynaecologist put me forward for a laparoscopy and found nothing to be wrong, which was very confusing and upsetting.” Rochelle was told to have a baby to help with her symptoms. Knowing this wasn’t right, Rochelle paid to see a private specialist in Oxford that was recommended to her on a forum. The doctor noticed a nodule of endometriosis straight away during an internal examination and Rochelle was diagnosed with both endometriosis and adenomyosis, as well as nerve damage caused by being in pain all the time.
“Being in pain all the time” is something that every woman talks of. “It spreads to the groin and lower back and sometimes shoots down my thigh,” says Sinead. “I’m sometimes unable to get out of bed,” adds Rochelle. Dionne McFarlane, 19, says she was told the pain was in her head, and yet “it got to the point where I was doubled over in a toilet cubicle in pain, vomiting and bleeding so heavily that an emergency referral to gynaecology was put in”. On top of the pain, other symptoms abound, and all vary from woman to woman.
For Dionne, the illness also causes symptoms “similar to a UTI”, like frequently needing to pee and feeling like you’re not emptying your bladder properly. One 19-year-old student I spoke to adds that endometriosis gives her severe PMS. “I get hot flushes and sudden dizziness — so much so that I can’t drive.” All the women also mentioned bloating. The majority had to have days off work when their symptoms were at their worst. For a condition that affects so many women so drastically, it is shocking that it is still taking so long to be noticed.
Once a diagnosis has been made, many women report feelings of relief, rather than being upset at suddenly being diagnosed with an incurable condition. Why? Because it is as if finally someone has accepted that they aren’t just making up all their symptoms. In the 14 years it took 29-year-old Claire Barker to be diagnosed, she heard all sorts from doctors, but feels they all failed to look at her symptoms combined to establish a wider picture. When she finally had a laparoscopy and was diagnosed with stage four endometriosis, the disease had spread to many areas of her body, including her bladder, her bowel, and her diaphragm. “I was so relieved to find out why I’d been so terribly unwell, but also very angry that my diagnosis took such a long time,” she says.
But what about when a diagnosis is finally made? What happens then? For many women, they are simply told “have a baby”— partly because endometriosis could affect their fertility, and partly because pregnancy is likely to provide temporary relief from the symptoms. For obvious reasons, this advice isn’t all that helpful for a woman in her early twenties, who can barely work because of the pain, let alone think about starting a family.
In terms of actual medication, the options vary, depending on the person. Painkillers and antidepressants are often prescribed, and women can undergo operations to have scar tissue removed. Hormone treatment is another option. “Since diagnosis I’ve had excision surgery three times and I am currently waiting on my fourth,” says Sinead. “I’ve had every contraceptive method, every hormone treatment including Zoladex and HRT which put me through menopause at age 24.” She still suffers from pain and takes tramadol, and amitriptyline to help her sleep. On top of all that she takes the Depo-Provera injection every 12 weeks which slows the growth of endometriosis. She takes fluoxetine for the anxiety the condition has caused her.
Rochelle, too, previously took Zoladex to help treat her endometriosis. “It’s a GnRH antagonist which essentially shuts down your ovaries and causes a ‘temporary menopause’,” she says. “As oestrogen is supposed to worsen endometriosis, if the ovaries are shut off the pain should get better and the endo can also shrink.” Unfortunately, the treatment comes with a lot of side effects, and Rochelle was one of the unlucky ones, regularly getting hot flushes, night sweats, extreme fatigue, joint pains, and low mood. After four months of this she was put on HRT, but also reacted badly to this. She had her last treatment of Zoladex a month ago and is now waiting for it to leave her system before specialists decide what to do next.
Dionne has found that massages to the areas of her body affected by pain can be very useful. Like Rochelle and Sinead, she takes a handful of drugs a day to treat the symptoms of endometriosis. Claire, and several other women I spoke to, rely on birth control to keep their endometriosis under control, reduce symptoms, and protect their fertility, with Claire recently coming off hers in order to try and conceive. For many women, hormonal contraceptives can be extremely effective in getting symptoms under control and ensuring that fertility is not compromised.
Medicine aside, the only other option for all of these women is just to keep on going, now that they have finally got their diagnosis. And yet, the mental as well as the physical side affects can take their toll. Because endometriosis is such an under-researched condition, very little is actually known about it, meaning sufferers can struggle to find advice and empathy from both friends and relatives, and health professionals. A lifeline for many women seems to be joining a dedicated support group. “When you do feel depressed and lonely the best thing is to chat to other women in the same situation,” says Sinead. “I joined a social networking site for endo called My Endometriosis Team and it’s great. You get a lot off your chest and people actually understand. It’s such a breath of fresh air talking to someone who has experienced your pain rather than a family member who struggles to offer sympathy as they have no idea how it really feels.”
For Rochelle, too, the online community has been a huge help. “Forums such as health unlocked and a Facebook group called Endo Revisited have been so helpful,” she says. “They are great for having questions answered, recommendations from other ladies experiencing the same problems, and just for moral support.” The woman who started the Facebook group actually helped Rochelle find her specialist — Rochelle adds that she wouldn’t have had enough confidence to track her down and actually see her without the support. Dionne advises that those with endometriosis use Endometriosis UK as a way of getting information, and for advice on support groups that are running near where you live. “The main thing,” she says, “Is to definitely keep talking if you can, because this condition can have more of an emotional effect than anything else.”