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Endometriosis affects 1 in 10 Kiwi women, this article is going to focus on three everyday women living with the effects of endometriosis. Each are in different stages of life, and are all coping with their endometriosis differently.

Hannah is 19, she is a student, and due focal migraines that are triggered by changes in hormones she is unable to use hormone altering treatments. Such treatments include;

• Contraceptive pills.
• Non-hormonal (copper) IUD
• Hormonal IUD
• Birth Control implants
• Hormonal Injections (Depo Provera)

This limits Hannah’s option to pain management, this has been trying for her. 

Charlotte (Lottie) is 22, she was diagnosed with endometriosis at 16 when she had laparoscopic surgery.  During the laparoscopy endometriosis tissue was removed and had a mirena IUD inserted. Since then Lottie has continued to use the mirena to cope with her endometriosis with mostly success.

Jackie had always been struggling with hormone imbalances and pain for a few years, she eventually tried natural hormone treatments that worked well for her. This was until one night two months ago where she awoke in the night with excruciating pain. After an appointment with her gynaecologist Jackie had a hysterectomy booked in three weeks later to remove what her specialist described as widespread and severe endometriosis. 

I sat down with each of these three women to discuss their journeys with endometriosis; from symptoms to diagnosis, coping mechanisms and the lack of education on endometriosis. During this time I also surveyed 60 women who suffer from endometriosis, gathering information such as –  their thoughts on their diagnosis and struggles they have faced living with a chronic disease.   

Hannah has had focal migraines triggered by changes in hormones since she began intermediate school. They have seriously affected her life. When she was finally seen by a doctor about her incessant menstrual cramps Hannah was prescribed the pill. She knew immediately she couldn’t take it and told her doctor this. He offered her the rod, this also alters your hormones she repeated. Hannah left the doctor’s office with a prescription for pain medication and a feeling of desperation. 

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For years she had been denied access to proper care for her infurreable pain, she was told she couldn’t have PCOS or endometriosis multiple times. Hannah had an MRI on her hip for an unrelated condition and the image the radiographer saw frightened him, he told Hannah there was something seriously wrong. When he returned he nonchalantly informed her she was fine, she just had masses of ovarian cysts blocking a clear view of her hip.

Nothing else was done about this, the cysts weren’t even noted in her medical records. Studying nursing at Wintec Hannah notices a huge oversight in her care, “I was let down by the health system,  I was constantly forgotten.” 

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Still Hannah has not been officially diagnosed, and after having blood work done for an unrelated illness it was discovered she had hormone levels equivalent to a premenstrual teen or post menopausal women. These results indicate something deeper yet have not been investigated. Hannah works as a healthcare assistant and receptionist at an elderly care home. The work, on top of her nursing studies are incredibly demanding, and are often interrupted by unbearable cramping. She soldiers on though, with no other options Hannah said “I just have to get on with it.” 

The price of living this endo is mental, physical and monetary, the cost of seeing a specialist is eye watering and the waiting lists for public healthcare are huge. Until a month ago the cost of an IUD (without insertion) was upwards of $1000, depending on which brand you pick. Women, like Hannah who can’t stop, control or predict their periods spend huge amounts yearly on sanitary products. Living with PCOS or endometriosis is an uphill battle, and living on a tight budget makes it even more difficult to manage. This is just one of the many reasons more funding and education is needed to help overcome these struggles. 

At thirteen years old Charlotte (Lottie) like many other girls started her period. The difference was though, that Lottie had developed endometriosis and began to suffer severe symptoms, such as vomiting and fainting due to such unbearable cramps. At this point, Lottie didn’t know she had Endo; she didn’t even know it existed. 

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The struggle to get diagnosed was many painful years long. Lottie went to her G.P dozens of times each year; but doctor’s visit always ended with a different painkiller prescription, or a different pill. These treatments never worked for her. The contraceptive pills she was prescribed affected many aspects of Lottie’s life. Her weight fluctuated, parts of her appearance changed, she suffered mood swings and she was still in unbearable pain. Lottie has also been a lifetime sufferer of chronic intractable migraines  “Because of my migraines taking the pill increased my chances of having a stroke by 50%.” Finally, at 16 she was referred to a specialist clinic. Lottie was immediately booked in for laparoscopic surgery and a mirena insertion. 

Thankfully the surgeons were able to remove the invading endometriosis.  ‘The merina worked well my periods used to be two weeks long, but now after the mirena they’ve halved. They’re still 7 or 8 days but it’s better than it was” – Lottie.  Although Lottie has had some success with a mirena it isn’t clear skies ahead, endometriosis is a lifelong issue, and could flair at any moment. Living with a feeling of impending doom is incredibly taxing, and the support is woeful.

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Endometriosis has affected Jackie in many ways, her eldest daughter was diagnosed with the condition in 2013 and suffered terribly because of it. Jackie has suffered Low progesterone and low adrenal support hormones that caused her severe bouts of anxiety and sleepless nights. After talking to a close friend in 2016 Jackie was referred to Patients Advocate and began natural hormone therapy that alleviated most of her symptoms. Having had minimal problems with menstruation despite hormone imbalances the possibility of having endometriosis never bothered her.  This was until her youngest daughter was diagnosed with endo three years later. This brought Jackie back to reality, with both of her children having the disease, realistically, bring a carrier of endo was undeniable. Though still not having issues it wasn’t as important as looking after her kids who were suffering. 

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Already having two adult children, Jackie didn’t want any more kids – so knowing she may have endo never worried her. This was until the middle of 2018, when her periods began to change, becoming heavier, more prolonged and significantly more painful. Jackie also started suffering from anxiety again and was experiencing irregular, painful bowels- all symptoms of endometriosis. In October of 2019 Jackie awoke suddenly in the night with excruciating stomach cramps.  “It felt like felt like I was going to die, the pain was so sudden and intense – and as soon as it came, it went.” Soon after the episode she decided to see her G.P, who referred her straight to a specialist Gynaecologist.

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Three weeks after the specialist visit Jackie was being wheeled back down a hospital corridor. Jackie had just had her uterus, cervix and tubes removed as well as a significant number of deep extensive endometriosis lesions which were climbing up parts of Jackie’s organs. Surgeons also found extensive cysts and that her uterus was swollen due to Adenomyosis. Less than a month after seeing a specialist for the first time she had had a hysterectomy. “The urgency worried me, how quickly it all happened, but having everything taken out doesn’t bother me. I already have two kids, my uterus was just causing more and more pain.”  

Jackie is three weeks into recovery now – she said it had been very difficult for her.  Jackie has always been very active, and being physically unable to do anything is dreadful. Having the inability to do anything yet being constantly exhausted has been “very hard mentally.” Being so soon in to recovery it is hard to tell how she feels about the whole situation but says she has had amazing support, and is looking forward to being fully recovered.

I surveyed 60 women suffering endometriosis to find out how living this endometriosis affects them. The response was overwhelming, unfortunately the majority of women described year long struggles to be taken seriously.

It is disappointing yet unsurprising that many people struggle to get proper support with most aspects of endometriosis, from pain relief to financial support for expensive specialist visits and surgeries. Endometriosis affects people in ways you wouldn’t imagine, for example, 95% of women surveyed suffer from chronic fatigue, 85% expriance pain druing intecourse and/or uncomforable bowels and bowel movements. 

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Many women said they suffer unbearable back pains that become debilitating during menstruation and cramping. It is heartbreaking that women living from a common condition are having to fight to be taken seriously,  the lack of recognition makes people ignorant, and puts in uncomfortable positions with people who are misinformed. 

“I’ve also had relationships with guys were my endo has gotten in the way because intercourse hurts. You feel trapped in a faulty body and a faulty health system that really doesn’t give a sh–t.  Even when you went into hospital there was nothing that they could do other than dose you up on so much pain meds you’d be vomiting for days.” -Morgan, 21.

It is important that we advocate for the 178 million women worldwide enduring endometriosis, despite being such a huge number of people we are not being heard. I encourage everyone to share their stores, create a conversation about living with endometriosis. If more people educated on what endo is and how it affects those who have it, more people have the voice to inform those who may be suffering with no answers. We need to do our bit to empower a movement, a movement for change, for more effective treatments, and hopefully, one day – cures.

Do you or someone you know have Endometriosis, or suspect you may have the condition? Find advice and help here –

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