Help Wanted: Endometriosis Stories

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On December 17th I graduated from my Bachelor of Arts majoring in Criminology and English Literature, two areas that have vastly changed the way I see the world and make me think critically about everything I read or hear. I am also completely abandoning them to go into nursing, sorry Lit…apologies criminology….it’s not you, it’s me. But for me nothing is ever a waste, I learn something new from everything and truely believe the world would be a better place if more people had Arts degrees (politicians, I speak of you). One thing I certainly gained from my literature degree was the ability to write a damn fine piece of writing…fiction or non-fiction. Qualitative inquiry class in sociology taught me the importance of the personal narrative and how uncovering people’s stories can be a catalyst for social change. So I’m doing something with them. I am starting a long-term project: it’s a book, a book about the experience of having endometriosis.

Talking to other sufferers  I realise one thing most of us can agree on is that this disease is poorly understood and not just by the general public, some doctors cannot even seem to grasp that pain that puts you in bed half the month is not normal, and it’s not “all in your head”, it’s an incurable chronic disease. I want to write about what it is like for women with this disease at various stages…I’ve only just begun my journey so I need the voices of those who are further down the road. These stories will stimulate a discussion of fundamental issues with the understanding of the disease, the effects the disease can have on a person’s life, and how we can foster more awareness and understanding to enhance diagnosis and improve quality of life. It’s a big project, and will likely take me a while to complete, but that’s okay because it will mean seeing how my own journey unfolds as I discover more about what it means to have endometriosis.

So I need you Endo Sisters! If you have endometriosis and you are interested in sharing your story for this project (your identity will be protected and pseudonyms used for the purposes of ethical research), please get in touch! You can write about it, you can send me a video of you chatting about your story (and I’ll take some notes as if it’s an interview), or if you are into Art or photography you can present your story in this form and provide an explanation of what these mean to you. I’ll provide an email address. You also have the option of what you share. Given that this book is going to be in sections, have a look at some of the things below you may want to focus on (choose as many as you like to address, or add your own!):  Content and trigger warning: Infertility, mental illness. Only answer things you feel comfortable with, it’s YOUR story.

  1. Diagnosis: When did you first start experiencing symptoms? How long until you sought help? How long did it take you to get diagnosed? What barriers did you face?
  2. Medical Professionals: How did medical professionals treat you when you presented to them? Were they helpful, understanding, knowledgeable about the disease, empathetic? Did you experience people telling you that the pain was “in your head” or normal, were you told to “suck it up” etc? What do you think makes a good endometriosis specialist?
  3. Living with Endo: what does a typical day look like for you? How has endo changed your routine? Does your disease limit you in any way? How? How do you deal with living with endo, and how do you stay positive? Have you dealt with depression or anxiety as a result?
  4. Treatment: what are some treatments you have undergone for endometriosis? How have they made you feel? Have they worked or failed? Has the cost of treatments been an issue? What do you think of the treatments on offer for endo?
  5. Infertility: have you experienced problems with fertility? Have you tried treatments or IVF? Have you been able to successfully conceive?
  6. Surgery: Describe the experience of undergoing surgical treatments for endometriosis, have they improved pain? Have they left scar tissue etc that have caused problems?

If there’s anything else you’d like to share, feel free! Your story will be treated with the utmost care and confidentiality and your identity will not be revealed in the publication. If you decide you’d like to share your story I will send you a consent form, as I’m treating this the same way I would qualitative research. I am also happy to send you a sample of the section your story is used in to ensure you are satisfied with it’s representation.

Can’t wait to hear from you!

Email: nursedanni17@gmail.com

 

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One thought on “Help Wanted: Endometriosis Stories

  1. I’ve linked my post “Bad Blood” about endo here: https://themelodramaticconfessionsofcarlalouise.wordpress.com/2015/12/19/bad-blood/

    But here are my answers to your questions.
    1. I started first experiencing symptoms when I was 14; about a year after I’d had my first period. I had intense pain, that would often cause me to vomit and black out. Pain tablets didn’t work. I often had to go to sick bay, and many times I’d always be sent home because I was too unwell. Around this point, my mum, who had endometriosis when she was younger (but took years for her to diagnose, because her parents and doctors didn’t believe her, and it was the 70’s) gave me a calendar to mark the frequency and length of my periods. At this stage, I was getting them roughly every 11-14 days (so twice a month). It took two years, and a lot of pushing from my mother, to get a diagnosis. My doctor kept saying that it was just normal. My mother argued that period pain so extreme I’d pass out was not normal. Eventually, one day at school, I started vomiting blood and I passed out in the toilets from pain. I was sent home, collected by my dad who thought it might be my appendix (I’d woken up that morning and was complaining about pain; he was worried it was my appendix then, too). He took me to the doctor, who agreed it might be, and I was sent to have surgery. It wasn’t my appendix (although, ironically, that burst a few years later if you ever want information on that painful experience) but I had several cysts on my ovaries that had burst that caused the pain. After that, the surgeon referred me to one of the best gynecologists in the area (mainly, again, because of the instance of my mother. I have a great mum).
    2. My original doctor wasn’t. He just assumed it was “that time of month”. My gynecologist was, great, however, and immediately put me on the pill. However, this didn’t work; my periods were so bad I had to wear maternity pads, and if I didn’t change them every hour, I would literally bleed through everything. It became decided, especially after a second surgery, that I would only have 3-4 periods a year. I have a new GP now (I’ve moved) and she seems to be pretty good. I’ve recently been having ‘flare ups’ and she doesn’t want me to have more than 2-3 periods a year, and she’s worried I may need to have a second surgery. The pain is still there, though. It’s like my body knows it’s “that time of month” and reacts with everything but blood. She also put me on a better, but more expensive pill, to help stop break-through bleeding.
    3. Endo has been incredibly limiting for me. I get so tired, and so fatigued, that working is almost impossible. If I’m going to have a period, I plan it down to the last detail. If it’s going to be at work, I need to be stocked up on Nurofen Plus (Iburofen + codeine) Mydol (Panadol + codeine) buscopan and naprogesic (which doesn’t work, no matter what the pharmacist keeps telling me), so I often just don’t take it at all. I take Nurofen, Mydol and buscopan together. It’s usually not enough to stop the pain. Because my mum’s a nurse and my ex was a pharmacist, I know the safe doses, but I literally need to overdose to get through the pain (or go to the doctor’s and get panadeine fort – however, sometimes I face the “I don’t believe you’re in that much pain” scenario). There have been times where I’ve been given tramadol and that in itself has been ineffective in stopping the pain. I still pass out sometimes; so usually, if I’m having a period, I try and plan it on holidays or something. It sucks for the holiday; but it gives me a chance to pass out (literally) and try and hide away from the pain. It’s so unbearable that I don’t eat or drink, and my husband becomes my caregiver for a few days. I’m afraid of having children, too, because I’d have to go off the pill, and if things are bad now, I can’t imagine what they’ll go back to – especially if it takes a while for me to fall pregnant.
    4. Expense is a problem. The pill I get is just under$80AUS dollars. Each surgery is a few thousand, even with medicare and private health insurance (fortunately, there’s only been two). Only the strongest pain medication works; and that’s if the pain is sort of tolerable – note “sort of” – it’s usually not at all. If it’s really bad, like I said before, tramadol doesn’t even work.
    5. So far, I don’t know if I’ll have troubles falling pregnant. My gyno has said that might be a possibility. He’s also recommended that, when trying to fall pregnant, I should at least see my GP to discuss potential problems. He also suggested that I should opt for a cesarean because my uterus might not be able to handle a natural birth.
    6. Surgery didn’t really improve the pain. I mean, it did in some ways, but really, not having periods has been the only thing that has even sort of helped. There is a fair bit of scar tissue from having two surgeries, however; as well as having a burst appendix (because no one believed me about that either, until it was too late. Seriously, a nurse abused me for “wasting hospital time and resources” because I couldn’t deal with a little pain. I had to be airlifted out of my little rural town after two doctors got into a fight – one had decided to do a blood test, and saw my antibodies were out of control – and another felt that I was just ‘stressed’ and ‘making it up’. She won the fight – fortunately – and by the time I reached a city, and they operated, my appendix had burst) I think that’s not helped in regards to scar tissue and damage. (I know they’re separate organs, but my appendix ruptured before they operated, and caused a bit of damage internally. I don’t understand doctor language, but my mum, who’s a nurse, said it was really bad when she heard and read the report.)

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