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Lisa’s Story (Endometriosis)

Yellow RibbonI was 12 the first time I got my period. Not long before (maybe 6 months), I walked into my room to see my mum putting something in the bottom of my chest of drawers. I asked her what she was doing, and she replied, “One day, you’re going to start bleeding down there. When you do, put these on your undies,” and then walked out of the room. I’d already had the period talk at school, so I wasn’t really fazed. So when I started my period, I figured I knew all there was to know.

My first period was probably my only ‘normal’ period. Within a few months, I was always bleeding onto my clothes. Every afternoon, my mother would complain about having to soak and scrub my undies and pants (I was a bit fat and never wore skirts…. ever). I became the ‘feral’ kid at school, and my girlfriends wouldn’t let me sleep over if I had my period because “You can’t bleed all over my bed and stuff….. That’s so gross!”

High school started, and about 2 months in, I had a leak. A new friend I had made said she’d go to the toilets with me to skip a few minutes of class. I was wondering why we were going to the toilet, and she told me to grab a pad. I looked at her blankly. She said, “Um, ok, we’ll go to the office and get one.” Then, probably from the confused look on my face, she says, “Are you new to this? You know you have to change it often, right?” I felt so embarrassed that I burst into tears. That was the first time I had EVER heard anything about having to change a pad other than just going to bed at night. My mother literally told me nothing.

At 14, I was bleeding so heavy that every time we’d change class, I’d change my pad (single lessons were 45min, double lessons 80min). I was also noticing that other girls would mention they were on their period, but didn’t seem to be in pain like I was, or they weren’t pale like I would be. They’d join in on sport, and I couldn’t. I tried to talk to my mum about it. “It’s normal. You’re not a special case,” she said. Sometimes she’d give me Panadol, and when I’d be writhing in agony, she’d give me a small (small for an adult, HUGE for a 14-year-old!) glass of sherry and send me to bed. After about 6 months, I told her I wanted to talk to our doctor about it because other girls weren’t like me on their period. So we went. I told him everything. He ran a urine test and wanted a blood test. He said he had to talk to my mum for a moment. I overheard him tell her that I was attention seeking and that if she ignored me, in 2 to 3 months I’d stop. That was the first time I questioned if I was actually experiencing what I thought I was.

I had my daughter just after I turned 16. I was mentioning to a doctor how great it was to not be having my period because of how heavy and painful they were. He and a nurse (it was said again in the hospital when I had her) told me that after the birth, my period would be less heavy, less painful, and wouldn’t go on for as many days (6 days was my normal period). I was so happy. Wow, a baby and better periods….. aaaawesome! 3 months after having her, there was no difference.

At 17-and-a-half, I brought the topic up with my GP again (the same one who said I was attention seeking) as they were heavier and more painful, nothing like I was told it would be after having a baby. He didn’t care. He told me that I was just “a bit of a sook about pain” and that “women all over the world go through the same thing without complaining.” Again, I thought, hmmm, maybe it is just me being a sook. At 19, I went back to address the topic AGAIN (I know, stupid right). This time his response was, “Ok, Lisa, this is getting ridiculous. Here’s what I’m gonna do. I’m going to send you to a behavioral specialist so that you can realise once and for all that there is NOTHING wrong with you!” There were 2 other ‘incidents’ with him shortly after that made me realise he was shit.

The next doctor after him, a female, told me that pain during a bowel movement (to the point of almost passing out) was normal because “everything is already tender in there, so of course there will be pain.” I tried to tell her that this was a relatively new symptom, and she responded with explaining to me how a period happens, to which I cut her off and told her I had already learnt that in sex ed in high school. My last straw with her was a couple months after that. My partner rang the surgery to see if they’d see me because I was refusing to go to the hospital (twice the hospital staff accused me of being a druggie so I never went there for period pain again). They were just about to close but could hear me crying and screaming in the background, so they said to rush me in ASAP. I got there, and after 20min of writhing in the waiting room, she finally came to get me. She asked me what was wrong. I told her. She sighed, stood up and said not to move…. like, duh! She came back with a needle. I can’t remember what it was, but she jabbed it into my thigh, turned to put it in the waste bucket, turned back and asked how the pain was. “It’s getting….” was all I got out before she snapped my head off and said, “There is no way you’re in pain after that!” To which I replied, “If you had let me finish….. Actually, you know what? I’m done with you. I won’t be seeing you again,” and I walked out. As I did, I heard her say, “Like that’s a surprise.”

The 2nd doctor after her was my saving grace. The first time I brought it up with him, he asked why I didn’t tell him the first time I saw him. As he had replaced the doctor I was seeing, I assumed he had seen it on my file. So he went through and read it and read the files I bought with me from ‘the bitch.’ He immediately took note of her name and told me he was going to make a complaint about her. He was so sympathetic, and I wasn’t used to it. He put in a referral for a specialist and marked it as ‘priority.’

6 months later, he was making a complaint about the so-called specialist I saw the first time at the clinic. This doctor bullied and humiliated me into going on the 3 month contraception injection. My best friend was with me, and she wanted to strangle him. “YOU are JUST a patient! I AM the SPECIALIST, and I say this WILL work! You’re doing it, or you can leave!” He said this when I told him I had already tried it, and it made me bleed for almost the entire 3 months. He said I needed to be on it for 9 months or 3 with lots of shots. At the end of the first 3 months, I went back and was (at first) relieved that a different specialist was seeing me. I tried to tell him that I was bleeding almost every day and that there was severe pain with the bleeding and that clearly it’s not helping. He said, “Well, it says here you have to be on this for 9 months. That was stated by a senior staff member, so that’s what has to happen.” I left in tears….. and with another dose in my system. Almost another 3 months later, I went to my beloved GP for advice. The longest stretch of bleeding I had was 21 days! The pain was so severe that, in sheer desperation, I took 7 codeine pills at once to try to get some amount of relief, no matter how small. There was nothing he could do for me.

I went back to the specialist clinic and took my partner with me so that I had backup to refuse the next injection and in case I was going to be bullied again. This time a lady saw me. The first thing she said was, “How have things been going?” and I burst into tears and couldn’t talk. My partner had to talk for me. She wheeled her chair over to me, took my hands and calmed me down. When I was calm, she told me to tell her absolutely everything from the beginning of my period woes to now, but especially the last 6 months. When I finished, she was teary eyed. She asked why I hadn’t mentioned to the previous specialist that the shots were no good. I said I did, but he said I had to. She looked at my file and said, “Nope, he didn’t note it.” I got upset again and cried that I told him I didn’t want another shot. She assured me that she believed me and that she would be “having words about him about your treatment because this is disgusting.”

She told me that there was no way she was giving me another injection, and she was instead booking me in for a laparoscopy and putting it through as urgent. I don’t hug strangers, but hugged her so damn tight!

So, 16-and-a-half years after the first conversation with a doctor about my periods, I was diagnosed with endometriosis. The surgeon’s exact words to me before he let me go home were, “So, yeah, it turns out that you do in fact have endometriosis. Um, it was quite a mess in there actually.” He told me all the details and showed me pictures.

Oh….. my….. god! Those words went through my head for days. All those years of being treated like an attention seeker or a druggie. All those years of doctors talking to me like I was stupid or mental. All those years, and THEY were the ones that were wrong! My mum called the day after the operation to see how I was. I told her that not only did they find endo, but it’s also quite extensive and severe. Her response? “Oh, so there was something wrong after all? Ha, who knew, hey?”

The stupid thing is though, all the years that people (not just doctors, friends and family too) would laugh about how much of a sook I was and all the “Pffft, she cries over her period…. I mean come on! What a sook,” I never once realised that I’m not intolerant to pain. I was barely 16 when I had my daughter, and back then, in a small town, I was treated like shit. I had her without ANY pain relief, not even gas. Nothing was offered to me…. NOTHING. So while I was in agony with my periods thinking it’s all in my head and I’m just a sook, it was bullshit. I never caught on to that until recently.

Any way, it’s been almost 4 years since my surgery, and my endo is back with a vengeance. I’m now in pain on a daily basis. My period is now every 3 weeks instead of the ‘clockwork’ 4 weeks it used to be, and I have to change my pad at least every hour. I’m on tramadol for the pain. I’ve been waiting 12 weeks now for a letter with an appointment date for a specialist. I’ve been told that a patient with confirmed endo is not a priority because it’s not life-threatening, and I could be waiting up to 2 years before I see a specialist and maybe a total of 3 or 4 years (including the previous 2 years) for an operation if that’s what they choose to do. My life has just stopped. And nobody (medically-wise) seems to give a hoot!

Submitted 12/29/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Charlie

    Hi Lisa,

    I just finished reading your journey. I say journey because it takes strength to endure what you’ve had to and still keep your head up.
    I have Endo as well. I am two years after diagnosis and my pain is back. I’m on Tramadol as well and have had to double my prescribed dose to even manage my pain.
    I have learned that we have to fight for our health and fight to be heard. I am asking you to keep fighting even though there are times when you have no more strength.

    I wish you well and hope you find some level of relief soon.

  2. Leah

    Oh, Lisa! I’m so sorry!

  3. Caroline

    Hi Lisa,

    Wow! You have been through a long journey and it’s not over for you yet!

    I’m in New Zealand and was diagnosed with Endometriosis in January 2014 at the age of 21. Also diagnosed with Adenomyosis in November.

    Just wanted to say that I understand the fight you have been through to get diagnosed in the first place. The relief you feel when you have a name for what you are going through can be short lived though, as it’s a continuing battle to be understood and get the treatment that you need. And then it just keeps coming back!

    Keep on fighting Lisa. You are so strong and you will get through this.


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