Wrapped in a Nice Red Bow

Dear Endometriosis,

I have had you for a while now, I’ve had symptoms for 7 years in fact. My periods came, and so did you. Wrapped in a nice red bow.

For years, I was told you didn’t exist, that I was a weak-willed young girl who cried wolf; but I knew you, I felt you - the way you burnt into my organs was apparent every time I bled, and every time I was screaming on my bedroom floor, clutching at my stomach.

This year, I got my answer, but you’d already told me; you’d already whispered it into my ear. I do have endometriosis. I do have adenomyosis.

Finding a monster under the bed isn’t as scary when you’ve been living with it, feeding it, growing it; the monster grew big and strong in the shadows and it was fed by disbelief - but now I am stronger, I am wiser. My bloated belly, and painful joints do nothing other than remind me that I am a temple. I own this body and everything inside.

So Endometriosis, thank you for sticking with me through everything, literally - because you proved to me that I was right, and you proved how much comfort can be found when you accept fate. I love you, and everything you bring, because you are mine.

Imogen, England

“Invisible”

Dear Endometriosis,

You fooled the doctors for 9 years. You have made me miss school, work and social gatherings for over half my life. You have caused me unimaginable pain and fused my organs together. You are invisible to others but sometimes you are all I see when I look at myself.

Sally, UK

Runs in the Family

Dear possible endometriosis,

I feel a bit weird strange blaming all my problems in life on you since I don't even know if I have you yet, but if I do you've caused me so much pain you deserve it.

Hopefully I can go see if you are the problem soon as ms rona leaves us, you've tormented the past 3 (that we know of) generations of women in my family, you've made them hate their periods and caused them immense pain, and now we think you've been passed down to me, thanks a lot mate.

I've missed a lot of my education thanks to you, I've missed out on some many experiences because I've been sitting crying at home because my uterus feels like its been stepped on by a black Friday sized crowd of drag queens in stilettos.

If it is you that's been causing me this pain fuck you, if not, I don't give a shit you've hurt my mum, sisters, cousins, aunties and gran.

Thanks a bunch, love Rory (and her very hormonal family)

Rory, UK

The Ultimate Rejection

Dear my coil,

Thank you for eliminating most of my endometriosis symptoms. Thank you for allowing me to have pain free, enjoyable sex. But why did my uterus have to reject you. Why did you fall out after 1 year of being fine and cause unimaginable pain.

Mille, England

Secret Enemy

Dear Endometriosis,

You’ve ruined my life in every way possible but kept yourself secret for 10 years pretending to be many other things. You’ve embarrassed me in front of my peers by staining the chair with blood through both a tampon and pad at courses. Ruined my reputation at work by forcing me to call in sick way too many times due to period pains and nausea. Put immense stress on me by making sure I can’t attend my classes at uni thanks to fatigue and pelvic pain. Destroyed many friendships and my social life by making me feel horribly unwell and forcing me to stay home. Dangled the possibility of an addiction to opiates by making them the only thing that helps with pain. From the bottom of my heart, f*ck you.

Anonymous, Australia

Passing Out from Period Pains

Dear doctors who ignored me,

I spent my the first 10 years of my period on various contraceptive pills suffering because my periods were too painful to deal with without some form of hormonal control. But the pills messed up my mental health and combined with other events in my life have left me with anxiety and panic disorder. I’ve spent almost my entire adult life trying to get a doctor to believe that my period hurt more than was normal and no one ever took me seriously. I saw 8 different GPs and no one ever took me seriously nor did they do anything but tell me to take pain relief and get a hot water bottle and try another contraceptive. Like I hadn’t already tried all these things. And now I’m in drug induced menopause because after a year of finally being off any hormonal medication and my period getting worse and worse till I cramped for half of my cycle and passed out multiple times each month because I was in so much pain. All of this culminating in me getting a concussion from hitting my head when I passed out from the pain.
I finally got a gynaecologist to believe me and after paying thousands of dollars I’m now on medication to put me into menopause to stop my period so I don’t have to risk passing out and getting further head injuries till I can finally get surgery to confirm a diagnosis of endometriosis.

So now I’m 24 and in menopause having hot flushes and hormonal mood swings and all the other terrible menopause symptoms that you hear about and still I’m happy about that because I’m not passing out multiple times a month.

I understand that the probable endometriosis wasn’t any ones fault but I shouldn’t of been questioning if I was correct about my feelings about how painful my period was since I was 13 and I shouldn’t of had to spent so much money trying desperately to find a doctor who would believe me.

And it should never of taken me getting a head injury from passing out on my period for anyone to take me seriously. And I shouldn’t of spent years being messed around by doctors being put on hormonal medication that ruined my mental health.

Hannah, New Zealand

I Wish

Dear Endometriosis

I wish I knew you existed sooner. I wish you didn't cause me so much pain. I wish doctors knew how to get rid of you. I wish I hadn't been dismissed by my doctors because they didn't believe in you.

You suck.

Beth, UK

Searching For Answers

Dear periods and potential endometriosis,

You have made my teen years a bit of a mess. The disappointment of being sent home on school trip due to my pain and falling asleep curled up on the bathroom floor becoming a regular occurrence. Soon I will have an answer to why this is happening. I cannot wait for my surgery and to finally get a diagnosis or explanation I've been waiting and fighting for answers for too long.

Anonymous

Please Vacate

Dear Endometriosis,

I’d never want to share a house with you, let alone my body. Please vacate yourself from these premises.

xoxo

Anonymous

My Shield

Dear my little pill,

Thank you for becoming my shield against my endometriosis. You have fixed many things and I am grateful to have my life back again. Sometimes I take you for granted and it can get annoying taking a pill every day at the same time and the occasional mood drop can become tiresome. But then I have a break and the pain, nausea, fatigue and pain (again) reminds me that I have a remedy for most of the days of the year and the fact that (for me at least) it is just a little pill is actually very cool. You have even decreased my symptoms of PTSD which is an added bit of fabulous.

Thank you v much,

Anonymous

Flaws in the System

Dear endometriosis,

You first showed up in the form of me having intense pain during penetrative sex. Then I started to become ill every time I had my period while I was on the pill. Then with the hormonal coil, I was finally getting a bit of a break from you for a few years but you sure as hell worked your way through that to the point where I was in debilitating pain. At my lowest, I had full blown contraction level cramps for two weeks straight. However, I don't blame you.

I blame the doctors who did not take me seriously for so long. Who eventually sent me to a psychologist to fix my pain, which was impossible and left me feeling terribly guilty about not improving. I blame the >20 medical professionals I saw over the years who never thought about endometriosis as a possible explanation for my symptoms, I blame the medical system that severely fails to fund research on bodies with uteruses and basically any body that does not belong to a white able-bodied man. I blame the "endo specialists" I saw when I finally figured out on my own that I have endo and then dismissed me based on incorrect arguments (which I learned thanks to the Hormone Diaries community, massive shout out to all of you).

Thankfully with help of this community I finally got the help I needed. Now, a few months after surgery I am stomach pain free, my bowels begin to function more normally again and with physio therapy and psychological therapy I can finally work through my medical traumas, and start getting my body and life back. I hope I never feel you again, don't take it personally but you're quite literally a pain in the ass.

xoxo, your host

Anonymous, The Netherlands

Misunderstood Legend

Dear Birth Control,

The mini-pill? You're a misunderstood legend that just wasnt right for me. You stopped my period but were a lot of effort, gave me acne and made my hair fall out.

Sorry we didn't work out.

Combined-pill? You and I were once perfect for each other, but after my experience with the mini, you turned on me. After 3 weeks of excruciating leg pain to the point that I couldn't walk/sit/stand without taking a heavy dose of prescription painkillers (and a doctor pointing out it could be "a touch of endometriosis" in my legs that was triggered, I decided to end things. You weren't worth my suffering, I had a degree to finish and a life to live.

To my current beau, the hormonal coil. You are a blessing disguised by my uterus. Yes we have our ups and downs (the horrendous acne, hairfall and cramps for the first few months, and you giving my boyfriend’s penis a prod on occasion), but I'm down for the long term commitment if you promise not to be a dick for too much longer. I don’t believe in soul mates or "the one" but you might be the closest I've gotten to it so far.

All that said, to all of my birth controls, I appreciate your service. You will never be forgotten, and I will always remember that you stopped me from reproducing when I didn’t (and currently don’t) want to.

Lots of love,
Hannah

Hannah, Scotland

You Could Have Warned Me

Dear IUD,

I got you to stop my periods and hopefully the pain that comes with them from my endo and you do that well! I can work and go for walks on my period now, and my bleeding is very light.

That said, why didn't my doc warn me that my first period with you would be so much worse? I was so freaked out when I was in more pain than normal and when I called the doctor she said it was 'not unusual'.

It would also be nice if you could convince my PMS to leave, but the lack of bleeding is enough for now.

Anonymous, Australia

*Side Eyes*

Dear (possible) endometriosis,

I've been trying to get you diagnosed for years now, and I know it's not entirely your fault that hasn't happened yet (side eyes to the centuries of women being excluded from medical research). It just would be really nice to find a way to deal with whatever is going on with my uterus, and if it's you for sure.

So, endometriosis, if it's you causing me this trouble, please just calm it down. It's not been a fun ride these few years, heavy periods, agonisingly painful cramps, fatigue, back pain and abdomen pain both on and off my period, and all the rest of it are a bit rubbish.

Maybe, once I know, I could forgive you. For now, I'll fight you as much as I can.

Anonymous, UK

“I Can’t Find Your Cervix!”

Dear retroverted uterus,

Why? Just why?

You have made my life so much harder for no reason. I have always had horrifically painful periods and was on the pill for 6 years straight and so I had the hormonal coil inserted a couple of years ago when I was 17. Luckily, it was inserted during a laparoscopic surgery investigating endometriosis, which was deemed inconclusive. So this meant I was under general anesthetic and didnt feel a thing- perfect! When I came round, the was no mention of my retroverted uterus on the notes just that the coil had been inserted.

Flash forward to a month or two later, to my examination at the GPs to find to my horror that the pelvic exam HURT LIKE CRAZY! I had been told it would be uncomfortable but not agonising like I was experiencing. I had never had sex before so it was extremely scary to begin with, let alone the fact it was really painful. The lovely nurse discovered I had a retroverted uterus, that was somehow not picked up but she could not find my cervix to check if the coil was in the correct place. It took half an hour with me writhing on the table, only for her to say "I really can't find it, I can't find where your cervix is". I was sent away with the advice that it was probably in the right spot and once I have sex for the first time, it will be much easier and less painful.

So thanks to you Uterus, I have a coil situated somewhere in my body, and the expectation and pressure to have sex so I can be in less pain during examinations. Thanks a lot.

Signed, your unhappy friend,
Freya

Freya, UK