Tuesday, September 28, 2010

four years minus nine months, cont

{I'm still writing about the last four years. I finished the post I started to write in June twice and I deleted it twice. I started again and decided that if I ever was going to post it I should do it now, in pieces, as they materialise. I plan to finish my story before the babies are born. That gives me anywhere between a day and 5 weeks. It's anyone's guess.}

It's 1997 and I'm 12. I'm standing at a traffic crossing in Kings Cross, London, dressed head to toe in red velvet. It's the Easter holiday and I am visiting the capital with my grandparents. We are standing waiting for the light to change when for the first time I feel it, an evil clench of pain in my stomach, burning claws digging into my flesh. For one insane moment think I have been been shot (it's London, anything's possible). I gasp and double over but the traffic is too loud and the pedestrians too intent on getting where they're going for anyone to notice. Within seconds the pain is gone, the lights have changed and I am on the other side of the road.

At 14 I start passing out with regularity, every fourth Monday finding myself in the middle of the night with my cheek pressed to the bathroom floor and every fourth Tuesday missing the morning's classes as I am allowed an extra hour in bed. Over the next few years the imprints of many bathrooms, some kitchens and a few hallways gather on my face. My Gran's downstairs bathroom is the best, wool shag pile being more forgiving than cold linoleum.

In 2000, aged 15, I visit the doctor for the first time. She suggests a hot water bottle and tells me that my pain is normal. My mum starts buying the strongest painkiller she can in boxes of 100 whenever she visits the mainland, it not being available on the island without a visit to the doctor. Who thinks a hot water bottle is what's needed.

It's 2004 and I'm 19. The pains are worse and I have taken to passing out more frequently. I now live with a boy who has wooden floorboards that are pleasantly springy. He's a worrier though and once again I head off to the doctor. It is around this time that I begin to suspect that I have endometriosis and ask to be referred to a gynaecologist. The doctor, a stand in whom I've never met before frowns at me looking puzzled and prescribes a medication for heavy periods. I don't have heavy periods, I have cripplingly painful periods. As I leave the surgery I crumple up the prescription and throw it in the bin, wiping tears of frustration from my face with the rough sleeve of my coat.

In 2000 I turn 20. I now spend two days every month completely immobile, curled into a ball. When I stand up I fall down. I need help getting to the bathroom where the pain does nothing to reassure me that I'm not having my womb ripped out. When those two days are over I spend the next three in an exhausted stupor, the previous days having rendered me completely and utterly useless. Pissed off and having had enough I decide to bypass my GP completely and make an appointment with an independent women's clinic. They take one look at me and refer me to a gynaecologist.

Six months later I'm sitting in the waiting room of the hospital, watching the heavily pregnant women in pyjamas and winter coats huddle under the doorway trying to keep warm while they smoke between contractions. I meet said gynaecologist who laughs at me and assures me that I don't have endometriosis but she will willingly perform an operation just to prove that I don't have endometriosis. Two months later I'm back in the waiting room, three small wounds in my stomach and desperately wanting to go home. I've just come round from the operation and have been diagnosed with endometriosis, stage III (aka: severe). My brain still addled with morphine and general anaesthetic, I am told that if I ever want to have children I should probably do it now.

* image by Pat Pat


  1. I can't even imagine how this feels, but it makes me upset/angry/bewildered that this was dismissed so easily out of hand by all those people you saw. I can only begin to try to imagine how you must have felt physically and emotionally.

    This makes me even more delighted that you're pregnant, and with two at once!

    Enormous hugs, love, respect and so much more. Xxxx

  2. 1.) WTF is wrong with the doctors?
    2.) I really just want to give you a hug.
    3.) I'm so glad you're having 2 bubbies and that you've had a healthy pregnancy. So very, very glad.

    <3 <3 <3

  3. i give a damn about you.

  4. Oh lord, my dear. Oh lord.

    Doctors. What is it with women's pain and dismissing it? I have a condition that, if I end up seeing the wrong doctor, "doesn't exist" and is "all in my head." Yes, some people with it are bedridden with a constant morphine drip, but those people just have crazy imaginations. Of course, they used to think menstrual cramps were hysteria as well, until they figured out they could sell us stuff for it. F*ck.

    I'm so glad you're finally telling this story, and so glad your finally having two (TWO!) babies.

    Hugs, and cheering for you being so brave. CheercheeercheercheerCHEER!

    and (((())))

  5. It's so sad that doctors treat patients like this and don't LISTEN to them. I'm so glad you finally were able to get one of them to come around and diagnose you properly.

    Also, sending such good thoughts your way for your babes. You are a brave and strong woman.

  6. right now, there is nothing i want more than to hug and squeeze you so tight.
    (not too tight, obviously)

  7. Oh my, how horrible for you. I can't imagine how that all must have felt, especially knowing that it was worse than they insisted it was and not being able to get them to really help you. Thank you for sharing this - it's good to read it knowing that despite the hard times, you're now pregnant, and will have your two babbas very soon.

  8. My god you brave woman, and my god what a shitteous time you've had. The incompetance of the doctors floors me.

    And my god- TWINS!

  9. Thank you for being so brave and posting this, it helps to know you're not alone. hugs, emma

  10. p.s On an all together different note, Im also a little bit in love with your 12 year old self in head to toe red velvet.

  11. Urrgh... "just to prove that I don't have endometriosis"! I really can't understand some doctors!! I hate that they can be so flippant about something that is very obviously having a major effect on someone's life! Passing out is not normal! Grrr.

    (My own experiences with doctors unfortunately pretty much confirm that if it's not something simple/obvious/terminal, then they treat you like you're making it all up.)

    As well as feeling all grrr for you, also feeling very smiley that widdle and puke are on their way :)

  12. My mother had the exactly same experience about 20 years earlier. She wasn't diagnosed until she was in her mid 20's. While she struggled for 5 years to get pregnant with me my brother was easier and my sister was an accident. She also noticed that because she was pregnant or breast feeding for about 10 years when she did start getting her period again they were nearly pain-free. I was able to get on birth control pretty young so I was able to avoid the scaring but I'm still concerned about getting pregnant when we start trying in a few years.
    Congratulations on a healthy pregnancy and I hope the next few weeks go well!!

  13. I have the same condition. Meaning I was bedridden for a few days every month, throwing up constantly, not being able to stop moving my legs because it helped take my mind off the pain. The doctors laughed at us. One doctor did the surgery for the exact same reason, and was surprised to see it splayed all over my lower back muscles. I hope to have children someday. You give me hope that I can. I wish you the best possible life for you and yours.

  14. I'm glad you're posting about this. Thanks for being brave!

  15. Actual sigh.

    I have spent 10 minutes trying to offer good words to no avail.

    Big gentle huglets instead.

  16. I want to throttle all the doctors in the world for you.

  17. This post is really interesting and well-written. Thank you so much for sharing your story, I know it can't be easy. I look forward to reading more!

  18. i think our uteruses have something in common. i'm glad you shared this - it makes me want to go back to the doctors and tell them i feel like i'm giving birth to a swiss army knife EVERY. DAMN. PERIOD.

    glad you managed to get through to the 'professionals' and hope the last nine months have given you a well needed rest from the torment of your womb.

    looking forward to the next instalment already.

  19. I dearly want to come over and slap so many of those doctors up around the head. And then give you a big hug. Why is listening (and trusting) so hard for some of them?

  20. Wow.

    I cannot even begin to imagine what this experience has been like for you, but I am in awe of your bravery and your persistence in the face of so many beyond-outrageous dismissals. Brava to you for putting all of this into words; this is a story that needs and deserves to be heard.

    I am sending you all my support and best wishes for a smooth, healthy, and wonderful next few weeks - and those next 6 months and beyond, too!

  21. God bless you and the little miracles you finally have coming your way.

  22. Shocking. Just shocking. Good for you for persevering for a diagnosis, alas it seems all to common for doctors to ignore the person who would probably know best.

  23. Argh, all teary.

    Just.... fuck.


    Reminds me of being in labour with baby well on the way & being told I had "niggles" and to go home, take a paracetemol and have a nice warm shower. That's when the uncontrollable shaking began... I could've asked to see the senior midwife, just so you know. And once I *was* admitted (to a different hospital) they were great. Especially the gas and air, that stuff is bloody magic. Magic I tell you.

  24. This is such an interesting story, and makes the twin outcome all the more special.
    I agree with all the comments about the crummy doctors you met, and can completely sympathise with you as I have met one of two useless doctors in my time.
    Thank you for sharing your experience, it can only serve to help others.

    p.s. Do twins run in your family?

  25. I cannot wait to read the rest of your story. This is fascinating - and the best part is the happy ending - two beautiful baby girls who we've yet to meet :)

  26. Being a gynae nurse myself, it saddens me that I have heard so many similar stories and experiences to yours, when it come to Endometriosis. I think finally doctors are getting better at diagnosing it, but it is awful how so many women have had to wait and suffer for years with such a debilitating condition, before being given a definitive reason and treatment for their pain.
    Thankyou so much for sharing this, how amazing that you have 2 obviously very much longed for babies on the way :).

  27. oh god...why did they dismiss your symptoms..

    I'm so glad you went to that women's clinic, and that you are now expecting 2 babies!

    hugs for you and thank you for being so brave and for sharing!

  28. happy outcomes. i'm glad you are telling everyone though to persist if they are not getting proper answers.

  29. this was brave and amazing, just like you

  30. I somehow missed the first post in the series, peonies. But wow.

    These words, they are big and scary maybe, but they are just a part of your life and your story and I cannot imagine you thinking they would be received with anything but lots of blog love.

    If you can't use your little space on the internets to really tell your story, then what is it for anyway? There are so many many women out here who will be heartened and hopeful when you tell them how it went for you.

    love love to you and your babies and your little family. Maybe even the rabbit.

  31. Thank you for writing this. Sometimes the arrogance of doctors astounds me. I suspect that because it is a womans problem it is harder to diagnose, not that it makes it any better, but perhaps men have no idea how to compare the pain levels. I am so glad that you finally got to where you are now.

    It gives me hope. (It took me from getting my first period at 13 until I was 28 to have endometriosis diagnosed). And I know that cheek/floorboard feeling extremely well.

    I am SO glad that the babies are almost here. You and N are going to be the best parents.

  32. Beautiful post. Thank you so much.

  33. thankyou xx

    and why WHY are there so many stories like this?

  34. my dear peonies, that IS a big and scary! boo to the doctors. knowing this makes me all the happier that you have two little ones who will be with you soon!

  35. eff all the doctors.

    i was told i wouldn't be able to conceive. so there ya go. probably not nearly as frustrating as KNOWING your diagnosis and not being heard. but that little "whoopsie" that we heard from the doctor 5 months ago was... interesting.

    way to go for putting it out there like this. brave brave lady. (with TWO babies- so take that, dumbdoctorface.)

  36. This is so awful, except that I know you are pregnant now and that makes it somewhat less horrible. I not only want to throttle the doctors, but I want to give you a big hug. Poor muffin - that's a lot to endure at a very young age, and the confusion and pain must have made you feel very alone.

    Anyway: HUGGGZZZZZZ for you.

  37. Those doctors are the worst of the worst =[ I'm so sorry you had to go through that <3

  38. this was heart breaking to read. But so glad I did. I hope for a healthy pregnancy and healthy babies. It will make it all worth it.

  39. i am so sorry to hear how miserable hormones have made your life over the years. its frustrating to want and need help and not find anyone who can help you. as a doctor myself i know how hard it can be to make diagnoses, but we aren't all bad- i promise.

  40. That must have been a very scary and very very shitty time for you. Good on you for being persistent.

    I know a few different women who've suffered endometriosis, including a friend in high school who suffered it severely and had surgery. I don't think any of us knew exactly how fucked that must have been for her, but you're making me rethink it.

    Good on you for being brave. Good on you for kicking through and soon having two little babies to play with. xoxox

  41. I'm so glad you decided to post. Just know that by pushing the "Publish Now" button, you're empowering others to be persistent and to pester their doctors until they listen, and that is worth more than all the money in the world. Your pain will ease the pain of so many others, and that's powerful! I think you're braver than you realize! :-)


  42. Oh my god. I'm there. Right now. With not as much pain, but the same experience, except at 14 I knew I had endometriosis. And at 23 and newly married JUST told that if I want to have a baby, I need to do it now. JUST. As in yesterday. And god its so much. What do you do with that?
    But after this I know, I'm not alone, and things are going to be okay. I feel like you just hugged me. But not in a creepy way. Thank you. Thankyouthankyou.

  43. I hope it is as powerful for you to write these words as it is to read them.

  44. Hi Peonies, I have been reading here for ages and never comment but this is something that is so important for women out there - i think 'period stuff' is often another place where women bring down other women (like Meg talks about)- I never had periods as bad as yours but threw up most months and had cramps that needed pain relief and I remember one female sport teacher who obviously thought that girls who needed to sit out the lesson during their periods were just being girly and whiny or something - cos you know she had periods too and they aren't that bad! No recognition that they are worse for some people and I am sure there are many doctors the same.
    Sharing your story is brave and I hope it helps lots of girls/women realise they deserve better.

  45. You're very brave. And doctors are very dumb. But I think your story is going to have a happy ending and that part is nice. Can't wait to read the next bit.

  46. I have endo, too, and knowing you are pregnant is a great comfort to me, because my doctor told me I had endo this way:

    "Yeah, you probably can't have kids, but you don't care about that because you're a lesbian, right?"

    "Um, I am a lesbian, but what do you mean I can't have kids? What's wrong with me?"

    "Oh, you have endometriosis."


    Are you on the endo diet? (no gluten/soy/etc?) I'm trying to do it, but I'm wondering how helpful it will really be.

  47. YES to what Jacqui said!!! I come from a line of women who had endometriosis. I didn't have it myself, but my periods were always super heavy and the PAIN was off the charts!!!

    It makes you feel very alone trying to function in a world of schedules.

    Worse, having a tubal ligation at 35 made it even heavier and MORE PAINFUL as if that were possible. I went on prescription painkillers.

    I finally had an endometrial ablation which helped tremendously compared to what it was.

    I remember complaining to my doctor about how unmanageable periods were and he looked right at me and said "It's not this way for most women."

    Oh. I had lost sight of that.

  48. Such mixed feeling reading this - anger at the dismissiveness of the string of so called health 'professionals', awe and respect at your bravery, happiness that you have twins on the way that will be so, so loved.

  49. Reading this makes me so angry on your behalf. Doctors sometimes....pah

  50. Very emotional post and so incredibly brave of you to post something so personal. I am so sorry about your pain and hope that it will get better instead of worse. Congratulations on your twins with this issue looming.

  51. oh my goodness. i would love to give you a hug. this must have been so hard -- all of those years. xxo

  52. Thank you for posting this!
    I'm 36 and have been struggling with endometriosis for more than 24years. I've had 2 operations in the past 10 years to clean the endometrial lining and remove ovarian cysts. I met the love of my life 3 years ago and we're trying to have a baby for the past year. You are giving me hope :-)

    Can't wait to read the rest of the story!


  53. Poopface doctors, sometimes you just know somethings wrong. I'm so glad things turned out so wonderfully for you! You deserve it! <3

  54. I'm so glad you posted this. I have endo, and I'm pretty sure infertile. I've been trying to run a 5k for a year now and can get to two miles in around 25 minutes. I have chronic fatigue and the worst cramps. Thanks for making me feel less like a crazy person when I try to explain it.

  55. What a beautiful and painful and brave story, and what courage you've shown in posting it. So necessary too, because too, too many women out there will identify with it. Because female syndromes are notoriously misunderstood and dismissed by a profession that is still far too male, in its attitudes even when not in its actual gender (although, my cohort and those below are mostly female, so if we can get our arses in gear that should one day change). Even I've experienced this, myself a doctor, although not to the degree that you have had to endure.

    And, this is what I wanted to say the first time round, but couldn't manage to find the words for. This, and to send you all my love. xx

  56. Thank you for telling your story. I have endometriosis as well as PCOS and had my first doctor insist repeatedly that I had none of the above (I was seventeen at the time). I finally found one who would listen, and that man remains one of my heroes to this day.

    There are few things worse than being told by doctors that you're "crazy" or "just making it up." Many hugs and love to you all the way from Texas. Your blog and photos make me happy.

  57. thanks for being brave enough to put it all out there. it'll make a lot of women feel hopeful and heartened and angry at stupid, neglectful doctors. i'm so so happy for you and n and w&p and rabbit. :)

  58. Thanks for this post. I have endometriosis too and it is a comfort to hear you are pregnant! I've tried so many things like diet changes and acupuncture and herbs and yoga and on and on. I worry about having to miss too much work for the pain. Check out the International Endometriosis Association, based in Milwaukee, WI - they do some great, empowering work.

  59. I just want to give you a big hug. I am glad we know the happy ending to this story already or I couldn't bare it. I'm angry and upset for you. I'm also so glad you posted your story, it's important for you but also look at all the people you are already giving hope and support to.

  60. I really hope you gave them the finger and screamed I TOLD YOU SO when they proved that you did have endo.

  61. Such bravery. Such clarity. What an insult to your self-knowledge those doctors gave you. What a gift you're giving us by sharing your story.

    A friend of mine discovered she had endometriosis at 40. She and her new husband tried having children via IVF with a donor egg. Didn't work.

    I'm so happy for you that you're having twins.

  62. Brave Peonies.
    Kindred Spirit.
    I know what you speak of.
    Me too, the passing out, vomiting from pain, the whole shitty thing.
    I am so sorry.

    One of the first things I said to DB after having given birth to Finn was "that wasn't as bad as my periods".
    No shit. Labour was easier. I had no pain relief. And I got a baby at the end of it.

    I have just started getting my periods again. Two blissfully relatively painless months. I hope it lasts. And I hope it is the same for you.

    I also hope you are getting loads of rest in anticipation of jumping planets to a whole new world.

  63. It might turn one's life upside down, all that. To have getting pregnant as soon as possible become a goal so young. It's amazing, really, that even so you've done so much in the other areas of your life. I hope that blogging, the Internet, all this stuff that is sometimes so annoying, sometimes just a bunch of fingers typing, has also given you a lot of what you deserve. I mean, recognition for your talent, and maybe some de-bigging and de-scarifying.

    I am searching for something to say that might allow you to feel, over there in Scotland, the warmth in my heart for you and your husband and your babies. Such as I can know you all, of course, from fingers typing and cameras digitizing. I hope all the benefits of your self redound to you. To Nye. And to your babies.

    You should know and believe that your self also brings many of us actual happiness. I am glad you exist.

  64. Apologies on behalf of doctors.


  65. Beautiful post. Thank you for posting this, you are not alone. My daughter in law is going thru this right now also, and we are hoping that there will be a happy ending with them too. Being persistant with doctors is definitely a must. So many doctors brush things off so quickly without checking things out further. Glad you kept trying to find the answers for yourself! xxoo :)

  66. I don't remember when or how I found out about your pregnancy. Maybe it was visiting your blog or through Project Subrosa. I just know when I found out, I was not in a congratulatory mood. It was some time after I lost Isla and could not stand the happiness of pregnant women and babies. But then I read about your difficulty to getting where you are now, way back when you tried to tell your story. I waited for a follow up and when I read this post today, I quietly got up from my desk in this university in Edinburgh and went to the private bathroom and bawled my eyes out. Your post reminded me my suffering with fibroids, the idiot doctor who thought all I needed was a higher dosage of BC pills and extra strength prescription meds, missing school and bearing witness to a very much abnormal loss of blood and tissue. My sister has endometriosis and I remember us both vomiting from the pain of our cycles and silently wondering how this would affect our still abstract plans for motherhood.

    In the midst of my grief and slow resolution, I can finally say, truthfully, I am so, so happy for you. I wish you nothing but a safe delivery and abundance of joy in your new babies. Please continue to post your story. It's an issue many people don't talk about and I appreciate people like you who put it out there. xo

  67. I am sorry I'm so late on this, but thank you for sharing it and I'm glad we're able to read it knowing where this story goes (i.e. that there is eventually a silver lining past all this pain). It sounds like a truly terrifying experience, and I am so, so sorry that you had to go through it. You are one strong woman.

  68. Thank you, my brave friend, for writing this, and for sharing it. The post made me proud of you but the comments even more so. You're comforting all these women, it's amazing.

  69. Peonies, I only know you from this blog but I am feeling a lot of things. Gratitude and pride that you had the guts to start posting the story, first off. Mostly, though: awe. Awe that after years of being refused the care you deserved and then being casually told to step up your family plan STAT, and then trying for children for four years (an experience that I can only imagine was indescribably hard) that you have still managed to live (from what I see on the blog) a wonderful life with N, start your own business that based upon your intense creative talents and is now flourishing, raise happy bunnies, buy and remodel a home, and communicate with/move so many people all over the world through this blog. AND NOW you are going to have twin little ladies to add to the list of amazing things in your life that you have made happen in your life. I am so, so happy for you and N.

  70. First, I didn't know there were doctors who so quickly dismiss such pain. Having that severe pain with periods is not common, but it is by no means so rare that doctors can ignore it.

    Second, any doctor who would do a procedure to prove you DON'T have something is not an ethical doctor. Doctors are to cause no harm, and an unnecessary procedure certainly causes harms. Thank goodness that doctor was WRONG and you had a diganosis.

    I'm so sorry you had such horrible experiences, both with doctors and with endometriosis. And I'm so glad you're having such a good pregnancy.

  71. sorry to hear about the ups and downs with doctors. I swear they really can give the run around ugh. Happy to hear you are pregnant with twins no less! how exciting.

  72. It's so painful!
    I know what you feel and it's so good that it's not a problem to find good gynecologist here in St. Petersburg - you know - 5 mln population, best clinics in region. I've never thought than somewhere in western states you can't buy pills or visit good specialists.
    Warm hugs!

  73. My mom had endometriosis. She called me her miracle baby. Then she went on to have my brother, two years later. Your post made me so angry at your stupid doctors. Blood boiling. Glad that after all the pain and frustration you're so close to a happy, baby-filled outcome!

  74. I keep trying to comment here and getting too upset for the using of words. So: ____________________. It is all the words I would say if I had them. And this: You are the bravest one.

  75. You are very very brave and I can empathise with the courage it must have taken for you to post this. As you know It is sheer misery not only for the violence of the pain but for the total loss of energy and the most intensly almost demonic like moods alongside the dismissiveness of most people.

    I am SO glad for you in everyway possible that you are pregnant with your twins and I want you to know you are often in my thoughts and will always be.
    Love Kitty xxx

  76. Bravo! Just bravo! You are an example for us all.

  77. I have something called "Secondary Dysmenorrhea" doctors think it's normal but I found out on my own, they never told me what it was called instead they gave me birth control and painkillers to "control my period" i don't want to control my period I just wanted the pain to go away.

    This is how I feel:

    -in the morning there's a sign that today is the day when I feel very exhausted and don't want to wake up and my body feels sore

    -my body temperature goes weird and I'm suddenly freezing

    -it can be 90 degrees F outside, I will still feel frozen

    -my body goes thru hot and cold flashes, one minute I'm freezing then I'm sweating and then I'm sweating meanwhile if you touch my sweaty body you feel ice cold

    -everything bothers me and I get VERY depressed

    -the pain feels like freddy kruger is inside my uterus slicing me from the inside

    -my flow is heavy but it is difficult for it to come out

    -I can't eat or drink and if I do I throw up the moment I swallow

    -Water tastes like poison

    -I throw up my pain relievers [Pamprin, Aleve, Advil, etc...]

    -it's veryyyyy difficult for me to stool

    -i have to pee every 30 seconds

    -the pain from 1-10 is a 20! I would lay on my bed crying and screaming because of the horrific and excruciating

  78. I too suffer from pains such as these and as a young, woman who hasn't started a family yet, this worries me.I have been a million times to the doctor and there has been no diagnosis. You can't tell if you have endo unless you do the surgery. Having no medical insurance prevents this possibility.
    Anyway, I have done a few dietary things to lessen the pain.
    Cut out all sweets and caffeine, drink apple cider vinegar in water and take iron supplements in the form of blackstrap molasses. Also, the lack of BMs and pain seem to coincide. I heard some women swearing by coffee enemas and I tried it. It helps tremendously as well. Good luck to all.

  79. wow... this is sad. My mom had pain like this since childhood and NO ONE believed her either. She had numerous doctors tell her that its "in her head."

    A few years ago she had a full hysterectomy due to severe tumors and other things that were causing cancer.

    I realize that doctors are human, but how in the world did they get a license to heal?


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