EOFY SALE NOW ON- SELECTED STYLES & SIZES. FREE SHIPPING AU AND NZ ON ORDERS OVER AU$120
EOFY SALE NOW ON- SELECTED STYLES & SIZES. FREE SHIPPING AU AND NZ ON ORDERS OVER AU$120

Shopping Cart

0Item(s)

null

0Item(s)

Subtotal $0.00 AUD

Discovering Adenomyosis

Last week, I nervously awaited my appointment with the gynaecologist. After starting my Instagram account @MyPelvicPain, to raise awareness and to share my experience with my pelvic floor disorder I now had a new avenue to go down. So many, loving, supportive gals got in touch and asked me if I had ever investigated Endometritis, I had not. The more we chatted, the more I learnt that we shared similar symptoms, that bladder and bowel pain were also symptoms of endo and that the average time before being diagnosed is 7.5 years. So here I was, at the gynaecologist clinic, ready to get some answers and boy did I get them.

So, I went in, letters upon letters of my medical history clutched in my hands and was directed to the familiar table, white paper already laid out for me. I was then given an internal vaginal ultrasound, by what I can only describe as an ultrasound dildo?! And there we had it, silence. Usually during scans or tests you have some chit chat, discuss the weather, something to do with the news, oh do you have any siblings? But nada, it was quiet and still and then it was over. My scan had confirmed Adenomyosis and suspected Endometritis. My head was spinning, I had heard about Endo, but Adenomyosis I hadn’t a clue about that and I’m going to assume you haven’t heard of it either. But I am so grateful to have received this news now, so I can share with you what I have learnt about this often common, misdiagnosed condition.

Adenomyosis (ad-uh-no-my-o-sis) is when the endometrial tissue that lines the uterus grows into the uterus wall. This can cause incredibly painful periods and an enlarged, swollen uterus. There currently is no known cause of the condition with the only cure being a hysterectomy.

The most common symptom is intense pain during your period. I’d always experienced pain that would make me double over. Intense stabbing under my belly button that would leave me with nausea and the feeling you get when you stub your toe. I’d brought it up, many times throughout my life. I’d explain it to my doctor or nurse, and they’d shrug and just confirm what we’ve always been taught, periods are painful. I’d just keep pushing myself on, ignoring the pain and assuming every other gal or those assigned female at birth were suffering the exact same thing.

Sarah Rose in her Modibodi Classic Bikini

 

Other symptoms include bleeding between periods, uterine cramping, a tender & swollen uterus, painful sex, a pressure feeling in your bladder or rectum and painful bladder and bowel movements. These symptoms can make it impossible to continue life as normal when on your period or in a flare, with some experiencing the symptoms daily, regardless of when their period is due.

According to the NHS, up to 1 in 10 women are affected by adenomyosis, yet a third of them won't know they have it as they don’t experience any symptoms. The method to get a diagnosis can be tricky, but the common route to go is having an internal vaginal ultrasound (again with the dildo ultrasound) or an MRI. Adenomyosis is not the same as Endometritis, but 40% of those who suffer severe Endo will have the condition.

Treatment options vary, with non-invasive procedures such as hormone tablets and the Mirena coil to help reduce pain and bleeding. Or a treatment called uterine artery embolism which works by cutting off the blood supply to the adenomyosis. It’s less invasive than a hysterectomy but isn’t long-term and the pain may return in a couple of years.

After I took a day to decompress, all the dots began to join together, and the overwhelming feeling of understanding began. All of those things I had brushed off, never being able to find a cause for my pelvic floor dysfunction, the internal cramping that felt like my insides were falling out, it all clicked, and the cycle was complete. This is by no means the end of my journey of discovering the causes of my pelvic pain and which route to management I should take. I still have suspected Endometritis so there’s going to be another path to take in the near future.

This is really just the beginning and I was incredibly lucky to have learnt this news during Adenomyosis awareness month. There is little research into this condition and still no known cause, but the more we talk about it and share our stories and experiences, the more we bring this condition into the mainstream and challenge the period misconceptions. Painful periods are not necessarily normal, your pain IS REAL, and I believe you. Together we can change the conversation and empower one another to love ourselves and our bodies and not hate or judge it because of the things it cannot do.

I’m Sarah Rose, I have Pelvic Floor Dysfunction & Adenomyosis & I’m beginning to learn that my body is one hell of a badass!

 

 

15 comments

  • I had my 3 children young and had years of heavy periods with no regularity; pain I thought was normal until I had an endometrial ablation. I think this then went on to mask it all as I no longer had periods, but I did end up getting monthly cycles of intense pain where I couldn’t stand straight, I was white in the face and barely functioned.
    Not getting a monthly cycle made it hard to determine what it was. I ended up at a Gyno who moved pretty quickly to a hysterectomy that confirmed both endometriosis and adenomyosis. Halleluyah! I had two fantastic years of no pain UNTIL I got the monthly pain cycle back again. The gyno was convinced it wasn’t endometriosis and went on to take out my right ovary as that was where the pain was coming from. Unfortunately that was the start of the worst time of my life (still going and will be ongoing). In his ‘actions’ whilst taking the ovary out, he damaged a nerve in my abdomen. Nearly three years on, I have undergone seven medical procedures that required hospital admissions and also included getting a nerve stimulator implant. I have 24/7 pain, I can not work and I also take a truck load of medications including controlled drugs that aren’t on the PBS (upwards of $300 per month in out of pocket costs).
    Ladies – please, if you believe you have endometriosis and/or adenomyosis, and you are having to have surgery, make sure you are going to someone that has loads of experience with endo excision, don’t accept anything less than the best in their fields.
    If I can stop anyone going to the gyno/surgeon I went to and ending up like me, then it will at least make some of this pain worth it.

    Karen
  • Thanks for sharing your story Sarah Rose.
    The more often we share and bring these stories out into the open the more we can get visibility on these issues.
    It is not beneficial for women to have these stories kept private and quiet, it means we cannot have honest conversations about it and find out we are not alone. Oftentimes women are suffering in silence.
    The past couple of months and a month here and there last year had me suffering menorrhagia. It was horrific and it had me in tears when retelling the events to my sister, mother and doctor.
    I’m very much a solutions focused person so thinking I’d have to just put up with this with no outcome left me helpless and in tears, because I could see anxiety and an inability to do the things I wanted to do because I’d constantly need to go to the toilet. Either for something very real or a phantom feeling, either way it was temporarily debilitating.
    I have had an ultrasound (confirmed a 33mm fibroid) and I’ve been to the gyno, I’ve had the Mirena put in last week (after two weeks thinking about it and weighing up options and doing research) and am taking Cyclokapron for my heavy periods until the IUS settles and kicks in to do its thing.
    I guess we shall have to wait and see.

    Kay
  • Also had both issues after childbirth years. 3 weeks in the month sick, in pain with massive blood loss and clotting. Life was hard trying to work fulltime and pretend I was ok. A hysterectomy allowed me to live again…..so many male Drs thought I was exaggerating my experience each month. “You only lose a third of a cup during menstruation” I could lose that in 5 minutes and had to demand an appointment with a specialist. He quickly determined I was massively anaemic and had endo and adenomyosis. Thank goodness for trained people in their field. 10 years of hell was quickly reversed and decisions no longer determined by pain.

    Jenny
  • Also had both issues after childbirth years. 3 weeks in the month sick, in pain with massive blood loss and clotting. Life was hard trying to work fulltime and pretend I was ok. A hysterectomy allowed me to live again…..so many male Drs thought I was exaggerating my experience each month. “You only lose a third of a cup during menstruation” I could lose that in 5 minutes and had to demand an appointment with a specialist. He quickly determined I was massively anaemic and had endo and adenomyosis. Thank goodness for trained people in their field. 10 years of hell was quickly reversed and decisions no longer determined by pain.

    Jenny
  • I have been diagnosed with adenomyosis and put on a medication called Cyklokapron. It has helped a lot with the the heavy bleeding.

    Jenny

Leave a comment

Name .
.
Message .