What are you Carrying Around?

A blog about my fertility challenge; a must read for all women.

A year ago, I had a chat with my doctor. I was still nursing my one-and-a-half-year-old and had yet to get my period. Since we wanted to start trying in the summer, I decided to stop nursing so my period would finally start back up.

I did and nada. I really thought something was happening because I was tracking my ovulation and noticed cramps two weeks later. Same thing the following month, and the next. So, my doctor did some blood work to look at my hormones. We did a few ultrasounds, things looked normal. We tried a round of progesterone to kick start things. Another ultrasound which showed there was a lining building. ‘Oh, that’s great,’ my doctor said, ‘the progesterone must have kick started things, I think you’ll get your period this month’. Anddddd nothing. Just more cramping, and damn, it was getting worse.

I saw my acupuncturist and naturopath for added support on this mission to get my body back in balance. Each month I would track my ovulation with those pee sticks. We would try to conceive, and I would try to stay hopeful. Nine months into uncovering this mystery, I met with a fertility doctor. After 5 minutes of listening to my story and my symptoms, he said ‘I think you have Asherman’s syndrome’. Oh, there was a name for this. Not sure I liked the sound of that.

He explained that he strongly suspected that the dilation and culettage (aka D&C) I had at 3 weeks postpartum for retained placenta may have caused severe scar tissue. A saline infusion sonohysterography (SIS) confirmed this; my uterus opening was essentially sealed shut with scar tissue. The extremely painful cramps I was experiencing during my ‘period’ was in fact that. My body was building a lining, and it had nowhere to go.

All of a sudden, I was part of a club I didn’t want to be in. I had gotten pregnant with Georgia so easily, so I never even entertained that the second time around could come with challenges. The first few weeks of my postpartum journey had been traumatic enough. From hemorrhaging, to an ambulance ride, to ER visits, to multiple ultrasounds, to a D&C, those first few weeks postpartum had been so hard. And now, over 2 years later, I was still dealing with complications?! I couldn’t help but feel angry and devastated and like a tidal wave had just knocked me over.

These past few months were very, very hard. I have felt like I have zero control over things, and worse, that I have been at the mercy of the health system. Delay after delay, referrals, waiting, wait lists, following up and finally everything aligned. I felt like I needed to play a bigger part in my health care, so I figured out how I could do that. I did some research on the most versed OB/GYN in Ottawa for Asherman’s syndrome, who is an expert surgeon. From our first conversation to the surgery was a matter of weeks.

I am now 3 weeks out from the surgery. The OB-GYN and his team carefully removed the scar tissue and fibroid wreaking havoc in my uterus. I’ve since had my first period in over 3 years. I am now on estrogen and progesterone (fun!) and am meeting with the fertility doctor next week to talk about when we can start trying.

So why am I sharing my story?

Well, here is the interesting part. It’s not actually that rare. And it’s not always diagnosed. Research shows that 20% of women who have had a D&C after pregnancy complications may have Asherman’s syndrome. It can also be caused by scar tissue after a C section, from sutures used to stop hemorrhages or endometriosis.

So please take away a few things from my experience. If you end up needing a D&C for pregnancy complications, request a saline ultrasound to make sure it’s healed properly. I am shocked that this is not the norm. I am also surprised that there isn’t more of an education piece about the risk of Asherman’s syndrome and what to watch out for.

So, what are the symptoms of Asherman’s?

  • Having very light periods (hypomenorrhea)
  • Having no periods (amenorrhea) *This was me*
  • Having severe cramping or pain *This was me*
  • Being unable to get or stay pregnant

Some women have no symptoms, and some women have normal periods.

If you are currently struggling to conceive, or having very light periods or none at all postpartum and had a D&C after pregnancy, ask for a referral to an OB-GYN. A SIS ultrasound will help identify scar tissue. A transvaginal and regular ultrasound will probably not, hence the more drawn out diagnosis in my case.

I was recently telling someone about going in for this surgery. The next day that person called me and shared that she too had experienced this. She shared that she had never heard anyone else speak of this. That she didn’t know this had a name. That she had been so traumatized by the initial experience postpartum that she didn’t have the surgery to repair the lining. That she had accepted that it meant she would have one wonderful kiddo, and no more. That she had never wanted to google it. That she had never spoken to a specialist. That she had tried not to think about it in 9 years. 9 years ladies. I feel for her quiet solitary suffering. I am bothered that it was such an unpleasant experience for her to navigate and that the resources and education just weren’t there. I am happy to say she is now getting the referral to the very OB-GYN who performed my surgery.

So I leave you with a few tips on how to best support someone going through a fertility hurdle:

Please don’t use the word infertility. Instead use ‘fertility challenge/hurdle/struggle’.

Please don’t say ‘well atleast you have one child’. While this is well intentioned, just because someone has a child or two, doesn’t take away their yearning for another child. If you want 2 kids or 3 kids or 4, you deserve exactly that.

Please don’t complain about your pregnancy. We totally get it, pregnancy comes with a host of fun side effects, but try your best to complain to anyone but them. It’s hard to hear.

Please listen and ask questions. Check in often.

Please focus on hope. After a particularly hard day, my friend sent flowers with the most beautiful note. This single quote is such an incredible message, so I thought I would share it:

If you only carry one thing throughout your entire life, let it be hope. Let it be hope that better things are always ahead. Let it be hope that you can get through even the toughest of times. Let it be hope that you are stronger than any challenge that comes your way. Let it be hope that you are exactly where you are meant to be right now, and that you’re on the path to where you’re meant to be…because during these times, hope will be the very thing that carries you through.

                                                                                                            -Nikki Banas

While I wouldn’t have chosen this experience, this experience chose me. And quite frankly, what the fuck is the point in dwelling on some of the unfortunate occurrences that led to this? I now feel like I have been cleared of the crap that was no longer serving me to make space for the new. I hope that my story sheds some light on this syndrome, that it encourages you to be your own health advocate, and that it reinforces that there is always a reason to carry hope.

                                                                                          -Kristen

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