what I should have posted ten months ago

I’ve been silent.

Not because I haven’t had things to say… more so because what I have to say is not easy to say. The below post was written ten months ago. Saved to my drafts, for my eyes only. Today I sit here, 7 months pregnant. I experienced a miscarriage in May 2015, a really hard summer of sadness and today, fear of what the next three months will hold. I wanted to share the below post, because while I am pregnant now and have thought a lot about motherhood, the below still rings true.

______________________________________________________________

When I was 19, and after a few rounds of tests and hormone medications, I was told by my doctor that I “would have a heck of a time getting pregnant”. Now being 19, I didn’t think too much of the diagnosis. I was 19, why would I?

However, years after hearing this I began to reflect and realize that I had two choices:

1. Ignore it OR
2. Accept it!

I chose to accept it, not because I lost hope in the idea of having children of my own or experiencing pregnancy, but because I really couldn’t ignore it any longer. After being diagnosed with endometriosis I gained new insight about my body and the researcher in me wanted to learn all there was to this new diagnosis, to be both informed and empowered.

Over ten years later, after two surgeries and many various trials with drugs and supplements, I am still unsure of whether or not I want to have children. This uncertainty of course has some relation to endometriosis; it affects every aspect of my menstrual cycle – my life – to not take it into account would be naive.

My life is not without children. I am an aunt to some pretty incredible kids. I’ve been blessed to take part in their upbringing, to laugh with them, enjoy their imaginations and to learn from them.

Living with endometriosis isn’t easy. Lately I’m pretty much convinced that it is quite awful. No one really asks what it’s like. Many people think “oh she just has bad cramps”, but it’s not like that at all. If only it were just a few cramps here and there. Living with endometriosis, knowing what the future holds, is devastating.

There is a line in the film, The Fault in Our Stars, where Hazel Grace tells Gus: “I also don’t really want this particular life.”. Without raising alarm bells for the fact that I may be sad to a certain level, and quite possibly depressed on some tough days, I often do not want this particular life (living with endometriosis). While Hazel Grace had a much tougher battle to go through, she makes a good point; sometimes life isn’t easy or joyful and it’s okay to not like what you are going through. It’s okay to be a little upset, frustrated and sad.

No one ever said life would be easy… I just wish it was easier.

While this disease may be destroying my insides, it doesn’t need to destroy my mind, mood or spiritual life. This of course is easier said than done. I’ve questioned a lot over the past few years. Sometimes I even wake up panicked that I may in fact never experience pregnancy, have not yet experienced pregnancy, may not want to experience pregnancy… and the list goes on and on and on. I struggle with seeing beyond the disease because it plays a role in so many facets of my life. From the number of hours of sleep I get, to my diet and exercise, whether or not I can lift my adorable nephew… it’s ever present.

And I doubt.

That is the worse part of all.

 

round two

uterus image

Thanks to my wonderful sister-in-law for making me this beautiful design.

A few months ago I underwent a second laparscopic surgery in an attempt to stabilize the endometriosis. It’s been a tough few months of pain, nausea, slow walks and disposables.

Side Note: The doctor advised against using tampons or a menstrual cup for the first few weeks. I had to resort to disposable pads as the cloth ones weren’t cutting it. My trip to the feminine hygiene aisle was overwhelming. The pads I once used were redesigned and repackaged. I felt like a 13-year-old who first got her period and didn’t know what to buy. I bought the wrong absorbency twice, was incredibly uncomfortable and felt extremely guilty about the amount of waste I created over the last few months.

Thankfully since then my DivaCup and I have been reunited.

While I had already been through the surgery once before, knowing what would happen didn’t make things any easier. And this time around, they took care of a fair bit of growth. The recovery was a long process and continues still today.

The staff at the hospital was however incredible, going above and beyond to make sure I was stable before sending me home. Also, unlike the first time around, the surgeon actually came out and spoke to me post-surgery. I went home knowing exactly what was done, what my recovery time would be like. Without going into too much detail, the growth was substantial (Stage 4 Bilateral Endometriosis), but the doctor is hopeful that I will have 6-12 months of better periods (my last three cycles have been terrible, I’m hopeful things will improve).

Overall the surgery was a good experience. There are however a few things I wish I would have been told before.

(1) The first few periods after your surgery will result in worse pain than the surgery itself (at least for me it did).

(2) Take at least two full weeks off from work to recover.

(3) You will feel better. Having the surgery near the end of the year was good with regards to work, but really disappointing for my personal life. I missed out on many nights out, Christmas with my family and a number of unpaid work hours. At the end of the day you need to take care of yourself, even if it means missing out on some social time with loved ones.

(4) Have a support system in place. Whether it’s your spouse, a sibling, parent or good friend, you will want to see people (even if you feel horrible). I am blessed with a loving family who visited often (thanks mom), friends who spent the day with me when my husband went back to work and who brought great books, meals and plants to fill my home with colour and life.

I may still be in pain, but I made it through what is hopefully the worst of things.

2014 in review

In the last few years since starting this blog, there has been a significant increase of menstrual-related content online and some of it has excitedly gone viral! As we draw a close to 2014, I wanted to highlight some of my favourites. While I can’t capture all of them in one post, I think most, if not all of these, will make for some interesting dinner conversations.

Reproduction in the Workplace
From advocating for paid menstrual leave to companies like Facebook and Apple offering to pay for women to freeze their eggs, it seems as though women are being given all sorts of “options”. Ideally a woman could “freeze” her job position and return back to exactly where she left off, but I guess family planning doesn’t play a role in company budget plans.

Pelvic Floor Muscles, Periods and Gaming
Whether you are jumping over obstacles with the pelvic floor exercise game, SKEA or attempting to break down the taboo around menstruation with the App, Tampon Run, gaming certainly introduced a new genre into the marketplace.

Policies and Periods
The resurgence of the Robin Danielson act, spurred a fair bit of debate around the oh so popular feminine hygiene aisle. The Act asks the FDA to mandate that tampon and pad manufacturers disclose all the ingredients found within their products on the outside of the box.  There was even a video made to encourage a change by Women’s Voices for the Earth titled: Always Detox the Box.

Menstrual Hygiene Day
May 28th, 2014 marked the first ever Menstrual Hygiene Day. Close to 100 organizations from around the world joined together to draw awareness to the global challenges surrounding menstrual hygiene. Be sure to join in for 2015!

Camp Gyno matures, sort of…
After a hilarious video by Hello Flo in 2013, the follow up was quite the masterpiece. The same adorable character fakes getting her period, only to have her mom throw her an over the top first moon party!

Subscribers Wanted!
And speaking of Hello Flo, period subscription services seem to be generating more buzz than Netflix! From your regular product needs to monthly snack boxes, these services seem to be meeting a need women didn’t even know they had. Of course, for those of us who use reusable options, the subscription features may not be as appealing.

Reusables on Primetime
In the fall of 2014, viewers in both Canada and the United States saw the premiere of The DivaCup commercial. If people didn’t know what a menstrual cup was, they sure do now!

Endo Goes Public
The launch of the ROSE Study by the Feinstein Institute for Medical Research in New York is bringing some much-needed hope to the 1 in 10 women who suffer from the disease . If you or someone you know has endometriosis, this study is for them!

Cups Collapse
I first saw the Lily Cup Compact at a gynecological conference last Spring and since then the cup has literally gone viral. The frenzy of media attention surrounding Lily Cup can mostly be attributed to their campaign on Kickstarter which acted very much as a store front (allowing backers to essentially pledge money in exchange for a Lily Cup). Kim at Dirty Diaper Laundry did a great review of Lily Cup (pros and cons) that I’d recommend checking out!

On conception…

The following post I drafted up in August 2014. Three months later, while I think the same, I think I am finally ready to share it with my readers.

– – – – – 

pregnant bellyI’ve been struggling with whether or not I should publish a post about faith here on Dropsofscarlet. Dropsofscarlet is a blog mostly about periods and women’s health and some would say faith has no part to play in these subject areas.

More and more I am seeing just how closely linked the two are in my personal life. Because of my challenges with reproductive health I have had a very hard time connecting with God. For me this is a big deal because my faith has always been the one thing I can count on.

I know that the way I am feeling is a direct result of me distancing myself from God, which is a direct result of the persistent pain I experience due to endometriosis. It’s hard to stay optimistic, when each day is plagued with cramping and nausea. I have some good days – they are rare, but good. It is equally hard to connect with God, who essentially created and designed the very thing that is destroying my insides: menstruation.

Through my experience growing up in the Christian faith, reading the Bible or listening to pastors speak about gender roles, procreation and marriage, I’ve heard it said, more often than not, that God made women so that they could essential produce babies. Of course most pastors today do acknowledge that women have many other roles outside of child bearing, but the weight of the responsibility on all things reproduction still very much centre on women. Our bodies are designed this way and were made for pregnancy; and that is a beautiful thing.

But, what happens when that “design” is flawed and can’t carry out that function? In my experience the church is pretty silent on issues of infertility and the menstrual cycle. While vocal on matters related to abortion and teen pregnancy, there isn’t much said to those women who are struggling every month to conceive or those struggling with reproductive diseases. Even outside of the church discussion of menstruation, miscarriage, infertility etc. are limited. They are uncomfortable subjects for many, but they are uncomfortable because sometimes there isn’t a solution to the problems we face.

Full disclosure: I am terrified of trying to conceive, because I fear failing to conceive. I know a lot of woman have that fear, but for someone who has been told since they were 19 that they will have a hard time getting pregnant, getting pregnant doesn’t make the top of one’s to do list.

It’s always been easier for me to think of life without kids, without the option of pregnancy. Why would I willingly set myself up for defeat. I know my body, I know it’s limitations and pregnancy (from a medical, logical standpoint) doesn’t make sense to pursue.

But, then again, I have been learning that there IS more than one way to have a family. There is more to being a woman, than being a mother. And if a woman wants to a mother, there are options.

 

on traveling with your period…

art-womantravel-420x0

This is not at all what I look like when traveling… picture me in my moccasins, tights and a loose sweater.

Back in February I had the opportunity to travel to Florida for business and then in March, both Texas and California. Being from Canada, a trip to anywhere warm and without snow is just lovely. The weather was warm, a light breeze graced us every so often and we seemed to always miss the brief showers. And yet, even in all this wonderfulness, it seemed like something was missing… oh yes, my period.

Since getting my period, it has seemed to always come when I travel, especially when it’s not due to come. I’ve had my period for the tail end of my honeymoon, camping, sailing, on a missions trip to the Dominican Republic, music festivals, on most of my business trips and of course, all experiences come with their fair share of nausea, pain and discomfort. Given the fact that most women get their period once a month, it is bound to fall on some sort of event (mine is notorious for this).

Over the years, and more recently, I have learned to pack my suitcase with items specific to the care of my period. Everything from my bra choice to my shoes is catered for period comfort. And because I’m a big advocate of knowledge share, I thought to offer some of my travel tips to help any fellow travelers!

1. First things first, never leave home without The DivaCup!

I know I talk way to much about my love for menstrual cups, but they really are the best thing for you and your suitcase space! If you aren’t due to get your period, but need something for cervical fluid, I recommend reusable cloth pantyliners made by Lunapads. They are so soft, it’s like sitting on a cloud.

2. Pack tea for nausea and cramping

Most hotel rooms have coffee makers and a nice cup of peppermint, ginger or raspberry leaf tea can make a world of difference. I’m a big fan of teas made by Traditional Medicinals.

3. Invest in a good electric heating pad or hot water bottle

Whether staying at a hotel or out camping, heat can help do away with cramps or at least help you settle.

4. Comfy pants

As someone who attends trade shows, I can’t exactly show up in my yoga pants, but I can change into something loose on my pelvic area after the show. These are especially helpful for plane rides. I usually keep an extra pair in my carry on in case I need to change before the flight, which is the case every time I fly. Dresses and skirts that don’t have tight or high waistlines are a also great choice!

5. Kettle chips!

Women who are pregnant and struggle with morning sickness or constant nausea have found great relief in eating potato chips. I myself also find these to make my nausea subside and quickly! A handful of these should help relax the stomach.

6. Nausea relief

For nausea brought on by travel, I usually pack the homeopathic remedy, cocculus indicus and for all other sorts of nausea I pack Ipecac. These two remedies have done wonders for me and I are a great relief. I’d recommend first talking to a health care provider before taking anything of this nature to ensure you are taking the right dosage for your symptoms.

7. Extra underwear!

Having a nice, hot shower after a long day at the conference is nicely complemented by a fresh pair!

8. Breast petals.

For those of us who experience breast tenderness prior to and/or during our period, a comfortable bra can go a long way. My breasts usually go up a cup size when I have my period, and so I often cannot fit into my bras nor do I find them to be very comfortable. Packing shirts with in seam cups or loose-fitting tops, that let you get away with a non wire bra or breast petals are a great comfort. You can find a good pair of reusable silicone petals at any department store.

9. Workout Gear

While I may not be able to get in a good workout on the first day of my period, it’s important to have the option when traveling. Given the amount of standing I do, a good workout 2-3 times a week is important. I would recommend picking up a copy of the 28 Lighter Diet as it provides exercise and diet tips for each phase of your cycle.

10. Reusable Water Bottle

Hydration is key for feeling good, no matter how what cycle day you are experiencing. By packing a reusable bottle, you can ensure you will have access to water at all times, helping you feel better, no matter your symptoms.

clinic visits

March is Endometriosis Awareness Month and this year, it feels different. It feels different because last year my diagnosis was new. I was still reading up on everything there was to learn about the disease; hopeful that in time things would get better.

But, since then I have been met with much disappointment and discouragement.

A few weeks ago my referral to a reproductive endocrinologist finally came through and thus began days upon days of blood tests and pelvic ultrasounds at a fertility clinic.

My first trip to the clinic was not like other doctor visits. Walking in you can’t help but feel welcome. You see the Keurig machine, comfortable couches and flat screen televisions and just think, “Am I in the right place?”.

Gyne TableRest assured, as soon as they call you back, the setting quickly changes from one of a living room to the standard clinic examine tables, white coats and medical equipment you hope they will not be inserting you know where only to find out, yes in fact they are going to insert that you know where.

For those not really sure of what goes on in such clinics, your menstrual cycle is basically monitored from day 1 through to the start of your next cycle. They check for irregularities, that you’ve ovulated, any abnormal growths and in my case, the thickness of the endometrium.

Unlike many of the women frequenting the clinic alongside me, I am not going there for assistance with getting pregnant; I’m there because I need relief from the day-to-day symptoms that are making my life very difficult. After once again being instructed to try to get pregnant, and fast, I honestly told the doctor that I can’t envision a life with children, if my life will be as it is today – filled with pain, nausea, diet restrictions, fatigue etc. How can I take care of a new life, when I struggle to take care of my own?

To my surprise, he agreed.

The thing is, as soon as a fertility clinic hears that you don’t want to get pregnant, they treat you differently – as if you are less of a woman and a waste of their time. My referral wasn’t for the fertility services, but more so the expertise that I could gain from seeing the endocrinologist on staff.

When the tests first started I was excited. The idea of new knowledge and support was appealing. I let myself become vulnerable to the medical system, lying back in anticipation that the awkward (and sometimes painful) examinations would lead to something better. Yet, visit after visit the hope I began to allow myself to feel again, quickly started to fade. Like all the others, this doctor really only knows to prescribe two things to assist with endometriosis: pregnancy or birth control.

What else is there if you can’t tolerate birth control and pregnancy is not what you want this day in your life? To my doctor’s knowledge, there is nothing else that is medically proven to suppress ovulation and aid in the pain.

The Hormone Health Network defines endocrinologists as follows:

Endocrinologists are trained to diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in your system.

Given my experience over the past number of years, I feel like they should add, “… helping to restore the normal balance of hormones in your system through fake, synthetic and unnatural hormones… and if you’re lucky some pretty risk laden chemicals. Most endocrinologists get over ten years of training which includes four years of medical school and then additional years in residency or an internship program. Pretty impressive… or is it?

MirenaEven with all that schooling, these doctors have a very narrow viewpoint. I’m beginning to realize that no matter how much unusual growth they find, at the end of the day, they really aren’t there to help you overcome endometriosis, they are there to simply manage the symptoms through their trusty aid: Bayer Pharmaceuticals (or insert pharmaceutical giant of your choice) .

The doctor had asked me to think outside the box in my initial visit – to try to think beyond the endometriosis and to be open to new ideas. Imagine my frustration when he fails to do the same, visit after visit. I will finish this round of testing, hear the final verdict and will most likely have to take my results to get a second opinion.

I’ll still go every three days to get poked and prodded until this month’s period arrives. I’ll go because maybe, just maybe something will show up that will make the doctor take a second look.

To all those living with endometriosis, my love goes out to you.

risky business

I recently came across an article that both surprised and angered me. diane 3The headline read as follows: Diane-35: Family whose daughter died after taking drug sues Shoppers Drug Mart. The family claims that although Diane-35 is in question by Health Canada, Shoppers gave the medication to their 18-year-old daughter without providing accurate information about when to stop the drug and are therefore at fault. The article does not mention the role of the family physician, the one responsible for initial consultation, as well as repeat prescription fills.

Diane-35 works to regulate the hormones that affect the skin, thus helping women who suffer from hormonal acne. The reality of cases like this is that they aren’t rare. There have been over ten reported cases in Canada alone of death caused by Diane-35.

The fact that a young woman died from taking mediation prescribed to her by a trusted health care professional is tragic. What’s even more startling is that doctor’s continue to prescribe medication, even though there are reported cases with potentially fatal side effects.

Most every oral contraceptive currently on the market has had a legal case in which a woman’s health was compromised or death occurred. Side effects on such medications can include (and are not limited to), blood clots, nausea, migraines, breast tenderness, breakthrough bleeding, decreased libido, mood swings etc.

With any death or adverse health complication related to prescription drugs, there are many players involved. In the case of Diane-35, the blame shouldn’t fall solely on a drugstore. Within Canada, there is Health Canada (the governing body who approves such drugs), the manufacturer of the drug, AKA Big Pharma, the doctor prescribing the medication, the pharmacist, the patient and/or the patient’s parent or guardian.

While we may not want to admit it, most women go on hormone altering medications without really knowing the side effects and few have an understanding of how the drug affects their menstrual cycle.

With this in mind the question needs to be asked: Are we (the “patient”) partly responsible when we experience a side effect from any medication we willingly consume?

Yes, our doctor prescribed it, and yes, the pharmacist dispensed it, but at the end of the day, we take it.

Although reading through the long list of side effects of a new medication can create fear and unease, it is there for the taking and rightly so. While chance of something awful occurring as a result of taking a “pill” is slim, it happens and when it does, we want to point the finger at everyone else, but ourselves.

Having had my fair share of unpleasant side effects to medication, oral contraceptives included, I knew going into it, that there were risks. While not all women will go home and research the new prescription their doctor has prescribed for them, the option is there and because of this, we too need to be held accountable. If side effects occur, understanding their link to the medication we are on can better help us seek medical attention rather than brushing it off as something else.

The death caused by Diane-35 is definitely a tragedy and one that should not be taken lightly. But, what really needs to be re-examined in this case is not whether Shoppers Drug Mart is to blame, but why the drug was being made available to dispense at all?

The case against Diane-35 mimics that of like cases involving Yaz and Yasmine. The risk is ever present, but doctors continue to prescribe these medications because the risk-benefit ratio is not really that great of a… risk. And Big Pharma continues to manufacture such drugs, even after side effects are discovered.

Who is accountable, and what measures are being put in place to ensure accountability?

Education about hormonal medications needs to be more available to young women. How many high school health curriculums explore the side effects and concerns of birth control or hormone altering medications like Diane-35? While oral contraceptives play an important role in family planning initiatives, they need to be better presented to all audiences, whether that be students, parents, a patient etc.

Yes, drugstores need to make literature available, but by that point it should be the second or third opportunity to receive such information. Initial consultation needs to happen with the doctor prescribing the medication. Parents too need to play a more active role in advocating for their children, no matter their age. This starts with understanding why they are taking a certain medication and the side effects which could occur.

Sometimes the benefits do outweigh the risks, but it seems that this is only the case when the we avoid the risks ourselves.