IT’S POSSIBLE TO HAVE IT ALL: A LIFE, CAREER & ENDOMETRIOSIS

 

Sherika Wynter, Voices Of Endo

 

Being a woman in corporate America is far from easy. Endometriosis does not help. Generally, I’ve chosen to be rather quiet about my endometriosis at the workplace. It’s not because I am ashamed but I do not need or want any other strikes against me. As I become more comfortable at a workplace, I may decide to share some of my experiences with other female coworkers if the opportunity arises. Women always seem to bond over “Aunt Flow”. If you choose this route, be ready for a positive and negative reaction. In my experience, I’ve had women be very sympathetic and show interest in learning more for their own benefit as well as their loved ones. I’ve also experienced the opposite and I’m told, “You are just looking for attention. It can’t be THAT bad.” In either situations, do not ingest those emotions. You have enough to deal with. Unless individuals show a vested interest in your condition, I would advise you not to look for a support system in the workplace.

 

I’ve never wanted endometriosis to have an impact on my daily activities. In the past, I would always try to push through the pain. But now, I’m now starting to accept I am not superwoman, even though I want to be. I’ll never forget, about 7 years ago, I went to work knowing that I was not feeling well. I wanted to push through because I was tired of being and being treated like I was sick. I was able to get through the first few hours and then things quickly went south. All of a sudden it felt like I urinated on myself. I looked down and blood was leaking out of my pants. I was newly diagnosed so I didn’t have an “exit strategy” in place. All I could do was grab my things and head home.

 

Since then, I haven’t pushed my body to its limit. My comfort level at that job was never the same. It just felt like everyone looked at me differently. That being said, when I feel pain higher than a 7 (on a 1-10 scale), I will immediately attempt to remove myself from my workplace. I do this because I’m not sure of the level of intensity that’s coming and the excruciating pain can be an extremely emotional experience. It’s also important to remember, you don’t need to explain yourself to anyone.

 

If you are aware of a procedure on the horizon, please notify human resources (HR). This way, if you need more time off and/or need to work from home, they will be able to discuss it internally with management. For example, when I went through egg freezing, HR made provisions during my treatment. I didn’t go straight to my management team, instead I spoke with HR to advise me on next steps. By law, they are your advocate. Use them. Also, establish your “exit strategy”. For me, I carry anti-inflammatory medications, menstrual pads and panty liners at all times. When I feel an onset of pain, I immediately go to the restroom and triage the situation. If after an hour, I’m unable to control the pain, I begin to clear my schedule so I can make it home safely. I may return to work later in the day, but I can never make any promises. If there is an immediate leave of absence, the next day I’ll inform HR about it. It’s hard enough to go through an episode, so it's easier and safer for me to tell my job about it afterwards.  


At the end of the day, it is possible to work, have endometriosis and be successful. It all revolves around proactivity, accepting your condition and listening to your body when it says, “I’ve had enough”. 

Battling Endometriosis; A Decade Later

 

Sherika Wynter, Voices Of Endo

 

I have a very different outlook on life in my 30s after battling endometriosis for the last 10 years. I often find myself reminiscing on some of the promises I made in my early 20s: upper management by 30, married with child by 30, own a house by 30... All things society placed on me as necessities.

 

But here is my reality, I had my 4th laparoscopy a month after my 30th birthday. It was my longest, most draining and complicated surgery to date. It was also where they discovered my left ovary appeared to be non-operational. I was devastated and cried from the depths of my soul. I was left wondering..What did I do wrong? Where do I go from here? Is this the beginning of infertility?

 

All my questions no one had answers to. But as my reproductive endocrinologist said, "We don’t give up. We fight this. You will be fine." For the last 8 years, he's never been wrong, so there  was no need to start doubting him now. I knew I needed to take my faith to the next level, believing, “What is for me, is for me.”

 

Putting Myself First

As I rounded the corner of 30, I began to place my personal life first because, at work, I am dispensable. In life, however, I only have one shot. I have to make it count. With that I mind, I started to prioritize my visits to my  reproductive endocrinologist . During these visits, we would check my AMH (anti-mullerian hormone) levels, my ovaries and ensure my uterus is fluid free. Yes, I've frozen my eggs but I wanted to ensure that my body is still in a position to carry when the time is right. (Notice I said "when" not "if" --- I believe my time is coming.) I’m also more cognizant of my food intake. As my dad would say, “You are no longer a spring chicken, Sherika!” I’m preparing my body for the long run as I’m ready to put up one hell of a fight.

 

Key Benefits for Work

Many don’t realize the impact endometriosis has on your career and it took time to learn what I needed from a company to balance both sides. Company benefits are more important now that I am diagnosed. When I interview for jobs, I make sure they have an option to work remotely. This way, if I'm not feeling well on a particular day, I can take the time I need to heal. I can go to my doctor appointments without feeling guilty or needing to take the entire day off just for an hour appointment. I also ensure their insurance is accepted by my physicians. It sounds extreme but it is very difficult to switch doctors with endometriosis. Our condition is complicated and coverage may be denied. For example, I’m currently paying for my last surgery because it wasn’t a covered procedure. I was able to negotiate a $52K procedure to an affordable amount but I was taught a valuable lesson. You have a right to inquire about these details in order to be proactive about your health.

 

2 for 1 Deal

Lastly, I've finally accepted that my endometriosis is a 2 for 1 deal, you get me, you get it. We are a perfect package for the right life partner and the right set of friends. For years, I’ve wondered if it was a hindrance, the reason why past relationships failed and the source of my singleness. I would beat myself up about it. Now, I realized it's just another piece of the puzzle that makes me unique. Granted, every so often I find myself going down that self-guilt road but I remind myself, "There isn't a more beautiful picture of you available. Shine with what you have."

INTERNATIONAL WOMEN'S DAY

 

Whether its women who want to have children or women who want to help others have children, we aim to create access for all who may need to utilize family building options. This is why on International Women’s Day, we want to remind everyone to #BeBoldForChange when it comes to reproductive health.

 

One of Progyny’s regular messages is to be proactive when it comes to fertility. This entails seeing your doctor, getting the necessary blood work, an ultrasound (if needed) and speaking with a reproductive endocrinologist about your family history. It’s also about providing support and a shoulder to lean on when it’s needed. 

 

In the spirit of International Women’s Day, as women gain more social, economic, cultural and political equality, we also need to be mindful that global support is needed to accelerate gender parity. The more you educate yourself about your health, the more you can become an advocate and lend your voice when it comes to the reproductive rights of those both near and far.

ENDOMETRIOSIS: KNOWING YOUR SYMPOTOMS AND BEING YOUR BEST ADVOCATE

 

Trish McMarrow, Clinical Nurse Educator

 

March is Endometriosis Awareness Month. Endometriosis is when the tissue that lines the uterus (the endometrium) grows outside of the uterus, usually in the abdomen on the ovaries and fallopian tubes. This can have a devastating effect on a woman’s quality of life due to its painful symptoms. It is also one of the biggest causes of infertility in women. Adding to the problem is, symptoms are often missed or misdiagnosed completely. This is why raising awareness around what to look for and questions to ask your doctor can be vital in making sure you’re taking care of your fertility health.

 

The classic symptoms of endometriosis are abdominal pain, heavy periods and menstrual cramps. However, not everyone will experience the classic symptoms which is why it’s important to know the uncommon symptoms which include fatigue, diarrhea, constipation, pain with urination, bloating and/or nausea, especially during menstrual periods. In general, pain is the most common complaint. At home efforts, such as a heating pad or non-steroidal anti-inflammatory drugs (NSAIDs) that you can get over the counter (ibuprofen, Motrin, Naproxen, Aleve) can be a comfort. However, the best way to manage the pain is with the help from a physician. Hormonal treatment with oral contraceptives can offer some relief and more aggressive measures, such as surgically removing adhesions, might be necessary.

 

It’s important to be aware that endometriosis is sometimes mistaken for other conditions such as pelvic inflammatory disease (PID) or ovarian cysts. It may also be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhea, constipation and abdominal cramping. IBS can accompany endometriosis, which further complicates the diagnosis.

 

Another factor to consider is the severity of your pain isn't necessarily a reliable indicator of the extent of the condition. Some women with mild endometriosis have intense pain, while others with advanced endometriosis may have little pain or even no pain at all.

 

If you have even the slightest concern that endometriosis may be an issue for you, be proactive and speak to your doctor. I’d suggest creating a list and writing down any and all of symptoms that that are worrisome. Inform your OB/GYN what you’re experiencing. Track a few months of your period as well as the symptoms you’re having on which days and be specific!

 

Don't ignore what your body is telling you. If you feel that something is off, then you are likely right. Find a doctor you trust and can have an open and honest conversation with. Come prepared. Demand to get answers. In the end, stay positive and be your own advocate. It may take some knowledge, persistence, trial and error, but you will get to a comfortable place.

THERE'S NO SUCH THING AS “NORMAL” WHEN FACING ENDOMETRIOSIS

 

Sherika Wynter, Voices Of Endo

 

October 14, 2008.
You never forget your diagnosis date. It’s one of the most bittersweet days of your life. You finally get to let go a sigh of relief but you struggle with your next breath at the same time. You're faced with difficult decisions and very little guidance. What you thought was the end of a long journey is just the beginning of an even longer and lonely expedition. You are never ready, but you have to fight.

My cycle started off as "normal" - 5-7 days with little to no pain and 28 days to the calendar. I was 13. About a year or so into my womanhood journey, things went south. Every month, my pain increased, my flow decreased and my lack of knowledge... it stayed the same. You see, no one tells you what to expect from your menstrual cycle. Your “normal” is based on the women you're surrounded by, their knowledge and experience. It's a part of parenting that no one speaks to. It's the blind leading the blind.
 

The downward spiral
My ability to cope ceased around the age of 22, approximately 6 weeks prior to my emergency procedure. For first 8 years of my menstrual cycle, I knew I was out of commission for the first 24-48 hours of my cycle. Everyone in my family knew the routine. We had a system. Suddenly, that changed. I was experiencing daily pain, with no explanation. I visited the ER twice, within the first 2 weeks but was told I had everything from colitis to gas. Of course, I was unable to replicate the pain once at the hospital, making my story even more unbelievable. My parents believed me but that wasn't enough. For the next 4 weeks, I kept a pain journal, marking my body with a sharpie for every place that hurt. I was determined to figure out the source of my ailment while others thought I was going insane. My logic was: if I cannot reproduce the pain, I can at least track it.
 

Hail Mary
The morning of my diagnosis, I went to my OB-GYN. It was my Hail Mary. She was on call at the hospital and her colleague saw me. Her colleague did an ultrasound, concluded I had ovarian torsion and told me to meet my OB-GYN at the hospital immediately. Upon arrival, I was examined again and was told it was a misdiagnosis, that all my symptoms and problems were caused by endometriosis. I pleaded with her to look a little further as I was mentally, physically, and emotionally exhausted from all the pain. But she was certain and I had to figure out what all this meant.


The winner of this battle

From that day forward, I learned everything I could about endometriosis. I learned my trigger foods. I tried different medications. Some worked, others were an epic fail. I specifically focused on the havoc it could wreak on my reproductive system. I wanted to be an expert and an advocate for myself. I knew that if I didn't speak up for me, this disease would kill me. Not literally, but my spirit, my drive, my mental stability. My mother and I searched the internet for a reproductive endocrinologist who valued both: wellness and fertility. Finally, we struck gold.

Upon finding my physician, we discussed my future and how we could ensure I would get my heart's desire: a child. After finally getting my cycles under control, he urged me to freeze my eggs. Insert shock factor here. At 24, who wants to speak about the possibility of infertility? Is this real life? I didn't want to think about it. But if I was going to be proactive, I needed to adhere to counsel. I finally agreed. For my 27th birthday, I froze my eggs. It was the best decision I've made thus far along my endometriosis journey. I finally felt like I won a battle in this war.
 

Be vocal
There's no right or wrong way to cope with endometriosis. It really boils down to personal preference and priority. Over the last 8.5 years, I've had 4 laparoscopic surgeries and 1 cycle of egg freezing. For some, that's plenty; for others, it's a dream. One thing is sure: we all wish we knew sooner. For me, I wish OB-GYNs and parents were more proactive. I believe every girl who is menstrual should have basic knowledge on all reproductive issues. My mom had no idea what was right or wrong and for most OB-GYNs, "bad periods" are considered normal. They are not. There is nothing normal about it. The more the idea of "normal" is engrained, the harder it is to diagnose. I was told it was "in my head" by medical professionals and most of the women I've encountered that had similar experiences.

I also wish there were more prominent support avenues. It was hard for me to find the right group of women to support me through my acceptance phase. It takes years to accept an endometriosis diagnosis. Why? Because it’s constantly changing.. As a woman grows, her priorities change, her needs change, her body changes. The support I needed at 22 is very different than the support I need approaching 31. You often feel lost, resetting your support system each step along the way.


However, I urge you to start listening to your body and start asking questions. If you feel that something is wrong or isn’t “normal”, there’s a really good chance you’re right. It’s not “in your head” because you know your body best. Don’t be scared of speaking up, be scared of not knowing what could happen if you knew.  

 

 

GETTING TO KNOW YOUR PATIENT CARE ADVOCATE: LISSETTE

Lisette

 

What do you enjoy the most about being a Pateint Care Advocate?

 

I mostly enjoy having a role that allows me to provide personalized guidance, especially when briefing new members on how their benefits work and making sure they have a good understanding of it. Progyny provides the most generous fertility coverage in the United States right now and you can sense member’s excitement and relief, through the phone, when they hear that we do not limit them to a dollar amount in coverage. Whether it’s someone who's undergone multiple treatment cycle or new to fertility treatment, being part of their support system already makes the member’s experience unique and positive.

 

What’s your favorite/best moment so far at Progyny?

 

A great moment was when we were able to send a member to an in-network clinic that was closer to her home. As you know, we’re growing and that means our network of providers is also growing. When she first came to me, the closest clinic was over 100 miles away making it hard for her to receive treatment. I reached out to our provider relations team to see if they could help provide this member with a closer clinic and it turns out this was a project they were already working on! How neat is that? The provider relations team recognized the need for more clinics in this particular area and it became a win - win for everyone. It was incredibly rewarding to tell this particular member that we had a clinic in her area. She was so grateful and I was so happy that I was able to help her utilize her Progyny Benefit as soon as possible!

 

What does family mean to you?

 

I have a small family and I love them very much. But I’ve also come to realize that my closest friends are also part of family. Family are the people that have seen and supported me through rough patches in life but also during my most  joyous moments. Life wouldn’t be as meaningful without them! The best part is that my family keeps growing - at Progyny I already consider some colleagues to be part of my family and I enjoy being part of this team!

 

Give one word to describe the impact you’ve made on a patient’s life: Succor

 

What’s your favorite baby name?

 

Mila. It’s an adorable baby name! I’m also just a huge Mila Kunis fan!

 

Who’s your favorite celebrity baby?

 

My favorite celebrity baby would of course have to be Ashton Kutcher and Mila Kunis’ very own baby boy named Dmitri Portwood Kutcher!  I’ve always been a fan of That 70s show where they played a couple on it before they actually dated. Now I’m happy to see these two awesome actors building their own family!

 

What was the last gift you gave?

 

I gave my boyfriend a beautiful MVMT watch because It was something he had talked about for a while. It was an unexpected gift and he really liked it!

 

Where was the last place you traveled?

 

I went to Montreal, Canada last year. I was there for a music festival with friends and it was so much fun! The food was amazing and being in a very bilingual city was a unique experience for me. You could see the French and English influence throughout. The architecture was just beautiful!

 

What is your favorite movie?

 

My favorite movie is Shutter Island. I’m very into psychological thrillers and anything Leonardo Dicaprio.

 

Last TV series you binge watched?  

 

I am a huge Fan of The Magicians, a show on Syfy. I’m usually good at predicting what is going to happen on a T.V. show/movie, but this show has its many twists and turns. I enjoy the surprises!

WHAT BEYONCE’S FERTILITY CAN TEACH YOU ABOUT YOUR OWN

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Jay Palumbo, Member Engagement

 

Beyoncé’s recent pregnancy announcement is causing the internet to rejoice, but while thanking Queen B for giving us something in the news that’s positive, this is also a great opportunity to discuss fertility and age. Why? Because Beyoncé’s news should be urging women to think about family planning and what exactly that means.

 

In 2009, I began down the path of infertility treatments to build my family and through my research I was able to find a strong community of people just like me. Over the years, we’ve cheered each other on, supported one another and shared a deep appreciation for whenever a celebrity has “come out” to discuss their own fertility journey. Mostly because it helps bring awareness to our community.

 

Now you may be asking, “How does this relate to me?”

 

If we take a look back, Beyoncé’s first baby was born at 31 and now at 35, she’s pregnant with twins. Regardless if she went through fertility treatments or not, this should be a good reminder of our biological clock. When you’re over the age of 32 years old (which in the real world isn’t old but in fertility years, it’s beginning to get up there), your egg quality starts to decline.

 

According to Dr. Maria Bucur, clinical nurse educator at Progyny, a woman’s ability to conceive naturally each month declines as she gets older. At age 30, the ability to naturally conceive is 20% each month and at age 40 it drops to 5% each month.”

 

An additional factor to consider as you get older, there’s an increase a woman will suffer a miscarriage. Even Beyoncé was open about her miscarriage, which I know those who have endured similar losses really respected.

 

Another celebrity who caused some speculation was Janet Jackson when she announced she was pregnant at 50 years old. Those in our community wondered if she used her own eggs, donor eggs or again, given the statistics, if she was just one of the luckiest, most fertile 50 year old ever.

 

Whether they didn’t do treatment or had any assistance, it’s ultimately nobody’s business. People are genuinely happy for them able to have a family. The real point is when we see a celebrity who is “older” (again, I use that term loosely) who is expecting, my concern as an advocate is it sends out false hope that you can delay having children and have no problem conceiving.

 

I’m not saying everyone should have children in their early twenties nor am I saying that everyone will absolutely have to go through fertility treatment if they wait. It’s simply smart to gauge your fertility not by what you read in the news or what someone tells you in the gym locker room (i.e. “I had a sister who got pregnant when she was 40!”) but more by being proactive and getting the necessary tests.

 

If you’re a woman, this would entail a consultation with a reproductive endocrinologist where you’ll review your medical history, get a sonogram (to check your ovaries, uterus and fallopian tubes to see if there are any polyps, fibroids, cysts or blockage) and a blood test to check your hormones, specifically your Follicle-Stimulating Hormone (FSH) and Anti-Mullerian Hormone (AMH). This will give the doctor an overall idea of roughly the amount and quality of your eggs as well as your fertility health. If you’re a man, you would go to an urologist and get a semen analysis to check the health and viability of the sperm produced.

 

So while we are all excited about the two new members of the BeyHive, I hope those interested in having children will use this moment to consider their own fertility health. I know it’s not quite as exciting as watching Lemonade but it's equally empowering!

REPLACING HORMONE SHOTS WITH CUPID'S BOW

 

Jay Palumbo, Member Engagement

 

Valentine’s Day is upon us! If you’ve been trying to conceive or actively going through fertility treatment, there’s no doubt that the months upon months of contrived and controlled sex would affect your love life. When you first met your significant other, all you needed were two things: passion and privacy. It didn’t matter what day of the month it was, what position your cervix was in and lying down for an hour afterwards was by choice and not required. Although it may be easier said than done, it’s important to put fertility aside if only for one night and have some fun again. Here are some suggestions that might help!

 

TTC Free Night

No talking about sperm counts, ovulation prediction kits or anything perfunctory related to conceiving. It may also help to write down other topics you like to discuss that are in no way related to your uterus. It can be a hobby, a recent book you’ve read or a recent accomplishment at work. You are more than your reproductive organs so feel free to talk about the thousands of other topics that matter to you!

 

Netflix and Chill

If there’s any form of entertainment that helps get you in the mood, whether it be a romantic comedy, a romance novel, vampires, car repair (just throwing that out there), then make sure you have it on hand. Get lost in binge watching a show you both enjoy or a movie that transports you to another place and time.

 

Schedule Your Own “Sex Summit”

Plan a dinner where you sit down and tell each other what you like, don’t like, what you want to do more of and suggest at least one new thing to try. The summit alone can get you back in a fun, sexy mood.

 

Go Old School

First, borrow your parent’s car. Then, get a six pack, drive to a make out spot, hop in the back seat and get frisky. Who knows? You may get lucky in more ways than one.

 

Remember the Romance

Light some candles, get the music going, prepare a bubble bath and put on that sexy nightgown. Set the scene and enjoy all of it! How can one resist chocolates, rose petals and silk sheets? You’ve been stressed and serious enough so why not pull out all of the stops.

 

Book a Hotel Stay

Sometimes, when you’re out of your usual surroundings, you’re less distracted from household chores. No dishes to wash, garbage to take out or bed to make. So why not book a night away and treat yourself to the luxury of being removed from the house.

 

Forget the Rules

Every TTC couple has read a million anecdotes on what the best way to conceive. Sure enough those anecdotes have made their way into both our brains and bedroom. Let’s all give ourselves permission to just have sex for sanity’s sake! So before you have another “Baby Dance” while suspended from the ceiling in gravity boots listening to Barry Manilow's ‘Mandy’ because your best friend's cousin's hairdresser told you that she got pregnant once doing just that -- remember that sex is supposed to be fun!

 

The best gift you can give yourselves on Valentine’s Day is a night off from obsessing about conceiving and simply enjoy each other’s company. Whether you have children yet or not, you have each other and that’s something worth celebrating!

DON’T LET THIS STUDY FREEZE YOUR DECISION

 

Trish McMorrow, MSN, Clinical Educator at Progyny

 

Researchers in Australia sought out to answer the question, “What are the reproductive experiences of women who cryopreserve oocytes for non-medical reasons?” They surveyed nearly 100 women who underwent egg freezing at Melbourne IVF between 1999-2014. Of the 96 respondents to the survey nearly half said they had frozen their eggs in the past 2 years. While the study found that only 6% of the women had used their frozen eggs and only 3% had given birth using their frozen eggs, there are many limitations to this data.

 

A major limitation is, most of these women have recently frozen their eggs. Egg freezing has only recently gained traction and it doesn’t surprise me that of the 96 respondents from 1999 to 2014 nearly half had frozen in the past two years. I suspect that some of these women will plan to use these eggs in their future. This study can be used as an extra piece of information that a woman can use to help inform her decision, but I would take it with a grain of salt considering the limitations.

 

More Research Is Needed
More research is needed as the number of healthy women who freeze their eggs are proactively electing this procedure in order to avoid age-related infertility. If this study was conducted in a year or two, it would’ve had the potential to help women make more informed decisions. In the meantime, I always recommend for women to go for an initial consultation. Family planning can and should be a very informed process, whether in preventing pregnancy or planning for it.

 

The reality is that egg freezing is essentially an insurance policy. It is not meant to be a guarantee that you will need or want to use them. It gives a woman or couple the option shall you need or want to in the future, to use these eggs from their younger years when egg quality is potentially better.

 

Get the Facts
I always encourage women to get all the facts, consult with your OB/GYN and even make an appointment with a fertility specialist. You’ll be armed with the information you need to make the best decision for your future. Have an initial consultation, a fact-finding mission. More information is never a bad thing. Some may find out that they already have a decreased ovarian reserve and you can save yourself from the heartache in the future. Maybe your fertility specialist tells you they see no benefit in going through egg freezing. You never know until you get all the facts. Egg freezing is not a “one size fits all” family planning method but it can be seen as an insurance policy on your future family. Family planning is very personal and unique to each individual or couple.

 

What’s Next?
It’s time to really consider your 5 to 10-year plan. There are a number of questions to ask yourself and your partner such as, where do you see yourself? What are you doing in life? Where do you want to be in your career and family? Do children fit into that equation? How important is it to have biological children? 

Once you’ve had your consultation, considered the facts, and your desires for the future then you can decide if egg freezing is the right option or not. Till then, don’t let this study intimidate you from egg freezing.