8 Things You Need to Know about your IVF Protocol that No One Told You

Hi Maybes!

I’ve been a little quiet because…..I just finished my first  protocol for egg retrieval. We’re going to freeze and transfer in a few months once we get this thin lining resolved.

Updates on my cycle soon to come.

Having just finished the whole processes of stimulation and retrieval, I feel like there are things no one told me,practical things, that I never knew, so I’m going to share a few things I think might be useful to know before your start.

Step. Your. Sock. Game. UP
Seriously. You will be in the stirrups more in these 10-12 days then you probably have been in all of your adult life. Give yourself a boost of confidence. Give your doctor and staff something fun to look at. Keep them guessing.  Wear fun socks. Trust me on this.

Drink A Lot of Water

Why? Because you will have blood drawn every time you go in. Every. Time. You’ll feel like a pin cushion. If you’re like me (and hopefully you’re not), and have small and hard to find veins, drinking lots of water will help you a lot. Even if you’re a standard blood draw, being well hydrated makes your veins plumper and easier to find. It will make this part of the appointment go a little bit smoother.

My arm on day one of monitoring…
One of my arms on the last day of monitoring.

Give yourself an extra 5 minutes your first dose day

When taking your injections , its important that you dose at the same time every day, or as close as possible.  On your first day, or your first day adding a new medication, give yourself an extra five minutes, especially if its something like Menopur, that has to be mixed by you.

It can be a little cumbersome sorting out all of your needles and viles, mixing, and measuring. Add in at least a one minute pep talk to yourself the very first day to hype yourself up to stab yourself with a needle.

On that note….

PM dosing

The needles for the injections are not that bad

They really are thin, tiny needles. Unless you have a real fear of needles, you’ll be a pro at jabbing yourself after about three doses. Except for the trigger shot. THAT needle is longer, and a little wider, but it goes in your butt, not your tummy, and is intramuscular, going into muscle, so it needs a little more length and needs to be a little wider. Its all relative, because non of these needles in more than a few millimeters across.

For this process, a little tummy fat is a good thing!

Many of the stimulation meds are given subcutaneously, meaning under the skin. Usually you have to pinch an area of skin/fat on your abdomen. If you have a lil extra there, it will be a good for these purposes for this.

You can’t be Shy (because you may have to do your shots in a public space)

If you follow me on Instagram, you saw me post about my first public dosing. Long story short: I had the bathroom all to myself, them someone came in. With her nosey self, she lingered around, taking forever to wash her hands and re-applying her lip stick oh so meticulously, to see what I would be doing since by that point I had my supplies laid out. After a while I just said “F it! She gon’ learn today ” and proceeded with my shots.

I had 2 more times I had to dose in public restrooms. Fortunately, there was room and shelf (or shelf like) space in the stall where I was able to have more privacy. Except for the lady at the road stop that was telling me her whole life story from the other stall….

Bloat. All of the bloating. And Gas

I’m telling you because I love you. After a few days of stimulation meds, you will be a little bloated, OK, a lot bloated. And gassy. You’ll feel the pressure and heaviness of those enlarged ovaries (which is great!), but it makes you feel very bloated and full.  Your injection areas will be a little swollen as well. Its uncomfortable, but manageable.

 

Your mind will be a little foggy. You will have emotions and moods

This is commonly said, but I wanted to clarify. For me, it wasn’t the violent, quick, up and down mood swings, it was little things. I cried about something every day the first five days. Things that would usually just annoy me, made me really pissed off.  Things that wouldn’t bother me at all made me upset. It’s like PMS turned up a little. There were times in the middle of an emotional moment, I said to myself “why am I crying?” or “What is wrong with me?” I was very on edge.

The fogginess, I imagine is similar to what pregnant women call “pregnancy brain”. I just didn’t feel like myself. I forgot a lot. I felt like I was operating out of body a lot of the  time. It was just a general lethargy and sluggishness I fought through pretty much every day once things really go going. Some of it may not have been the meds, but also the overwhelmingness and newness of starting my first IVF cycle, and all that it meant. Just know that you will be in a strange head space, rather its med induced or not.

*Bonus Don’t call new people you meet by the name brand of one of your meds

This seriously happened to me, but I didn’t say it to his face. A group of my friends and I had just met some new people, and later I was trying to remember one guy’s name. It had a “V” and an “L”  in it somewhere. I said this with all seriousness:

Me: What was his name? Vivelle? Oh wait, that’s my estrogen patch.

 

 

 

Advertisements

November: Adoption Awareness Month

As we walk, sometimes crawl, though this infertility journey, we have to keep our minds and hearts open.

Of course, there is nothing like carrying your own baby, but as we all know, sometimes that’s not possible. That doesn’t mean you don’t get to have a family.

Maybe you use a donor egg.
Maybe you use donor sperm.
Maybe you use a surrogate.
Maybe you adopt. And maybe, you adopt an older child.

November is National Adoption Awareness Month. And while all adoptions are special, the focus of this month is on kids currently in foster care. Many of those are older, have siblings, or may have a disability.

Family is who and what you make it. We all want a new, snuggly baby to complete or family. But this month, while you think about family building, think about adopting from foster care, and consider older kids.

It may not be as easy a road, but no less rewarding.

adoption

 

Girl! You LookGood! (But at what cost) Mystery of Fibroids Pt 2: Beauty Products

photogrid_1472083488279.jpg

Whatever you do, who ever you are as a woman, you use some type of beauty products every day: Make up, relaxers, nail polish, lotion, hair spray, wax, powder,deodorant…..

But most of these items contain chemicals that can be dangerous to our health with long term exposure, even in small doses.

Talcum powder has been in the news a lot lately because of questions of cancer in women and in workers who mine talc. (Find out more here.)

Most women already know about formaldehyde and the possible link to cancer in nail polish, and other beauty products, like the Brazilian Blowout that was popular a few years ago. (here)

The question is though, do any of these beauty and health products cause or contribute to fibroids?

I’d like to preface this by saying that I am not a scientist. (though I was good at biology in high school, if that counts for anything) I’m just a woman with a little bit of time, and access to great wifi who wants answers, and wants to share the answers with you.

Let’s start with the mother of beauty products for many Black women: The Relaxer

For those of you who may not know:

A relaxer is a type of lotion or cream generally used by people with tight curls or very curly hair which makes hair easier to straighten by chemically “relaxing” the natural curls. The active agent is usually a strong alkali, although some formulations are based on ammonium thioglycolate instead.

-via Wikipedia

A relaxer is applied to “new growth” every 6-8 weeks to straighten the roots.

You can also watch this clip from Chris Rock’s Good Hair, where he explores relaxers, their frequency in the Black community, and an experiment with a chemist. Prince jokes aside, its a great way to gain an understanding of relaxers.

 In the last few years, many black women have decided to “go natural”, ditching perms and opting to wear their hair in its naturally curly or kinky state, or using heat to straighten instead of chemicals. Many women made this choice because it seems healthier, and part of that is the possible link to relaxers and uterine fibroids.

The rumor that relaxers, and other Black hair care products, may be linked to the higher rates of uterine fibroids in Black women has be circulating for a while. But is there any truth to this?

The most often sited study is this 2012 American Journal of Epidemiology study. The study is ongoing, and surveys 59,000 Black women 21–69 years old. The participants from around the country are asked to update their medical information and complete a survey every two years.  The study tracks various items, relaxer usage being one of them, by sending additional questionnaires for those who have been diagnosed with fibroids, and confirmed via ultrasound or other means. For the relaxer/fibroids portion, the researchers premise was: “Hair relaxers are used by millions of black women, possibly exposing them to various chemicals through scalp lesions and burns.”

Hair relaxers (straighteners) have been used by millions of US black women, often for long periods of time (6). Hair relaxers can cause burns and lesions in the scalp, facilitating entry of hair relaxer constituents into the body (714). The main ingredient of “lye” relaxers is sodium hydroxide; no-lye relaxers contain calcium hydroxide and guanidine carbonate, and “thio” relaxers contain thioglycolic acid salts (15). No-lye relaxers are advertised to cause fewer scalp lesions and burns than lye relaxers, but there is little evidence to support this claim (16). Products may also contain hormonally active compounds (17), such as phthalates, which are not required to be listed separately as ingredients and are often reported under the term “fragrances” or “perfume” (18). Cosmetic products are not subject to premarket approval by the Food and Drug Administration, and a complete list of ingredients is not mandatory (19), making it unclear what types of chemicals they contain. However, because the vast majority of hair relaxers list “fragrance” as an ingredient, and 100% of popular fragrances tested in a 2002 study were found to contain phthalates (18, 20), most hair relaxers likely contain these chemicals. In addition, some hair relaxer products directly list phthalates as one of their chemical ingredients (21).

 We’ll get more into phthalates later….Trust me. You need to know about them.

But the basic question is are Black women being exposed to harmful chemicals more and are the being absorbed quicker into the body via scalp burns?

Their conclusion:

In this large population of premenopausal US black women, we observed increased risks of uterine leiomyomata in association with ever use of hair relaxers, duration of use, frequency of use, and total number of burns experienced during use.

There’s a lot more to this study, and there are other studies out there, if you want to learn more. Please read the full study linked above as well as these articles/studies:

Journal of Women’s Health

Scientific American (a Black woman scientists take on some of the research out there)

Now if you can still hang with me I’ve got more. This is a long post, something I try to avoid, but its necessary sometimes.

Lotions, Shampoos, Soaps, Make Up

Above, there is a mention of phthalates.

What the f*** is a phthalate? (Pronounced phthal·ate )

I’m glad you asked.

Phthalates are a sort of plastic, and it is used in all types of  products, from CDs and toys to nail polish and hairsprays, and literally everything in between. Phthalates make plastics more flexible and durable. In beauty products, it is used to  make things less stiff and prevent cracking. On a label, phthalates are usually listed as: phthalate, DEP, DBP, DEHP, or fragrance.

This chemical can be found in many beauty product we often use like body washes, or perfumed lotions, deodorant, (basically anything that has a smell to it), and nail polish. The use of phthalates in cosmetics is banned in Europe, but still 100% OK here in the US. This chemical is so common in so many daily products (not just beauty products), that many of us have detectable amounts of the chemical in our body, and, they can be passed on from mother to child.

But phthalates are not alone.

They have a buddy: parabens

Parabens are often used a a preservative in cosmetic products, such as shampoo, toothpaste, lubricants (ex: KY Jelly), shaving gel, and spray tan solution. There is often more than one type of paraben in a product. Parabens on a product label are usually listed as methylparaben, propylparaben, butylparaben, or benzylparaben.

Parabens and Phthalates: Best Buds!
Parabens and Phthalates: Best Buds!

Phthalates and parabens do not need to work together, and they may not always be in products together, but very often when you see one, there is the other.

Now what is it about Parabens and Phthalates that is so bad? Well, they are both endocrine disruptors.  Endocrine Disruptors are chemicals that may interfere with the body’s endocrine system, and produce adverse developmental, reproductive, neurological, and immune effects in both humans and wildlife. (National Institutes of Health)

The ednocrine system is what produces hormones. Any system in the body controlled or affected by hormones could be impacted.

Getting the connection? Fibroids linked to increased levels of estrogen, natural hormone production possibly being interfered with by chemicals……

The problem is these two are in pretty much everything we use, including various beauty products. Many women are exposed to these chemicals at high rates, having them absorbed into the skin, daily, weekly, monthly via lotions, body washes, shampoos, nail polish, combined with their broader use in food packaging, plastic toys, toothpaste, and many other daily products. So there can be no conclusive evidence that these beauty products alone cause or contribute to fibroids, as they are so plentiful in our modern world, but as women, we are willingly exposing ourselves to higher doses.

 So do these products directly increase uterine fibroid risk, I side on yes, but not the beauty products alone.

Solution:

Look for products free of these chemicals. Organic and natural hair care and beauty lines. This might mean putting out a few extra coins, but it may be worth it in the end.

I use natural shampoos and conditioners, and I try to use natural oils and butters (shea, coconut) on my skin. Soaps have been a little more of a challenge for me, and I have not at all transitioned to “natural” makeup brands, though I’m a big fan of Shea Mositure products, including their foundation.

Sulfate free Shampoos

Three Top Paraben and Sulfate free Shampoos and Body Washes

Natural Make Up and Skin Care

What about all of the other things we do to beautify ourselves?

Waxing: 

Pretty harmless as long as your esthetician knows what s/he is doing, like using clean sticks and not double dipping. There are instances of STDs being spread due to bad practices. Otherwise, waxing is pretty safe.

Waxing Dangers

Manicures:

We all know nail polish can contain harmful chemicals like our buddies mentioned above and BHA (butylated hydroxyanisole). The curing process of a gel manicure, which requires time under a UV lamp, can create a new risk.  Prolonged exposure to UV light is known to increase the risk of skin cancer. (Think tanning beds)

If you can, find an organic nail polish (IDK how good they are or where you would even find organic polish, but apparently it is a thing)
Also, if you’re into gel manis, but sunscreen on your hands up to an hour before you go in. If they have you wash them, bring it with you to re apply.
Bottom line: You expose yourself to a lot of chemicals that may have negative effects long term, but there are ways to lessen  the damage.

7 things to know before getting a manicure

Gel Nail Safety Tips

Conclusion:
Chemicals are bad. They can cause or contribute to health problems, including uterine fibroids, but we can’t really avoid them in our day-to-day lives.

Make smart choices and eliminate or limit your exposure to these chemicals if you can. There is a risk for cancers, fibroids, birth defects, and a host of other issues associated with many of these chemicals.

Be BeYOUtiful, but don’t make yourself sick for it.

July: Cookouts, Fireworks, and Awareness

July for Blog

One thing I have absolutely NO problem doing on my blog or social media is shouting out, partnering, or spreading awareness about/with other group or individuals that are about women’s health in general, or uterine fibroids, infertility, or Black women specifically.

I discovered last year that The White Dress Project started an initiative to recognize July as Fibroid Awareness Month. I found out pretty much at the end of the month, but now that I know, I’m going to kick it off right.

July is Fibroid Awareness Month!!

This is an “unofficial” month of recognition and education on uterine fibroids. Some states have adopted, but there are about 45 to go.
Want to make it a nation wide thing? Sign this petition to send to Washington to make it happen ( I mean….they have a lot going on, but maybe something simple like this can make it through all the BS.)

Use this month to tell your story, make sure you’ve had your yearly visit to your gyn (*ehem* self), change your diet, schedule that myomectomy you’ve been putting off (trust me,you’ll feel 1000 times better!)

This month I’m going to publish Part Two of the Mystery of Fibroids focusing on beauty products as a possible cause or agitator of fibroids, and I’ll be sharing lots of articles and information on fibroids.

 

Check out the Fibroid Facts page for more information on uterine fibriods

 

 

 

But Why? The Mystery of Fibroids Part 1: Estrogen Dominance

 

12592771_10153757131372860_5959456617222789897_n

By now we all know that up to 30% of all women will be diagnosed with uterine fibroids by the time they’re 35 , and up to 80% of all women will be diagnosed with uterine fibroids by the time they’re 50. African American women suffer more severe symptoms, they grow more quickly, and happen at a younger age.

The real question is ‘Why?’

Is it genetics? Food? Environmental factors? Cosmetics? Estrogen dominance? Some combination of these?

When I was first diagnosed with fibroids, I wondered “how?” How were there so many? How did they grow so large? How did I not know? What caused them?

Now, three years later, there is no sign of them (thankfully) at this point. What’s changed? I haven’t had a relaxer since 2005. I haven’t been on birth control since about that same time. But, my diet  and exercise routine now is actually worse than it was prior to 2013.

I took some time to dig into some factors and theories regarding uterine fibroids. There’s a lot more to dig through than I thought there would be, so I am breaking this into a series, with each possible cause getting its own post.
First up: Estrogen Dominance

 

Estrogen dominance: A condition where a woman can have deficient, normal or excessive estrogen, but has little or no progesterone to balance its effects in the body.

Estrogen dominance is more of an imbalance, in the sense that usually its not that someone’s body is making an abundance of estrogen (though that could be the case), just that the balance of estrogen and progesterone in a woman’s body is off.

Our Hormones in Blance (graphic courtesy of fibroidelimination.com/)
Our Hormones in Balance
(graphic courtesy of http://www.fibroidelimination.com/)

Before I go deeper, let’s first review some basics of a woman’s biology. You’ll need the review to get a full understanding of Estrogen Dominance.

As we all know, women have menstrual cycles. A cycle starts the first day of your period, to the first day of the next period. The average menstrual cycle is 28 days long, but can vary form woman to woman.

The two main sex hormones in women are estrogen and progesterone. They work together to maintain balance in our body at all times. 

Estrogen regulates menstrual cycles, promotes cell division, and in puberty, the development of breasts, growing pubic hair, etc.

Progesterone maintains the health of a fetus. It protects us against the  effects of estrogen by stopping further ovulation the second half of the menstrual cycle if a woman is pregnant.

Estrogen is highest in the first half of your cycle. It reaches highest levels during ovulation, then drops and progesterone rises. Progesterone is released during ovulation. Some testosterone is also released around the time of ovulation. If you do not get pregnant, you have a period and everything starts all over.

 

Now that the review is out of the way, let’s get little more into ED.

Because our bodies need estrogen and progestoreone to maintain our body’s reproductive cycle, it is important that they stay in balance.  They counter each other. If/when that balance is upset, even on the smallest level, there can be problems.

How do you know you have a hormonal imbalance of any kind? Some symptoms of hormonal imbalances may include:

  • Irregular Periods
  • Sleep Problems
  • Acne
  • Foggy Memory
  • Digestive issues
  • Fatigue
  • Rapid Weight Gain/Loss
  • Vaginal Dryness
  • Headaches
  • Breast Tissue Changes
  • Loss of Libido
  • Infertility

 

Some symptoms or conditions thought to be the result of Estrogen Dominance specifically may include:

  • Fibrocystic breasts
  • Endometrial (uterine) cancer
  • Polycystic ovaries
  • Uterine Fibroids

 

What causes the imbalance?

Several possible things:  Low progesterone levels/production,  chronic stress, synthetic estrogen (birth control pills, HRT [Hormone Replacement Therapy]), as well as environmental hormones and hormones found in food(diet)

 

Some hormone levels naturally drop with age, so as we get older, hormone imbalance of some sort is inevitable. So if our progesterone levels decrease, and our estrogen does not decrease at a comparable rate: Estrogen Dominance.
Of course, taking any hormonal birth control or HRT will alter the body’s balance. Birth control is made to fool our bodies prevent a true period. These two factors seem like obvious reasons for the body to be out of balance.

But what about food and environment?

In foods and the environment, we are exposed to Xenoestrogens.  Xenoestrogens are are a type of xenohormone that imitates estrogen. They can be either synthetic or natural chemical compounds. (Wikipedia)

With so many processed foods, genetically modified foods, pesticides, hormone injected meats, and foods with soy (which is a known natural xenoestrogen) its no wonder that our hormone levels are affected by what we consume. There is a big movement for less additives, and preservatives in foods: clean eating. It makes sense. With so many additional chemicals on and in food, the long term affects can’t be good for us. Does ingesting so many additional hormones from meats and chemicals in foods not initially meant for human consumption hurt us? I’m sure is doesn’t help. Do they contribute to an increase or decrease of hormones? Its very likely.

On the same road as food is environmental factors. Many of these, we have very little to no control over. Many environmental chemicals are also xenoestrogens. Many of which are found in daily beauty products (Post number two in the series). The main culprit is plastics. Remember the whole BPA in plastic bottles thing? The compound is found in everything from drink can coatings, to DVDs, to water bottles. It can disrupt or mimic natural hormones.

 

So what can you do?

You need testing to determine your hormone levels, which can only be done by your doctor. They will be able to determine if your levels are within the range of “normal”.

Outside of medical intervention, things can be done on your own to help balance your levels.

Changing the diet is the biggest thing, and probably the hardest for many. Let’s face it: fruits and grilled veggies are very tasty, but sometimes, a big ol’ cheeseburger and fries just tastes and feels sooo good.

Modifying diets to eliminate or greatly reduce soy, meats such as beef, and processed foods decreases exposure to additional estrogens or estrogen-like compounds. Of course, increasing exercise and being more active will also help.

There are various diet programs out there geared towards fibroid elimination. I don’t make it a habit of publicly endorsing programs/people/things that I haven’t personally tried on this blog. I would say if you’re going to try one of these programs, do your research.

Beware of your plastics use. Try not to warm up items in the microwave in plastic containers. The warmed plastic molecules can possibly seep into and contaminate your food. This is in very, small amounts, but over time, this could increase estrogen in your body. Don’t drink out of bottled water bottles that have been sitting in a hot car (same principal as microwaving in plastic), and try to buy water bottles (and bottles for babies for that matter) that are labeled BPA free.

 

There is really a lot more to say on Estrogen Dominance, its part of the reason this post look literally months for me to get up. I kept researching and trying to figure out what to write and what to leave out. At the same time, I kept discovering more stuff!

I hope this was a good first step to learning more. I definitely recommend taking the time to do more research on your own. You can start here:

butternutrition.com/estrogen-dominance-hormonal-imbalance/

www.ecopedia.com/health/estrogen-dominance-how-food-affects-men-and-women/

www.drlam.com/blog/estrogen-dominance-part-1/1704/

 

Next post in the series: Beauty Products and Fibroids

I’m talking relaxers, lotions, nailpolish, makeup, hair glue…..errthang.

 

Doin’ Too Much: Surgery, Change, and my Holiday

Most people’s holiday seasons are filled with family, food, drinks, and relaxation. Mine had some of that, but also included hysteroscopy, estrogen, moving, and bed rest.

 

In short, I’ve been having issues with my cycle, and my RE and gynecologist both suggested going back to my surgeon to get a better look at what is happening. My GYN suspected Asherman’s Syndrome.

The Monday after Thanksgiving, I went in for a laproscopy and hysteroscope. The surgeon did find some scar tissue that formed since the last procedure and removed it. He also found a tear that he repaired. I was put on a two month regimen of low dose estrogen (to be followed by 15 days of progesterone) to help restore my thinned lining. He also inserted a cook ballon to try to minimize scarring and adhesion inside my uterus. I had to keep the balloon in for 7 days. It was not the most comfortable thing in the world. I went the office the following week to have it removed. Having it taken out was uncomfortable more than it was painful.

The estrogen so far has given me headaches (the first week or so), and had my face broke out like I was 13. Right now, nothing major in terms of side effects, but the first two weeks…….

20151210_142313.jpg
This picture does my breakout no justice. My skin was horrible. I haven’t had a breakout like that since I was 13 or 14. Yay estrogen.

The procedure seemed to go pretty well, and I recovered well that day, but I didn’t bounce back like I thought I would. When I had this same thing done in 2013, I flew out to Atlanta the next day for work. Was I 100%? No, but I was at least at 75% This time, it took me about four days to feel back to normal. By the time I was feeling close to normal….it was time to pack up to move…to an entirely new city. I was limited in what I could do in terms of lifting, but I did move a suitcase that was a little heavier than I thought, and immediately felt weird. I knew I needed to sit my ass down and not lift anything. Which I did…for a few days, then I did it again. My doctor said I irritated the muscles in the pelvic area, take it easy.

I did….a little, but then it was Christmas. I had done no Christmas shopping, my mom was coming to stay with us for two days, which means I had to clean, and I had to cook my contributions to Christmas dinner. Which means, not much rest, but a lot of 800mg ibuprofen.

Finally, I was able to rest for a few days, and I do feel mostly better, after a month.

This procedure was important for me because this is the set up work to see if I can carry a baby. Aside from my left tube being blocked (not such a big deal), my lining is thin and my uterus is small. These things might keep me from carrying my own baby. I go back in April for another scope, to see if the hormones have made my lining thicken at all, and if having the balloon in for 7 days helped with the adhesion/scarring. As much as I try to downplay this as a minor procedure, it is a big deal, and I’m a little worried that all that I had going on immediately after the procedure may affect the final outcome.

We do this a lot, those of us who struggle. We don’t want to break down in front of those who know what we’re going through(or even those who don’t). We don’t want to admit the stakes even to ourselves sometimes in order to keep our peace and a little sanity. But, we need to. We have to come to terms with what is happening with our bodies and what is our options are.

 

The good news in all of this is: NO Fibroids were found! Two years fibroid free since my June 2013 Myomectomy.

 

Happy New Year

 

Doing Big Things!

 

For all of the years I’ve lived in the DC area, I’ve never been to any official, (or unofficial for that matter) CBC events. Why? I don’t know. Probably the same reason I’ve never been to a HBCU homecoming: I just haven’t. Howard is right down the road, and I have several friends that are HBCU Alumni. There’s no excuse. Yes, I know my Black Card may be in question for never experiencing homecoming. I’m accepting all invites, since it is homecoming season if anyone wants to help me rectify that situation.

This year, I finally made it to CBC, and not just to party. The White Dress Project, a non-profit that advocates for uterine fibroid research and education, held two events and raised the profile of the organization and fibroid awareness.

 

Congressional Briefing (minus Me) Photo Credit: White Dress Project Facebook
Congressional Briefing (minus me)
Photo Credit: White Dress Project Facebook

On Wednesday, a few members of the WDP, along with several medical professionals, participated in a congressional briefing on Uterine Fibroid Education and Awareness hosted by Rep. David Scott of Georgia.

This was really the highlight and the most important part of being at CBC. I had on my schedule, and planned to be there, but unfortunately I had to cancel out at the last-minute. I was definitely in my office with the pouty face because I had to miss it.

This briefing was a major step in getting the cause out there and helping to earn support for officially designating July as Fibroid Awareness Month. Mr. Scott already introduced HR RES. 268 at the end of the last legislative term, “Supporting the designation of July 2015 as Uterine Fibroids Awareness Month”.

The next day, the DMV Leadership of the White Dress Project hosted an event. Part social, part informative. The ladies gathered health professionals, including a therapist, an OBGYN, and a surgeon, who happened to be my surgeon Dr. MacKoul, to answer questions, talk about the epidemic if uterine fibroids, treatment options, and how to deal with the emotional effects of living with fibroids.

 

White Dress Project DMV Social at CBC (I didn't realize we were not doing the silly faces anymore...) Photo Credit: White Dress Project Facebook
White Dress Project DMV Social at CBC
(I didn’t realize we were not doing the silly faces anymore…)

The really great thing about the event was not only meeting other women affected by fibroids, but hearing everyone’s stories. Being able to relate to taking hormones, or having to pee every five minutes, or the literal and figurative weight that is lifted once the fibroids are removed. To see how everyone bounced back, and in spite of possibly having fibroids re-appear, or questions on fertility post myomectomy, the  determination to move forward, and excitement of these ladies to educate others and advocate on uterine fibroids was amazing.

I was so excited to meet new women, and finally get to meet the White Dress Project founder, Tanika Gray, because……

 

I will be working with the White Dress Project as an ambassador, working to raise awareness and  get Fibroid Awareness Month recognized on a State level!

 

We Can Wear White
We Can Wear White

 

I’m so excited about this opportunity!  Please stay tuned for more updates, posts, and events on my journey with the White Dress Project.

 

Fibroid News You Can Use

Blog graphic

The summer season is officially over, and so is my blog break.

This summer was great: A trip to Vegas, wedding planning, and cookouts.

To get back into the swing, I want to highlight some stories from around the web on fibroids.

 

Meds on the Way?

A medicine designed to help shrink uterine fibroids is currently in the human trial phase. This is good news, but my concern is it becoming one of so many drugs that are pushed on people, and the pharmaceutical industry winning big financially, and in the long run the people lose and no other research or prevention methods will be tried. Don’t get me wrong: medicine is wonderful and in most cases can really help to manage symptoms or even cure conditions. For some situation, drugs are the only thing that will help. However there’s a point where it becomes more about getting patients to take the drug for a solution, and not looking at other methods, and that for me is a problem.

One of the researchers is quoted in the article as saying “There’s no rhyme or reason why women get fibroids, and there’s nothing they can do to avoid developing them; it’s just something that happens…

What?!

This quote irritates me. The medical community, or us as women should not be content with a ‘that’s just the way it is’ attitude.

Check the article out here. If you’re in the San Diego area, you may be eligible to participate in the trials. (The article is sponsored by the firm conducting the research, Precision Research Institute)

 

Money for Research!

Delta Sigma Theta Sorority, Inc has awarded the Distinguished Professor Endowed Chair Award to Dr. Darlene K. Taylor of North Carolina Central University. Dr. Taylor associate chemistry professor, will use the $200,000 award to support university efforts in integrated biosciences that focus on uterine fibroid tumor research.

Please click here to read more about this wonderful grant from the ladies of Delta Sigma Theta, and the work or Dr. Taylor.

This news makes me excited! A Black woman, being awarded a grant by a Black sorority, to research uterine fibroids. Something that affects up to 80% of women, and Black women are affected at a higher rate. Girl Power!

Woman Power!

First, a Woman, a BLACK woman in STEM (Science Technology Engineering Math) is amazing! The numbers of women in STEM are low, and even lower for minority women. There is something about this that makes this grant and her research even more amazing. This is why we need more women in STEM: so that they can be a voice in the lab.

There’s progress, which is always a great thing.

 

I hope to share some updates soon about efforts that I’m fortunate to be a part of to help spread fibroid awareness.

I’m also participating in Blogging 201, so you may see some updates on the website, and maybe a few out-of-place posts. I really want to take this little blog to the next level. The craziness of wedding planning is slowly coming to a close, so I will be back to having my free time to devote back to blogging and other efforts.

 

Thanks for sticking with me!

 

How Congress Celebrates NIAW….

…and it’s not by recognizing the week with a proclamation.

Sounds about right....
Sounds about right….

Someone I know shared a little nugget about Congress and their plan to overturn a DC law that prevents women from being fired for using IVF or getting pregnant out-of-wedlock. At first, I thought it had to be some kind of Onion type article, but no. This is an actual thing.

That’s right, people of D.C.: members of Congress just voted to let your boss fire you for personal decisions you make at the doctor’s office — because your boss believes those decisions aren’t consistent with his religious beliefs. Now, the whole House may take a vote on this discriminatory measure.

 

(For those that don’t know, click here for a little history about how/why Congress can do this in DC.)

So because you don’t agree with how someone starts their family, they can be fired? That sounds real Christian. (feel the sarcasm)  I really want someone to show me the passage(s) of scripture where God said IVF will send you to hell. Don’t these people know there was infertility in the Bible, even a miscarriage?

I can’t even deal with this.
This is why it’s so important to speak out and educate others about infertility issues. I choose to believe if people understood more, they wouldn’t say and do rude or insensitive things,  and they wouldn’t make these types of judgments.

 

Anyway….

You can catch the full ACLU article is here

Also, a take on this from The Frisky here.

 

 

Power Morcellators: The Saga Continues

Two weeks ago, I wrote a post about on the current power morcellator debate in women’s healthcare as it relates to myomectomies and hysterectomies.

Well, this is NOT going away any time soon. In fact, it seems the research and debate are really just getting started.

The insurance company Highmark ( a part of the Blue Cross/Blue Shield) announced Saturday that it will no longer cover laprocsopic uterine procedures that use power morcellators. Highmark is the first, and right now the only insurer to do this.

University of Pittsburgh Medical Center (UPMC), the largest hospital network in Western Pennsylvania, has suspended the use of power morcellators. 

And what would a controversial medical device or procedure be without a class action law suit?!

Yup. On my way to work this morning, I heard the “Have you or a family member  been diagnosed with cancer or other serious medical complications after a power morcellator procedure for removal of uterine fibroids?! If so, call the law offices of ….” (if you actually want to learn more about this gathering of information for the suit, click here)

I feel like there should have been better research and statistics on the instances of uterine cancers upstaging  after any uterine surgery years ago. But, again, fibroid and other uterine disorder research seems to be low on the medical research totem pole. If there were better research and follow up done years ago, and a continuing effort made to understand fibroids, instead of just snatching out uteruses (Uteri? what is the plural of uterus?), some of the controversy may have been prevented. Lives may hev been saved. Why wasn’t some sort of pre screen for cancer (besides an MRI) figured out and made a standard part of pre op testing for myomectomies and hysterectomies of any type? Especially if it is known that MRIs are not effective in finding Uterine Leiomyosarcoma (LMS).

As a woman, the lack of research and information makes me think what MJ said was right….they don’t really care about us (or our uteri).

 

They just don't.
They just don’t.