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

 

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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!

 

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.

 

 

 

Power Morcellators, the FDA, and You

 

One of the scariest things about having surgery is that you don’t have any control over what happens, and technically, neither does your doctor. Although everything may seem fine on x-rays or MRIs, and all of your pre op testing could show you’re low risk  and everything should go smoothly, on any given procedure, things can go left. The doctor could find more of a problem that s/he expected, or a problem they weren’t anticipating at all.  You could have a reaction to some of the anesthesia. Your doctor could make a mistake. Your doctor may depend on the research and information on a particular technique or tool used in surgery, only to find later there are risks and side effects not previously known. We’ve seen this with the DaVinci robot, and now with power morecellation.

Power what?

Via Wikipedia:

morcellator is a surgical instrument used for division (morcellation) and removal of large masses of tissues during laparoscopic surgery. It can consist of a hollow cylinder that penetrates the abdominal wall, ending with sharp edges or cutting jaws, through which a grasper can be inserted to pull the mass into the cylinder to cut out an extractable piece.

morcellator

So basically, a bladed, surgical  instrument. Morecellators are often used with laparscopic hysterectomies and myomectomies. When the fibroids or the uterus is too large to fit through the small ports, the morcellator cuts everything into smaller pieces and they are sucked up into a tube.  Seems reasonable right? Well the problem is that some of the smaller pieces of tissue can spray out into the body. Still, the surgeon must go in with suction and get those stray pieces, right? Sure. Or they can use a containment bag  attachment that can help prevent some of the extra spray out of the removed tissue.

The problem is this though: Some women have a “hidden” cancer ( leiomyosarcomas) that cannot be detected until the pathology tests post op. So, little bits of cancerous tissue land on other ares in the body and grow, causing the cancer to become worse. (Upstage. Going from a stage 1 to stage 3 or 4) Now we see the problem.

Morcellation Explained via Prevention Magazine
Morcellation Explained
via Prevention Magazine

 

 

To be fair and to be clear, the incidents of  leiomyosarcomas are very rare, up to 1% of women having fibroid surgery also have cancer. (One study states 1 out of 415 women with fibroids also have leiomyosarcoma)

[UPDATE]

There has been some debate on the actual numbers of women who have surgeries who also have LMS. Several doctors disagree with the numbers the FDA put out (similar to the ones I’ve stated above) and say the instances are even less.

From the blog of Dr. William Parker-UCLA:

Some gynecologists and major medical centers had been quoting the risk of a woman having surgery for what are thought to be “fibroids” and being found to, in fact, have a leiomyosarcoma (LMS) as 1 woman out of 10,000.  However, this number is incorrect.  The rate of 1 in 10,000 is the incidence of LMS in the entire population of women, meaning that for every 10,000 women in the US (or elsewhere) 1 will have LMS.   This is a very different number than will concern women with fibroids.  Although many women will have some fibroids in their lifetime (77% of women by age 50), only a small minority (20%) will ever need treatment.  For these women who have symptoms bothersome enough to need treatment for fibroids (medication, surgery, UAE, HIFU), the risk of having LMS had been previously been stated as 1 in 1,332, based on a study we published in 1994.  So, that’s the first difference: 1 in 10,000 women in the entire population versus 1 in 1332 women who actually have fibroids and need surgery because of fibroids.

He also added:

Let me say this clearly: any study of surgery for fibroids where no LMS was found was excluded from the FDA calculation! This is a very large number of studies since LMS is a very rare disease and is infrequently found.

Dr. Pritts looked at ALL articles where surgery was performed for fibroids and the pathology of all the removed tissue was both analyzed and reported in the paper.  So, studies where the incidence of LMS was “0″ were included, as they should be.

So, just to add this to the on going discussion/debate. Carry on. To read Dr. Parker’s full post and other information, please click here

This very thing happened to a doctor in Boston, Amy Reed, which is how this whole debate began.

She and her husband have been on a campaign to stop (even if temporarily) the use of power morcellators in fibroid surgeries. Several hospitals in the Boston area limited the use of mocellation (with bag only) shortly after she went public with her story and her concerns. Later, they enacted a full moratorium on morcellators.

In April of 2014, the FDA (Food and Drug Administration) issued a warning against the use of power morcellators in uterine surgeries.  Johnson & Johnson subsidiary Ethicon  stopped selling its morecellators after the statement from the FDA .

Earlier in the month (July 2014) after an open comment period, the FDA held a meeting on the safety, risks and usage of power morcellators.

You can find some of the materials from the meeting  here.

There are several video presentations available on-line as well. Here are the links to a few.

Dr. Shannon Laughlin-Tommaso – Uterine Fibroids:  An Introduction (This is a great presentation on fibroids!)

Dr. Jubilee Brown – A Balanced View of Power Morcellation (Presenting on behalf of the AAGL)

 

So where do I stand on this issue? I wouldn’t choose to have my fibroids or a hysterectomy dealt with by power morcellation. Why?  I wouldn’t want to take the additional  risk that I could spread an un detected cancer through my body.  Surgery is risky enough. Even though the risk is low (less than 1%), its just not a chance I would be willing to take. The stakes are too high for me.

HOWEVER, I will say I believe that more research is needed before completely banning its use. Since this has become an issue, several women have come forward to say they now have stage 4 cancer, and some have died (obviously their families speak for them) as a result of power morcellation spreading undetected cancerous tissue throughout their abdomen.

I think the patient,  should have the ultimate say in the type of procedure until there is definitive proof on the risk. There should be a way to test before having  surgery to see  if  leiomyosarcomas are present. This way, the patient and doctor can make a safe surgical treatment decision.  I’m an advocate of “My body, my decision” on medical issues anyway. As a patient, you have to ask all the questions, get as many informed, educated opinions and make the best decision for you, whether it’s for allergy pills or a surgical procedure. You have the right to make the decision you believe is best for your body and health that you are most comfortable with.

The fear for some women and doctors, is that options will be limited if the power morcellator is no longer available. Especially for those who face hysterectomy. Again, I say choice is key. More research and ways to pre screen for cancer can make this choice easier for patient and doctor.

Which leads to the question I’ve had for a while: Why isn’t there more fibroid research?

 

So, what say you? 

Would you choose this method for your surgery?

Have you  had a myomectomy or hysterectomy using power mocellation?

Do you think there should be a permanent ban?

The Surgery-Part Four: Recovery

The final installment of the “series”: The after party….I mean aftermath!

At 3am I was up and couldn't really move so this happened.
At 3am I was up and couldn’t really move, so this happened.

 

For me, the 24 hours immediately following my surgery was a bit blurry. I still had all types of sedatives and anesthesia in my body, plus some percocet. Oddly I was wide awake at 3:00am for about 3 hours the first night. (which is when the above Instagram post happened)

The basics are this: You will be in pain. You will need help. You will need naps. You will get bored. You will feel better every day.

 

Pain: Everyone is different, but for me, the first three days were moderate in terms of pain. I’d say my pain was anywhere between 7-10, and 10 only being the first 18 hours or so.If your procedure involved a full (open) or partial (a hybrid) myo where you had a 3 inch or more incision, your abdominals will be almost useless for a while and sore.  Very sore. The basics of sitting up on your own, even rolling over in your bed will be pretty much impossible for the first few days. You get creative after a while and figure out how to maneuver around, but at first you’re like a little baby-unable to move without an adult to help you. Be prepared to be uncomfortable. You will be sore, inside and out. Don’t be ashamed to take the pain meds your doctor prescribes for you. (as instructed)

Coughing, sneezing, and laughing will bring discomfort. Hug a pillow tight/close to your for sneezes and coughs.

If you had a laprosopic procedure, you’ll have residual gas in your body that will make you a little uncomfortable for a few days.

I slept for about 3 hours when I first came home, and I only got up to use the bathroom walk, and take some meds. A word of caution on your first trip to the bathroom: If you had a catheter inserted your first trip will….sting a little. I’ll just leave it at that. It will pass after the second or third go.

I was sore, I had cramps, and it was difficult to move. But, you need to move.

Moving Around: I had to walk every hour or two around the apartment. This is something you will most likely be told to do regardless of the method or if you’re out patient or not. Walking helps prevent complications after your surgery. Walking  helps to: 1) Clear and improve blood flow to your lungs and 2) Prevent blood clots. (More details on post surgical movement here)  No ones asking you to walk a mile, but quick lap or two around your apartment or one level of your house will get the job done. It will be slow going at first, but after a day or two, you will start to move a bit better.

Appetite: I didn’t really have one for the first 3 days. When I did eat, soup, crackers and toast were plenty. Mostly I ate because I had to eat with the medicine I was taking. Your appetite will slowly increase. (vanity plus: you WILL lose weight.)

The downside was people around me were eating awesome food that I just couldn’t partake in. They had Pizza Hut (one of my favorite things!), my mom cooked one night, and everyone  sat around the table and had dinner while I laid in my bed drifting into a percocet induced sleep. I couldn’t stomach all that heavy food, but that doesn’t mean my inner fat girl wasn’t sad that she missed all that tasty food.

On a related note, you won’t want to eat anything too solid because…well, it has to come out. Again, your abs will be compromised, and any straining is not recommended. Colase or other stool softener will be your friend. Also, many pain meds can cause constipation, so help with your visits to the bathroom via softeners is a great thing.

 Help: Because you’ll be in pain, and your abs will be shot, and you’ll be tired….you’ll need help. You just will. I needed help getting in and out of bed, walking, getting food, putting on lotion, doing my hair, pretty much everything. The first 3-4 days for me were when I needed the most. Because I had a hybrid procedure, and my incision was not clear across my bikini line, I think I was able to start to bounce back a little sooner. (One of the benefits of a laproscopic or hybrid procedure) My family was great, and made sure I was comfortable, made me get up to walk, brought me snacks, pretty much waited on me hand and foot. That probably won’t happen again, so I enjoyed it.

Rest: Naps are awesome no matter what.  When recovering, you will need to take them more than you think. Not so much because you want to, but your body will let you know that its working hard and needs to recharge. I couldn’t even make it through a movie or more that 10 pages into a book the first few days. Listen to your body: rest when it tells you. You probably won’t get to rest like this again for a long time…maybe never, so take advantage

Boredom: After a few days, boredom/cabin fever will set in. Going from bed to couch, to bed is not that entertaining. Books, movies, and company, even Facebook, Twitter, and Instagram are great, but you start to get stir crazy after a while. For me, the mere fact that I couldn’t really go anywhere made me fidgety. Again, selfies and social media filled a lot of my bed rest time.

(Exhibit B)

Bed rest pop art

 

My recovery was pretty average I guess. I did have a  high fever for 2 straight days around day 4, and went to the ER. I felt pretty miserable and sluggish. They gave me an IV and sent me to get a CT scan to make sure there was nothing going wrong.   The contrast solution I had to drink (which I think they mixed with something to make it more palatable) wasn’t so bad. The machine itself was fine, I’m not claustrophobic or anything, but something about the actual scan process made me horribly nauseous! As the scan went on (probably lasted all of 1 minute), I got more and more sick. By the time I got to a point where I thought I was going to spew everywhere, it was over.

Those 2 days were probably the worst of it.

A few days later, I went for my follow up with Dr. M. Everything looked good.

The good thing was I got to spend time with my friends and family that came to help and check on me, especially my mom. We got to talk and spend time together. I got her hooked on my favorite “rachet reality show“. I’m not even going to mention the name. The fact that it comes on VH1 and can be labeled rachtet should be enough.

I got to watch a good family friend win a Tony award! In that moment, I got so excited, I kinda forgot I had surgery 2 days before. I screamed and jumped up off the couch. Damn near busted my stitches. Literally.

 

The fibroids are gone. Now what?

 

The Surgery-Part Three: Surgery

 inovaFO

Continuing my series to help those approaching their Myomectomy. Today’s post is about the big day!

**Soo…I meant for this post to be published on the anniversary of my surgery, June 7. But life happened and I didn’t get a chance to post. It’s here now! Please Enjoy.**

 

I got up early in the morning to get ready for the day of reckoning.  My nerves did start to kick in a bit, and show up in the form of being overbearing, but I was still ready to move forward. That morning (and the day before) I had to wash with an antimicrobial soap called Hibiclens, but no lotion, oils, or creams, so my skin was free of microbes… but tight and dry!

We got the hospital early. Not on purpose, but around DC, you never know what traffic will be like so we left about an hour and a half before I had to be there. The hospital is a 35 minute ride without traffic.  On that day, traffic was light so we got there 30, 45 minutes before my  scheduled time. My procedure was outpatient, so I didn’t have to pack a bag.

If I could say there was a great part of waiting, it was that one of my best friends, who had surgery to remove fibroids and endometrosis a few years before, called to pray with me. That meant so much and calmed my spirit.

Checking in meant going over all of my personal information, insurance information, and who to contact in case of an emergency. You get asked that all the time, but this time it really sunk in, probably for the first time that something could go wrong. While the chances were slim, it was entirely possible for something to go wrong: A cut too deep, the wrong combination of sedatives, emergency hysterectomy…..anything. DON’T panic or worry over those things. You will think about it, and the closer you get to lying on the table, the more real the possibility becomes, but you’ll be fine!

Finally,I was called to the pre op area, but I could only take my mom back with me. The nurses I had were awesome! They were so friendly, efficient and knowledgeable. Another great part of this prep team: the woman who put in my IV.  Every time I go to a doctor for blood work, or had an IV put in, it’s an ordeal. Every. Single. Time. Bruised arms and multiple sticks are the norm. When I had my wisdom teeth pulled several years ago, they just put the IV through my hand because those veins were easy to see/get to. Every once in a while, I will someone great at their job. She was one of them. She came in, introduced herself, I gave her the “they always have a hard time” speech, and she said “oh, don’t worry”. She found a spot, put the line in, and I was good to go!

While my nurses were getting me prepped, Dr. M popped in and looked puzzled as to why I was still sitting around talking. (Really, he looked annoyed)  My surgery time was 9:00am, but he was ready to go about 20 minutes early, so they sped up the process of getting me prepped.  He answered any last-minute questions and gave my mom the prescriptions I would need.

A word of advice: Ask any last-minute questions of your doctor the day of OR have a list for your family if the doctor visits while you’re in recovery.

The anesthesiologist came in and put in the juice. I went from slightly on edge to fits of giggles in about 10 seconds. My family (who were all allowed back at that time to see me before I went in) thought this was hilarious and captured the whole thing. Yay smart phones….

 

The sedative kicked in.  Ish got real.
The sedative kicked in.
Ish got real.

The next thing I knew,  I was looking at ceiling go by. The sedative was starting to do its job, and I was fading in and out. I remember going into the operating room, and thinking “Wow, there’s a lot of stuff in here!” I remember being lifted on to the actual operating table. I remember the mask being put on my face. He didn’t ask me to count down, just to think about a vacation or being on the beach……..

The next sensation I can remember experiencing: pain.  Awful, horrible pain. And nausea. I will say, that if you’ve had a baby, the post op cramping might not be as bad for you. I  remember saying (I felt like I was yelling, but it was probably a whisper) “I’ve gotta throw up”. Then I did (Reaction to the anesthesia). They gave me something in my IV to help with the pain and the nausea, and I was in and out of sleep for about an hour. I mostly remember being in a sort of limbo state. I could hear people around me, and I was slightly aware that I was moaning from time to time, but I was  woozy and not quite able to move or be 100% present. I remember a  nurse saying she couldn’t give me any more pain meds or it would slow down my breathing, and thinking to myself:  “And?…” Yeah, I was in that much pain.

Finally, I was semi lucid, enough for saltines (maybe they were graham crackers?…) and ginger ale. I was still very woozy, but more aware of my surroundings and better able to communicate.  I couldn’t speak loudly because I was intubated (breathing tube) during the surgery. If you will be put under, you will most likely have a breathing tube inserted as well after you are sleep. When it’s out, it leaves your throat very scratchy for a few days.  After I was “up” (and I use that term loosely), they moved me to phase 2 of post op.

Phase 2 is where they let you rest a bit more in one of those hospital reclining chairs. By then, I was un hooked from all of the heart monitors, but I think I still had an IV. I still had a bit of nausea, but they said I was OK to go home.   In the hospital, they give you these  polyester/mesh hospital panties with a pad. They’re not  sexy, but they were surprisingly comfortable! They’re like high-waisted boy shorts, perfect to not rub your incision and/or laprascope port areas. You will have some bleeding that day, and you probably won’t be lucid enough to put in your own pad, so just rock the hospital panties home. Trust me. In fact, I wish I had asked to take a few pair home.  Because I was still feeling nauseous,  the nurse gave me a few of those blue “barf bags” and alcohol pads. He said taking a whiff of the alcohol pad can sometimes calm the nausea.

I will say my only critique of my surgical process and the hospital was I felt like they were rushing me out. I really think I could have stayed another hour resting OR actually stayed overnight.

In my wheelchair, nodding off, they were finally ready to discharge me. The nurse gave  my mom after care instructions, signed something, and they took me down to the lobby. O and my dad were there with the truck and helped me in. I tried to put my own seat back and went back to far….bad choice. With no abdominal control, that sudden flop of the car seat was a pain I’ll never forget.  Don’t try to do anything for yourself the first 72 hours at least.

 

Day Of take Aways:

  • Have an emergency plan, make sure your family knows your wishes (the hospital will ask you about those things)
  • Have a final list of questions for your doctor. Ask your nurses and anesthesiologist questions too
  • Be kind to your nurses!
  • There will be pain post op
  • Take home the hospital panties. (Thank me later)
  • Don’t try to boss your family around and insist you can do things your self 2 hours after surgery with anesthesia still in your system.

The Surgery-Part Two: Preparation

 

There are fibriods. They’re causing problems. I decide to have them surgically removed.  Now that we’re all caught up, the next step in this thing is the prep and time leading up to the actual surgery.

Prior to this, I had never had any type of surgery or extended hospital stay. I wasn’t really sure what to expect. I thought I’d just make the appointment, take time off and go in. Well, in the words of Charlie Murphy: “Wrong. WRONG!” There was a lot that needed to be handled before I went in. In the month leading up to the surgery, I had a lot to do.

I was very wrong.
I was very wrong.

Time off from Work

Well, I definitely did not think this step was going to be as involved as it was. I had only been on my job six months at that point, so my paid leave was scarce. I had 5 days of vacation and 5 days of personal/sick time. problem was, I would be out at least 4 weeks, maybe more. The solution was to put in for a leave of absence, where at that point I would earn a portion of my pay. I should also say that I work for a mid size non profit, and its not extremely bureaucratic or formal all of the time, but obviously this had to be. I should also point out that my Deputy Director, also a Black woman, had several myomectomies and knew exactly what I was going through.  The fact that she understood what was happening to me and the recovery process was very comforting to me. It was easy for me to tell her what was happening. On the other hand, my manager, (who was awesome and I had a great working relationship with) was a man, so it was a bit more awkward explaining to him what kind of surgery it was, even in vague detail. I also had to present a note from the doctor to verify that I would be having surgery and would need time to recover/recuperate. Make sure you get all of the proper documentation from your doctor’s office

In the end, I worked out the 5 weeks using all the sick and vacation leave I had, then using leave of absence and a week working from home.

  • Read up and talk to your  HR department about your extended leave options and time off. Depending on the method of surgery, your time off could be 1-6 weeks.
  • If your job offers telecommuting, I suggest using this option for a week or two before you head back into the office. It gives you a chance to catch up on what you missed without getting too stressed out, and you can still lay or sit in a way that will be comfortable for you, make any follow up visits, and maybe get a nap in. You will need naps as you recover.

 

Insurance

Hopefully you’re going through this with at least some health insurance. If not, it can cost you. But just because you have insurance, it doesn’t mean they will cover everything. Call your insurance company and see what is covered exactly. Also call the hospital where you will have your surgery to see how they bill. See what you will be responsible for out of pocket, co pays or other fees. Particularly for the Anesthesiologist.

Believe it or not, the anesthesiologist is not always covered with the doctor. You would think they come as a package deal, like a cable/internet bundle but, wrong again!  The hospital often bills for the anesthesiologist separate. Speak with hospital billing and ask who/what practice they use and see if your insurance covers that individual/group of anesthesiologists, AND how they bill.

Fortunately for me, I had excellent health insurance and my surgery costs were covered. The rep I spoke to said I may have a $40 or $50 co pay the day of. Bless the Lord, I didn’t even have that. The hospital billed my insurance for the anesthesiologist in a way that their costs were also covered.  Won’t HE do it?!

Physical and Blood Work

Your doctor will probably have you to get a general physical from your Primary Care doctor just to verify that your are in general good health and OK to be put under anesthesia and have surgery. They will also request blood work, but that in my case had to only be done within a certain window leading up to surgery. I think it was 10-7 days. The doctor/lab performing these will send the information back to your doctor.

Support

This is probably the biggest thing to have in order: Who will help you while you recover? Again, depending on the method and your particular situation, you could be down for a while.

At the time, I lived in a 1 bedroom apartment. Its was a nice size for me, but all the people who wanted to come help and wanted to stay with me was the issue. Of course O would be around, but he didn’t need to stay, he lived close by. My Mom was coming, of course, and my Dad insisted on coming.  My parents are not together, but they get along, but I was still worried about awkwardness in close quarters. Neither of them was going to stay in a hotel  1)because neither of them had a bunch of extra money for a hotel 2) They both felt their 24 hr help was necessary.

My Mom stayed for about two weeks, my Dad only stayed the weekend, which was perfect. I had two couches and an air mattress, so I figured everyone would be OK for those few days.

House work

Its a small thing, but the last few days before your surgery, tidy up your apartment/house. You might not be able to for a while. Also, if you have people staying to help take care of you post surgery, hit up the grocery store so they have meals and snacks. Also, pick up soup, jello, crackers, cereal for yourself. Those are about the only things you’ll be up to eating the first few days.

Now that you’ve got your help lined up, your insurance coverage confirmed, your time off approved and your out of office responder is on.  You’ve prayed, you’ve shopped, you’ve done all of your last minute running around. Its the day before the surgery. They probably have you to…

Cleanse

…and not your palette! Also known as a “bowel prep”. Because they will be operating so close to your bowel and bladder, they prefer that they are as empty as possible. I’m not going to lie to you, it sounds  innocuous on paper when they give you the detailed instructions.  Just a little milk of magnesia, dulcolax and a liquid diet after 12 noon.  I had never been so wrong. In real life, its so, so much more.

Stomach Problems

You’ll start this all the day before your procedure.  If you can take off or work half a day, it would be wise. You can eat solid food for breakfast. I don’t suggest going to IHOP and ordering a last meal of a stack of pancakes, bacon and eggs. Trust me.  They usually suggest toast, cereal, yogurt, fruit. etc. I think I had toast, turkey bacon and orange juice.

At noon, you take a large dose of milk of magnesia. Now you’re only on water and clear liquid like jello or broth. Several hours later, you take another dose of MOM with 2 dulcolax (or similar) pills. I think you can see where this is headed….  It comes in waves and will last you well into the morning.

6-12 hours before surgery, you can’t even have water.

Now you’re insides are all clean and you’re ready to go in.

On the emotional side, I was pretty steady. I prayed very diligently about healing. I prayed for my doctor and his team every day the week of . No matter what your spiritual or religious beliefs are, this, I think is the most important prep work. Pray, meditate, read scriptures, whatever gets you closer to God and calms your spirit.  I wasn’t afraid at all. Maybe because I knew it had to be done. I also didn’t look at this as the major surgery that it is. I just kept saying  “Its not like I’m having open heart surgery or anything”  The truth is this is a major thing, even if it is fairly common. I was touched that so many people offered to help and support me. I felt loved, which is always a great feeling. I also think I was so distracted planning and prepping, I didn’t really have time to think about all that was going on, until the day of.

The Surgery-Part One: Making the Decision

I’m going to break this down in to parts because, it really does happen in parts: The decision, the prep work, the actual surgery, and  recovery. This would be the longest, most boring blog ever if I did it all at once. Plus, everyone loves a good cliff hanger. 😉

If you are anywhere in the myomectomy process, I hope these posts can be a guide for getting through and what to expect.

 

I went to my doctor for a consult after she had the opportunity to review the ultrasound images. I had fluid on my kidney, several fibroids all around my uterus, including one in the back of my uterus that “died” (the blood flow cut off), which is what caused my lower back pain. Basically, my uterus was like a big ol’ bag of marbles. Well, a small sack stuffed with marbles? She couldn’t say how long they’d been growing, since no other doctor had made me aware of them. She couldn’t tell me how fast they grew, for the same reason.  She spoke with me about my options: Just “wait and see” since they weren’t causing too many symptoms (mainly heavy bleeding), or get them removed. Since I wanted to have children, she didn’t recommend UAE. Her recommendation was to get them removed because I wanted to have children but mainly because of the fluid on my kidney. Her concern was that there could be issues with my kidneys that could become serious. Little did she know, I had pretty much made up my mind on day one that these suckers had to go. She did not have to convince me to have surgery.

After the ultrasound and the consult, my GYN referred me to a surgeon. My doctor is awesome, but doesn’t do any thing but examinations /basic gynecological services and tests. No baby delivery. No surgeries. Just exams. Which I guess other doctors in the area love, because she gives them a lot of referrals and a lot of business.

She referred me to a doctor who is one of the best in the field: Dr. M. He is tops in my region (Washington DC area), and known nationally. He also had a personal stamp of approval- a friend of mine’s girlfriend also had her surgery with this doctor earlier in the year. He thought the doctor was awesome, and Tim* is very picky. If he liked this doctor for his boo, I knew he was good. But even with T’s stamp of approval, I did my research, which I highly suggest. DO YOUR RESEARCH. Google. Ask anyone you might know personally in the medical field what they may know about the doctor. Ask people who have been  through this who they used. This person is going into your body with sharp instruments and basically has your life in his/her hands. Consult with more than one surgeon/OBGYN if you need to. Me, I want to know everything when I pick a doctor: What were other patients’ experiences? Where did they go to school?  Where did they do their residency? Have they written any papers? What certifications or specialties do they have? Do they like Chipoltle? I need to know.

 

At least the waiting room was nice....
At least the waiting room was nice….

Fortunately for me, I was sold on visit one. O and I went for the first in April. Dr M** was awesome:  he had Saturday hours, multiple locations, and his staff was friendly. The only downside was the wait. We did wait for a long time. However, I’ve just come to take this as part of the  deal of healthcare in America. Especially of you have a doctor who is good with a lot of patients. His staff  did the best they could….I guess

Yeah, right.
Yeah, right.

Here’s where he sold me: I had my records sent from my GYN….except, they never sent them. Womp. So I’m going in prepared to talk with this man in detail about whats on the ultrasound, and he didn’t even have them. BUT what he did, was based on my symptoms and the information I could give, he drew what my uterus looked like with the fibroids and could describe the symptoms I had but hadn’t said.  You sir, are magical. We agree, surgery to remedy this.

Another piece of advice: Bring questions. Write them down, use your phone or tablet note app, whatever, but bring all of your questions and ask them. Also, be prepared to take notes and write down the answers the doctor gives you.

O and I discussed surgery and my options over brunch at a diner. I called my mom and let her know what was going on, and asked if she wanted to come down. Of course she did. So that Monday, I called Dr. M’s office and set the surgery date: June 7, 2013

Next: Part Two: The Preparation

 

*His name is not Tim. I do not use any real names in this blog without permission

** Similarly, if you are interested in the Details for Dr M, please contact me.

HERstory-Coming Out of the Shadows to Tell Our Story

 

Art Work: Women of Soul by Glenn Daniels We are a Sisterhood as we go though this journey together.
Art Work: Women of Soul by Glenn Daniels
We are a Sisterhood as we go though this journey together.

 

Its encouraging to find now that I’m not alone. I’ve always known I’m not alone in fighting fibroids and infertility, but recently I’ve seen more Black women sharing their stories. The lack of discussion and transparency in the Black community inspired me to start this blog. I knew several women my age and older that have gone through this, but no one talked about it or used it as a testimony. Now I slowly see more and more Black women speaking up on this issue, and I love it!

Yesterday, I was inspired by a woman named Gessie Thompson. In the May issue of Essence magazine, she shares her story. I had the good fortune to hear her as a guest on a radio show as I drove home. She was so passionate, and so joyful and showed so much faith. Please read her story at Essence.com  here

 

Her story is my story. Even though I’m only one myomectomy, 2  HSGs, 3 ultrasounds, and  1 hysteroscopy in, this woman gives me hope. Even in this early part of my journey, I see the mountain that is ahead of me, and I get overwhelmed. It may sound crazy, but I’ve seen my baby. I know what the name will be. More importantly, I am open enough to understand that I may not give birth to my baby at the end of this journey, but I will have one. They will be loved, and healthy, and beautiful.  God promised this to me. That doesn’t make this journey any less frustrating, stressful or painful while I’m in it.

It’s easy to think that getting pregnant is just a matter of having sex on the right day at the right time (and often 😉 ).  But there are so many women, especially Black women, who have trouble conceiving usually because of uterine fibroids,  the damage they cause, and the subsequent surgery (or surgeries) to have them removed. There is a tremendous physical, emotional, and monetary cost to infertility that can potentially break you as a woman, break up your marriage, and stress your family. Many insurance plans do not cover IVF and other fertility treatments. There are some states, like New Jersey, Ohio, and Hawaii, that mandate  infertility treatments are covered under insurance plans, but there are only 15 states these types of  policy. This trouble with fibroids is real.  80% of percent of Black women will suffer with fibroids at some time in their life. Because fibroids are generally benign in regards to cancer, many people  do not understand how serious they can be. Fibroids can not only cause problems with fertility and menstrual cycles, but as they grow and the uterus expands and distorts, they can cause other problems with digestion, back pain, kidney, and bladder function. This problem is serious and we need to do more.

 

I am now more determined and inspired than ever to continue this blog and do even more to be an advocate and educate on fibroids and infertility.

 

In addition to Gessie Thompson’s story, Essence ran a wonderful education piece about fibroids:

Essence: Fighting Fibroids

To learn more about Gessie Thompson, her story, and the work she is doing (including a prayer circle. I love that idea!), please visit her website, www.whatsyournia.com

Please click here for a list of states that  currently have laws requiring insurance coverage for infertility treatment.