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 hysteroscopy. 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.

 

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.

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 .

In July of 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

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. Please do not abuse your pan medication, sis)

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. My family 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 the vittles.

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. Many pain meds (Percocet, Vicoden, etc.) can cause constipation when taken frequently, so softeners can be a great thing to help with your visits to the bathroom.

 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“, which I won’t name, but 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?