Feel Good Fridays

Person walking on a downed tree through a forest

Hello my lovely readers! I hope you’re all doing well.

Today’s Feel Good Fridays is a selfish one: I found it for me. And I want to share it with you. May it strike a chord with you as it did me.

“She is of the strangest beauty and the darkest courage, and when she walks with intent the earth trembles beneath her feet.”
― Nicole Lyons, Hush

I had another ultrasound yesterday because of my pelvic pain and I’ve mixed emotions. I plan on blogging about what I’m going through after my doctor’s appointment that I have next Tuesday. In the meantime: have courage. In all things. I know that there is something amiss inside my body; the pain tells me as much. I’ve had five pelvic ultrasounds in the last 11 months. We’ve been monitoring cysts on both ovaries. My pain has been off-and-on during the last six of those months and getting progressively worse. In my October ultrasound, the cysts were found to be shrinking, which I thought odd because my pain was doing the opposite.

Yesterday’s ultrasound yielded results that supported my suspicions: something is definitely going on. And Tuesday I will talk with my doctor and surgeon, Dr. Mel Kurtulus, to discuss the report and a plan. And then I’ll update you!

Although I want to curl into a ball on the floor and cry, I won’t. Not yet. I need to mentally steel myself for Surgery No. 5 in six years. Even if it finds nothing amiss: I need to go in and make sure. And I need to be ready to watch my husband, mother, and best friends go through the anguish of another surgery with me. I know it’s hard on them, too.

I don’t despise the disease. It has brought me closer to each of you, introduced me to some incredibly strong people, and given me something to fight for. But moments like these are incredibly difficult.

So, stand tall, embrace that inward beauty you possess, and walk with intent. You’ve got this.

I’ve got this.

Sponsor Highlight: Natural Harmony Reproductive Health

Logo for Natural Harmony Reproductive Health

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Natural Harmony Reproductive Health.

Natural Harmony Reproductive Health is an integrative clinic dedicated to providing compassionate, integrative, expert reproductive healthcare. 

An endo warrior herself, Dr. Merritt Jones specializes in the integrative treatment of endometriosis, recognizing that while no two people’s stories are exactly alike, many endo warriors have faced a long and arduous road and have had to fight to be seen, heard, and properly cared for. She believes that people living with endo deserve better. 

Natural Harmony takes an integrative and multidisciplinary approach to the treatment of endo, offering functional medicine evaluation, acupuncture, nutrition therapy, herbal and supplemental therapy, lab testing and lifestyle support and more. The clinic will also happily work alongside patient’s other providers to provide truly integrative and collaborative care.

Not only is Dr. Merritt my as-needed acupuncturist, but she’s a wonderful friend and an incredible support to myself and others in the Endo Community. Her compassion, understanding, and drive to help others is endless.

Feel Good Fridays

black and silver pen on white paper

Good morning, Readers! And happy Friday!

We’re well on our way through February, already, and I hope that it is treating you well.

Today’s quote is to remind you; yes, you, that YOU can handle it. Whatever it is, I know you can. Need help? Ask for it. Afraid you can’t? You can.

“Knowledge is power: You hear it all the time but knowledge is not power. It’s only potential power. It only becomes power when we apply it and use it.

Somebody who reads a book and doesn’t apply it, they’re at no advantage over someone who’s illiterate.

None of it works unless YOU work. We have to do our part. If knowing is half the battle, action is the second half of the battle.”

― Jim Kwik

Specifically, this goes out to those battling to achieve the healthcare you need. Is your physician telling you your pain is all in your head? That you should try *this* treatment or *that*? Or that the treatment your requesting is subpar?

You know your body. You know your symptoms. You’ve done your research on your health and disease. Present that information to your physician an talk about it. Bring print-outs of studies that support your position. Don’t want to take a medication due to side-effects? Bring a print-out of the FDA’s Drug Database Adverse Side Effects search. Can’t enunciate where your pain is in your body? Keep track of it on a pain journal and print that out.

Arm yourself with tangible, hands-on evidence that you can bring with you. And if they still won’t help you? Look elsewhere.

Nearly every day I get emails from women (or their families) seeking proper care and how to fight for what they need.

Educate yourself, but more importantly, ADVOCATE for yourself. Push for the care you need. It’s out there. ❤

Have a wonderful weekend. And if you ever need to talk, I’m right here.

Love, Lisa

PS – to those who helped me recently push for what I needed as well, thank you.

The "Band-Aid Treatment Plan" Strikes Again

Bandaids crossing into an X

If you’ve followed my blog for a while, you may have already seen the entry about c-section scars developing lumps of Endometriosis. If you haven’t already read it, you can follow the link or just know there are a lot of women that develop a painful mass in or around their c-section scar that turns out to be Endometriosis. It’s not just limited to c-section scars, but those are mostly the reported instances of scar Endo. Most of the time, that lump is removed and the symptoms fade; recurrence seems rare.

An article hit my inbox this week that had me breathing heavy. I had to take a few days to calm down before I wrote today’s entry.

You’ve likely heard of Orilissa, aka Elagolix. It’s AbbVie’s newest “treatment” for Endometriosis symptoms that was approved by the FDA in mid-2018. Much like AbbVie’s Lupron Depot, Orilissa can only be taken for a limited time and may come with a whole slew of side effects. It doesn’t stop the disease from growing or spreading, but it may suppress the symptoms of Endometriosis. For a time…so many of us in the community refer to these drugs as “Band-aid drugs.” They mask symptoms, offer horrendous side effects, and offer no long-term solution for the disease.

Anyway, on with my point:

Authors of a January 27, 2020, study published in Sage Journals wrote that treating c-section scar Endometriosis with Elagolix (aka Orilissa) may be a viable option to avoid the “potential morbidity of surgical scar revision.” They state that further testing is needed to confirm the efficacy of the treatment.

Wait. What?

Rather than the relatively simple procedure of removing the lump of disease, they’re suggesting medicating with this GnRH antagonist to “treat” scar Endo. And the fact that it doesn’t involve surgery makes it a “very attractive potential option.” Attractive?

Here’s my beef with this:

  1. Elagolix/Orilissa doesn’t treat the disease, it suppresses the symptoms. Stop the drug and your symptoms may flood on back.
  2. The side effects can be intense:
    1. May cause liver issues
    2. May cause bone loss
    3. May cause depression and suicidal thoughts. One participant in the clinical trials committed suicide two days after she stopped treating with the pill. She was 44 years old, had treated for one month, and had no medical history or life stressors that would have been indicative of suicidal thoughts.
    4. May interact with hormonal birth control
    5. Some adverse reactions during clinical trials included appendicitis, abdominal pain, back pain, hot flashes, night sweats, nausea, decreased bone mass density, headache, insomnia, mood swings, depression, lack of a period, anxiety, joint pain, decreased libido, diarrhea, weight gain, dizziness, constipation, and irritability.
  3. Depending on the dose, it can only be taken up to six months or two years

So, rather than remove the suspected Endometriosis mass within the scar tissue, they’d prefer to medicate. MEDICATE.

Ugh!

What are your thoughts? Obviously, I’m still a little heated on the topic…

Resources:

Sage Journals (Abstract, Jan. 27, 2020) – Treatment of Scar Endometriosis with Elagolix

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research. Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

Pain Journal: January 2020

The first month of 2020 is already over! And I just realized I didn’t share my December pain journal! Whoops!!

So, January. I was lucky enough to start the first day of the new year with my period (I skipped having a period in December). AND then I had it again on January 25th. So, two for one! Yay!

My favorite part? No more discomfort near my belly button and staples! I don’t know if I’ve just gotten better about portion control and eating, or what, but I’m super excited about the lack of spread-out pain and discomfort that occurred in January.

The not so favorable news? Both on and off my period, I experienced pain on the lower left and lower right of my abdomen. Ovary pain? Cyst pain? Something-else pain? It was in the exact same spot both on and off my period. And when on the left, it was almost always accompanied with reciprocal lower back pain in the same location. But the good news? Naproxen made the pain manageable and no need for the newly-acquired Tramadol.

During my periods, I had some uterine cramping and the aforementioned left and ride-sided pain. The highest-intensity pain level was a about an 8 out of 10. I hate it when it’s above a 6…but again, Naproxen dropped those pain levels below a 6 and I avoided Tramadol.

On January 6, 2020, I had two crowns repairs, which meant temporary crowns for 2.5 weeks. During that time, I mostly drank dairy-based protein shakes. Dairy. Ugh. This experience confirmed that I need to stay away!!! Wait ’til you see my poo journal below!

And on January 24th, I received some very stress-inducing news. Upon hanging up the phone, I immediately had a pain flare that lasted several hours on my lower left side. It truly makes me believe there’s either Endo or a cyst or soooommething wrong on that side. And it further encourages me to schedule another surgery when I see my doctor tomorrow.

I’ve also started counting my calories, trying to eat healthier, and have begun a low-impact exercise routine (started the Walk On 21 Day program on 2/1/20). We’ll see how that affects my symptoms. If you’ve been following my journals, hopefully you notice a difference in the types of foods I’m eating and the amount of alcohol I’m consuming!

Ooooooh man. Januarys’ poo-catastrophe!!!! Are you ready? OMG.

See all that red? DIARRHEA! SO MUCH DIARRHEA! Between the beloved phenomenon known as PeriodShits, the dairy-induced liquid carnage, and catching some type of stomach bug, I feel like I had way more diarrhea than I had regular poos. But January is behind us. And I will soon forget the multiple trips to the bathroom and the steady stream of OMG. Whew.

Let’s see what February holds in store!

Do you track your pain, symptoms, and diet? If so, what platform do you use? Share in the comments below!