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Endometriosis Awareness: Meet Jessica Worthley

Endometriosis WeekBanner2016Welcome, readers, new and old!  The subject of endometriosis is near and dear (as in, costly and painful) to my heart… not to mention most of my abdomen.  As March 3-9 is Worldwide Endometriosis Awareness Week, I’m doing my part to shed light on the cause by featuring some women who also have faced this diagnosis.

JessicaWEndoToday, I’d like you to meet Jessica Worthley.  Besides featuring my interview with her, I’m also offering Tomato Pie readers my novel Don’t You Forget About Me at the low, low price of 99 cents for the duration of Endo Week.  But more on that in a bit.  First, let’s meet today’s guest!


Hi there, fellow endo-girl, and welcome to Will Write for Tomato Pie!  How about you take a moment to introduce yourself?   

My name is Jessica and I’m 28 years old. I was born and raised in a small town (<1500 people) in Iowa. I have been married to my husband Josh for just over two years and we recently welcomed our first child, Sebastian, in January! We live in a slightly larger town (<6200 people) within a half hour from where I grew up. I worked in the finance industry for eight years but am now enjoying my job as a stay at home mom.

When and how did you first discover that endometriosis is a part of your life?

My endometriosis went undiagnosed/misdiagnosed for many years. It wasn’t until I started charting with Creighton in 2013 that my then fiance mentioned my symptoms to my practitioner. She advised me to chart my PMS symptoms to better determine if it was in a normal range or not. At our next follow up she saw the 14+ days of symptoms and referred me to our local NaPro Medical Consultant. I worked with him for a couple of months but nothing seemed to help for a long period of time. It was then that he mentioned it sounded like I could have endometriosis and referred me to the Pope Paul VI Institute in Omaha. The referral was accepted and in July of 2014 I had a diagnostic laparoscopy. They found a ton of damage and decided that a second surgery would be needed. In August of 2014 they went in with the help of the DaVinci robot to remove all the areas.

Tell us about some of the ways endometriosis has impacted your life, health and relationships.   

When I was a teenager I remember having terrible periods. There were times I would lay on the ground in the fetal position crying because the ibuprofen/Tylenol/Midol was not alleviating the cramps. I would ask my mom if we could have the doctors remove my ovaries so I wouldn’t have to deal with the pain each month. After all, I could adopt if I wanted kids later on in life. I would constantly soak through pads in a short amount of time. When I was in junior high we went on a field trip to an amusement park. I brought supplies but apparently not enough as I ended up in my last pad and I soaked through it. A classmate asked what I sat in as I had a red patch on my jeans. She saw my embarrassed look and gave me her coat to wrap around my waist for the rest of the day to prevent others from pointing it out. In high school, I would get extremely light headed and the nurse would always comment how pale looking I was and would tell me to go home for the day. It got to the point where I ended up staying home every month for the first one or two days of my cycle. After high school, it started to affect my job. I would have to call in sick on some cycles still and then I started to have pains in my abdomen mid cycle. It was at this point that I started a multi month journey of doctors visits that eventually led to a colonoscopy and a misdiagnosis of irritable bowel syndrome when the colonoscopy didn’t find anything wrong.

What have been some of the treatments you’ve used, and how effective were they?  

The first treatment I was prescribed while in college was the birth control pill. Though because of a genetic mutation that increases my chance of blood clots I also had to start taking a baby aspirin to counter the increase associated with the pill. I was on this for a couple of months when I realized it wasn’t helping and in fact was making me feel worse. I figured this was just normal for me and decided to stop the pill and deal with it. Fast forward five years and my practitioner saying it wasn’t normal, my medical consultant started me on HCG injections post peak as I had low progesterone levels. It seemed to help a little but I was still experiencing painful cramps though the amount of days had decreased with the HCG. he then put me on a tranexamic acid for my heavy cycles. I was on this for a couple months but I was getting debilitating cramps at work as I was passing half dollar size clots. It was at this point he referred me to have the surgeries.

A murder mystery about… endometriosis? For real? For real!  And it’s only 99 cents through March 9, 2016!

 

Has your faith impacted what treatments you would accept?  In what ways?

My faith has impacted what treatments I would accept. When I was put on the pill, I knew it was OK since I wasn’t sexually active and it was for medical purposes and not contraconception purposes. However, when the first pill was not successful I would have been more prone to take the doctors suggestion and get the IUD placed had it not been for my faith. I knew eventually I would get married and wouldn’t want to be using birth control so, I didn’t want to choose a more permanent option like the IUD.

Have you found your Catholic faith to be a help or a hindrance in your relationship with your endometriosis treatment team?  How so?  

Had you asked me this year’s ago, I would have said hindrance since many doctors like to say birth control is your only option. However, now I see that my Catholic faith actually helped. If it wasn’t for my faith I would have settled with a treatment plan that just masked my symptoms and didn’t actually treat the underlying problems. If it wasn’t for my faith, I would have not felt the need to learn NFP which ultimately led me to my NaPro journey.

Imagine that a friend of yours has just been diagnosed with endometriosis and asks for your advice.  What would you tell her?  

I would recommend she see a NaPro doctor over a regular doctor as the techniques they use in surgery are far superior at removing the endometriosis as well as reducing the chances of it coming back in the same areas. They also listen to you and will keep trying to find the underlying cause and not just write a prescription to get you out of their office.


 

Thank you, Jessica, for sharing your story with us. I especially like how you said, “If it wasn’t for my faith I would have settled with a treatment plan that just masked my symptoms and didn’t actually treat the underlying problems.” I’ve found it to be true in my own life, and I’ve seen how true it seems to be across the board.

Readers, please comment to thank today’s guest!  Meanwhile, don’t you forget to get your copy of Don’t You Forget About Me at the low, low price of 99 cents for the duration of Endo Week.  Spread the word!

DYFAMmar16IG

Endometriosis Awareness: Meet Silver Pyanov

Endometriosis WeekBanner2016Welcome, readers, new and old!  The subject of endometriosis is near and dear (as in, costly and painful) to my heart… not to mention most of my abdomen.  As March 3-9 is Worldwide Endometriosis Awareness Week, I’m doing my part to shed light on the cause by featuring some women who also have faced this diagnosis.

SilverPyanovToday, I’d like you to meet Silver Pyanov.  Not only is Silver a fellow endomazing lady, her first name is so awesome that Echo & the Bunnymen wrote one of my favorite songs about her.  Not really, but that’s still a beautiful name.  She’s also an editor and contributor at BellyBelly and a doula and childbirth educator.

Besides featuring my interview with her, I’m also offering Tomato Pie readers my novel Don’t You Forget About Me at the low, low price of 99 cents for the duration of Endo Week.  But more on that in a bit.  First, let’s meet today’s guest!


 

Hi there, fellow endo-girl, and welcome to Will Write for Tomato Pie!  How about you take a moment to introduce yourself?   

I’m a wife and mother with four rambunctious boys.  I’ve been married to my wonderful husband for almost ten years. Our faith and ministry have always been important to us.

After having my oldest I fell into the birth world, and just supporting women in general. I started as a volunteer at a local crisis pregnancy center and over the years turned my love of supporting women into a career. I’ve been able to continue ministering to women as a volunteer in several ways while also supporting my family as a postpartum doula and writer.

When and how did you first discover that endometriosis is a part of your life?

I began having symptoms in Jr high and with each cycle my symptoms became worse. By 9th grade I began missing school monthly due to vomiting from pain every 10-20 minutes for 12-24 hours each cycle.

Unfortunately an ill informed doctor did an ultrasound and said all was normal so I assumed I didn’t have endometriosis. After having my oldest son I developed chronic pelvic pain. We assumed it was due to pregnancy and birth (despite having a completely unmedicated, problem-free vaginal birth). After a couple years of physical therapy, steroid injections, another baby and then a miscarriage, my pelvic specialist said I had to have endometriosis. She said they treated me for every other possible cause of pelvic pain, added in my miscarriage and difficulty conceiving following that loss and she was certain.

I was referred to a reproductive endocrinologist and had a diagnostic laparoscopy. He removed unidentifiable scar tissue from my intestines and burned a few endometriosis adhesions.

Tell us about some of the ways endometriosis has impacted your life, health and relationships.   

I definitely entered womanhood hating my body and not understanding the pain. I thought I was a whimp. Vicodin and antinausea medication and I was still too sick to function during my period. I worried I’d never be able to handle childbirth. Just to give an idea of how bad endometriosis cramps can be, I’ve had four unmedicated, out of hospital births that were less painful than my menstrual cramps. I was pleasantly surprised in my first labor though there was pain, when I had myt first real contraction I thought, “I can TOTALLY do this! I’ve done this for years.”

My overall health has suffered mostly due to fatigue. Breastfeeding suppressed my cycles and no one could understand how I had TONS of energy as a sleep deprived mother of a three month. Then months later cycles returned and I had days I could barely function due to the fatigue. My constant use of NSAIDs in high school also caused an esophageal ulcer. If I get heartburn I can still feel the exact spot, though it’s been pretty much healed. I can’t know for sure, but I do believe it’s played a role in my two miscarriages.

It has without a doubt impacted my marriage. I’m incredibly fortunate to be married to a very patient, loving and genuinely Christ-like man, but he’s still human. We’ve had months in our marriage where I was unable to keep up with the home, errands, cooking, etc and so it’s fallen on him. We’ve also had stretches where intercourse just wasn’t physically possible. No matter how solid your marriage, it’s a definite struggle.

Even socializing in general, there are times I’m just too tired to hang out.

What have been some of the treatments you’ve used, and how effective were they?  

The first thing I was told was to try NSAIDs. It provided little relief and after a couple years I had severe GERD and would vomit blood. Then it was vicodin and anti nausea meds. They didn’t offer relief where I could function. They essentially knocked me out. I ended up sleeping 20 hours straight one cycle.

By 17, the same doctors that told me it was normal pain, also said they could no longer offer pain medication and my only option was the pill. I was hesitant, but took it. It helped a lot, but it doesn’t actually treat endometriosis. By its very function it’s an endocrine disruptor. So while it temporarily relieves symptoms it doesn’t solve the issue and can potentially cause more hormonal or fertility issues in the future.

After the birth of my oldest I developed chronic pelvic pain. After all of my births I had incredibly heavy postpartum bleeding and horrific cramping. My last, the cramps were worse than labor itself and lasted days. I was treated with steroid injections and pelvic physical therapy. Both worked extremely well, but were more maintenance solutions helping you to cope rather than healing.

I had a traditional laparoscopy and that helped a lot. My chronic pelvic pain is now intermittent and bearable. But, I’ve also been pregnant or breastfeeding since the procedure and both suppress endometriosis symptoms. To be honest, breastfeeding has been my absolute best “treatment.” Interestingly, I’ve only had fertility issues upon weaning while I conceived easily and without miscarriage while nursing frequently.

I’m set to start more NaPro treatment, hcg or progesterone first and then if needed another laparoscopy. I’ve heard great things and am looking forward to seeing how it helps.

A murder mystery about… endometriosis? For real? For real!  And it’s only 99 cents through March 9, 2016!

Has your faith impacted what treatments you would accept?  In what ways?

Definitely. I have a lot of hesitation using hormonal contraception, especially progesterone only as it can act as an abortifacient. I’m not 100% sure how I feel about it, I just know it makes me uncomfortable so I haven’t used it since I’ve been married.

Have you found your faith to be a help or a hindrance in your relationship with your endometriosis treatment team?  How so?  

Well I’m not Catholic, I’m nondenominational Christian, but I can align with Catholicism when it comes to certain areas of contraception. I don’t feel right using the Pill, though I wish I did because the temporary relief is appealing.

Imagine that a friend of yours has just been diagnosed with endometriosis and asks for your advice.  What would you tell her?  

Find a doctor that actually understands endometriosis. There’s SO much misinformation surrounding it, even among medical professionals. It’s also probably a safe bet to stick with a NaPro provider, as the basis of NaPro seems to have a better understanding of endo than most other schools of thought.

Also, understand that endometriosis can be treated, and quite well, but for many women it is something you’ll have to chronically treat and be aware of. Be kind to yourself and know that NONE of your symptoms, physical or emotional, are in your head. You have a real medical condition and you deserve treatment.


Thank you, Silver, for sharing your experience, courage and honesty with us.  Readers, please comment to thank today’s guest!  Meanwhile, don’t you forget to get your copy of Don’t You Forget About Me at the low, low price of 99 cents for the duration of Endo Week.  Spread the word!

DYFAMmar16IG