2nd Annual 5K and Fun Run 2018

With the tremendous success of last years 1st Annual 5k we are in looking forward to the success of this years 2nd Annual 5k for Endometriosis Awareness.

This event is being held to raise awareness for the Our Journey with an Incurable Disease Foundation and Endometriosis Awareness.  We look forward to your support and participation in our second 5k at Saddle River County Park.

Race course is through Saddle River County Park, Saddle Brook, NJ.

Grab some friends and coworkers and create a team for either the 5k Run or the One Mile Fun Run.  Shirts are guaranteed if you register by March 18, 2018.  First come, first serve after that and while supplies last.

REGISTER HERE

DONATE HERE

Looking to help sponsor the event, please email me at OurJourneyWAID@gmail.com

Looking to help the day of, please email me at OurJourneyWAID@gmail.com

As always, thank you for all your support

-Love,

Amy Montes de Oca

 

Our Journey 5k for Endometriosis Awareness

March 26th, 2016, Our Journey will be hosting its 1st Annual 5k and Fun Run. Money raised will help endometriosis patients see specialists, as well as go to endometriosis research. Finding a cure is of utmost importance. This disease affects 1 in 10 women. Endometriosis is the #1 cause of female infertility. Women are being told that cramps are normal, and some are even being told it is in their head. The issue is the education about endometriosis is not happening on the medical level. Raising awareness will help this disease become at the forefront of people’s minds. No one should have to suffer the way that endo sufferers do.

Please register to run/walk in the race and if you are unable to attend, please find it in yoiur hearts to make a donation and help make a stand for woman!

http://bit.ly/Endo2017

My story starts here

A week later

My Story Starts here and the follow up is here…

A week ago (7/21/16) I had a partial hysterectomy. I had my uterus, Fallopian tubes, and cervix removed. It was done by Dr Tamer Seckin co-founder of The Endometriosis Foundation of America. He is kind and smart and so knowledgable.

I had no complications and stayed over night and the nursing staff was tremendous. So very helpful.

While I was extremely emotionally the few days leading up to surgery because not only was I removing the chance to ever bear my own children, we also donated our remaining embryos to science that very same week. Talk about ripping off a band aid.

I awoke in recovery with one of my oldest friends hovering over me feeding ice chips. She drove 2 1/2 hours to see me for 20 minutes. I love you Rei!

Another moment of coming to were my parents waiting to see me, to them I asked “has Rey eaten yet”…. Typical always making sure the hubby is well fed.

Now being home since Friday. Today being a full week since surgery I am finally feeling more myself. Can you imagine 7 days after a hysterectomy I am feeling better! I’m sore and walk slow and have pain but nothing like the pain I have experienced my entire adulthood.

My friends and family and so many others, thank you for always being there for me. I cannot imagine not having such a wonderful support system.

The visits the flowers the food the calls, texts, messages. I’m humbled. Thank you so very much xoxo

I am still emotional yet stronger. I know my path is the one I belong on and by far the path I belong on with Rey. He is my everything.

“So I says, who needs a uterus anyways..”

If you are unaware of my struggle with this disease, please read the beginning of my story HERE.

Since my last blog about my journey, I have remained on constant Birth Control yet still have felt pain more so than ever. I felt as if my regular OBGYN, whom I love, gave up on me a little the last time I saw him. I was crying in his office as I normally do and he said the option he saw was hysterectomy. At 38 years old, that couldn’t be my path… it just couldn’t be.

I searched my support groups for answers. Sent my records to multiple Endometriosis specialists in the country. I received a call back from one place, in a 5 minute phone call after just reviewing my records, 1 of the doctors said to me he wanted to perform a         presacral neurectomy (PSN) procedure.  This is where a nerve is severed to stop transmitting the pain receptors or whatnot. Well, that didn’t seem to sit well with me. This doctor was ready to have me fly down to his office and do the procedure ASAP. All without physically seeing me or asking me what I was looking for. At the end he mentioned that sometimes with this procedure, you lose the ability to feel your bladder or bowel full. Oh wow, yeah “I’m right on top of that, Rose!” I think not! Luckily, Rey was in the car with me and heard the entire conversation and he was shocked by it as well.

I did some more research and decided to send records to another specialist in NY. This time, I got an email back from the doctor himself. It was short but to the point “I read your case. Britney from my office will assist you to see me. I will do my best to help you.” For some reason, this just made me happy. Knowing that this world renowned doctor was going to try his best and read my file in its entirety. So, with that I made my first appointment with him.

Rey doesn’t always go to my doctors appointments with me, but he is always there for my endometriosis specialists’ ones. I am so grateful for that. These appointments are harder sometimes.

In the beginning of April 2016, I had my first appointment. He reviewed my symptoms asked a few questions and did an exam. Since most of his patients come to him from outside the NYC metro areas, he has to act quickly for surgery procedures. Seeing that I am more local, he was relieved he had some time with me to get and MRI with and without contrast and to visit a Colorectal Surgeon just in case the endometriosis has attached to my bowel.

After going for these 2 appointments, I just went back May 4th to review the findings.

The MRI showed that I have a few fibroids, no major endometriomas, my uterus is retroverted and to the left, and that there is a main focus of adenomyosis. While I was diagnosed with adenomyosis in January of 2015 and I did realize the symptoms are very much similar to endometriosis, but my pain was actually coming for the adeno and not the endo.

Here we are again, at the crossroad that I have been at before. The doctor says “Let’s see if we can see if we can find the reported adeno”. In the exam room, the doctor touched on the spot where the adeno is and I almost jumped off the table. 2 solid days later and that pain is still reverberating.

We went back into the doctor’s office, he was pacing, looking at both Rey and myself. “Rey, Amy… the only thing to help you at this point is a hysterectomy” This was as hard for him to say as it was to hear. He wanted to help me, wanted to get me to be pain free as he has helped so many other women. However, with adeno a hysterectomy is really the only way for it to be treated permanently.  While there are some new findings for an Osada procedure, that will cut out the affected area and the doctors will rebuild the uterus… well something like that…

So looks like in June I will be giving the ole heave ho to my uterus. Even though it has caused me so much agony and sadness and sorrow and I could go on and on…. I am still attached to it. I still want to not lose a piece of me, a piece of my womanliness. The finality of losing the last hope of ever having my own children. It is not an easy pill to swallow. How could it be…

To avoid medical risks of heart attack, cancer and having to be placed on hormone replacement therapy we will not be removing my ovaries. Oh joy!

So I guess the path you think you should be on, is not always the path provided for you to take. There is a reason for all of this I am sure. A lesson for me to understand. As far as I know, my lesson is to share this experience. So women, like myself, or yourself, or for women in your life that may have this struggle…. Hopeful this will give you a little understanding, a little peak into another person’s life, a little time in someone else’s shoes. My lesson I have taken is to help you, help you help others… and to bring awareness to such a taboo area that has no place being taboo if it negatively impacts the life of the ones you love.

here is my power song that i listen in times like this… 

Thank you all for your unwavering support.

 

Love,

Amy

Channyn’s Endo Story

Channyn is a brave Endo sufferer that decided to share her story with us! Not only is she sharing her story, Channyn also blogs herself about Endometriosis here! Thank you for reaching out to me and sharing your story with us! #knowledgeispower ~ Amy 

My Endometriosis story began when I was eleven. However, I didn’t even hear of the word until I was twenty-one. I’m sharing my story to bring awareness to this disease. I try my best to be accurate in any medical information or statistics, but if I’m wrong with anything please let me know. Before I start, don’t let the topic of periods keep you from reading this. Yes, Endometriosis is a disease that involves the uterus. But it’s nothing to feel shy or embarrassed about.

What is Endometriosis (Endo for short)? It’s a disease where tissue called endometrium is found outside of the uterus. Basically, when a women who has a normal period bleeds it all flows out and all is well. However, with Endo the blood makes its way out of the uterus and starts to stick to other organs. So as you could imagine, it causes a lot of problems and a lot of pain.

In 2004 I was at a bible summer camp. I was eleven years old and woke up to some pretty awful cramps and bleeding. I knew enough to realize that my period had begun. I remember thinking about what I had learned during puberty classes at school. The nurse had mentioned that women experience cramps, but that Advil or Pamprin should help. So I just went to the camp nurse, but didn’t find much relief from whatever she gave me. Swimming time was nice because I found that it helped ease the cramps. I didn’t play much soccer that year, which was my favorite thing to do at camp. Instead I just read a lot and went swimming whenever the chance came up.

That’s my first recollection of the pain. However, I just shrugged it off as cramps everyone who has their period experience. When school started that year I remember visiting the nurse a lot whenever it was my time of month. I would be allowed to lay down in the back with a heating pad for thirty minutes and then was sent back to class. During this time other girls in my class started getting their periods and I couldn’t relate to what they were talking about. I remember saying once, “I can feel myself bleeding right now.” and then being told that I was being dramatic. What I was experiencing was Menorrhagia, which is so not normal for an eleven year-old (or anyone) to have. Anyways, all of these encounters could have been prevented if Endometriosis had been talked about during the dreaded Puberty talk at school. I have no idea why it’s still not talked about during those talks, but that really needs to change.

Things stayed the same until 7th grade. I was walking to my bus stop when I was hit with the sharpest pain. It kept getting worse while I was on the bus. The bumps from the ride were too much and I was crying. When I got to school I went straight to the nurses office. At first she just gave me some advil and a heating pad, but after an hour it had only gotten worse. That’s when she called an ambulance. When I was in the ER I found out that I was bursting five oh-so-lovely cysts. However, after the episode I was told that it’s common for women to have cysts and to see my general practitioner (GP) about it.

When I saw my GP she told me that I developed the cysts because I was depressed. So to prevent them from growing and bursting again I should go on anti-depressants. Being thirteen and trusting my doctor and mom I started taking Prozac. Which, turned me into a mess of a teenager.

Anyways, as you can imagine the Prozac did nothing to help stop my painful periods. I ended up in the emergency room a couple more times for bursting cysts, each time being told that it was normal. I missed a lot of school, even when I was in school. I failed gym. Twice. I just didn’t have the energy and whenever my period came I would be in too much pain to sit in class. There were two nurses at my high school: one that let me have the special dark room, a heating pad and an hour or two of rest. The second one would give me one of those Thermacare heating pads with the same comment every time, “I can only give you this once. They’re only meant for students to sample and then have their parents buy them more if they liked it.” and then sent me back to class. Sometime around this time I started to cut myself. In my then-mind, no one believed the pain that I was in. Every time I would go for help I was told that it was either normal or that I was making it up for attention. So I released all of my pain and frustrations by harming myself. It was a pain that I had control over. I am so happy to say that ultimately, it was Jesus who took control over me and my life. It was His grace that saved me from that (dare I say) period of my life.

When I was fifteen I finally decided to stop the Prozac. I was taking it to stop the cramps, and it wasn’t doing that at all. My GP was still telling me that I was just depressed, exaggerating my pain to get attention. I believed her until  I realized that the bad cramps and heavy bleeding wasn’t caused by me being sad. Something was wrong, but the ER docs and my GP didn’t seem to care too much. By that time I was going to Youth Group, I had stopped cutting and I had a job. Somewhere during that time I started to understand that I was my own advocate when it came to my health. Although, I still hadn’t found a doctor who would help me. So I started taking a heating pad with me on bad days without caring what people would think of me.

 

(Me in art class during my senior year. Wearing my portable heating pad proud.)

I did end up graduating on time. For my senior year I transferred to a Charter School. They took my credits differently than the high school did and were understanding when I didn’t feel well. Somewhere along the way I got a really bad ear infection, which turned into an infection of my Mastoid bone. I had to have surgery on my left ear when I was seventeen. While I was recovering from that surgery I was on pain medications, which in turn helped my cramps. It took around 6-8 months for me to fully recover from that surgery. Which honestly, was a nice break from the cramps.

Then I went on to college. This is when things started to get a lot worse for me physically, but it’s also when I started to really piece things together. I ended up in the ER countless times with bursting cysts and migraines. Because of this I talked to girls in the dorm about their periods, which is where I learned what a normal period should be like. I started going to a Chiropractor weekly, which helped with my hip, back and neck pains. Not so much with my monthly cramps.

During my second year at college things really went south fast. I was starting to be in pain all of the time, not just 1-2 weeks out of a month. The doctor that I was seeing sent me to a Gastrologist to get a bunch of tests done. I was then diagnosed with Gastroenteritis and was told that I just had to wait it out.

At this point, my then doctor knew my whole history of the cysts, painful periods, heavy flow, exhaustion and acne. However, it was all dismissed as a type of flu that I had to get over. I started to wonder though if all of these things were connected somehow.

The summer after my Freshman year and onward I was dating, and then became engaged to Sam. I would drive 2.5 hours to see him almost every weekend during the first semester of my sophomore year of college. His mom is a nurse and one time when I was visiting I had an awful period. She asked a lot of questions and was one of the first medical professionals to show an interest, and then show concern about the pain I was experiencing.

So right after Sam and I got married I found a new doctor and begged her to help me. After having an ultrasound done, she found something odd about my uterus. She told me that it was honestly above anything that she knew about. I have to say, I really appreciate and respect it when doctors are honest like that. She sent me to a Gynecologist, who I got into right away.

During my first appointment with him I heard the word Endometriosis. He told me that he strongly felt that I had it and I had two options: to start a birth control and see if that helps, or to have a Laparoscopic surgery (Lap) to diagnose, and if found, remove it. Since Sam and I had decided to start a family right away I chose to have the surgery, which ended up being my first Lap.

When I went in for my first Lap I was so scared. What if nothing was found? What do I do then? I remember waking up and immediately asking if he had found anything. I cried a lot when the nurse said yes. He had found Endometriosis. The cause to all of my pain.I thought that would be it. My suffering had a name and I would be properly helped from here on out. I was very, very wrong.

The surgeon had botched the Lap. Not only did he end up just taking a few samples of the Endo that he saw (instead of removing it all), he had also put the incisions in the wrong spots causing nerve damage. I was in more pain after surgery than I was before. Whenever I went back to him he told me that was impossible and eventually getting in to see him became difficult. Thankfully, Sam had gotten a job in Maryland. I had the surgery in November of 2013, and we moved to MD in February. I found an Endo specialist in Towson, MD and had my second Lap in April of 2014, just five months after the first.

It was during that surgery that my Endo doc found a lot of lesions and adhesions that was left behind previously. After I healed from that Lap I had around a month of being pain free. It could have been much longer if I had started a birth control, but we were still trying to get pregnant. So birth control was not option. So the Endo ended up coming back right away. I started seeing a Pain Management Specialist so I could be relatively comfortable.

During the summer of 2015 we started doing rounds of Clomid, two to be exact. I wasn’t told beforehand that Clomid is known to cause Endo to grow quickly, which is what ended up happening to me. The pain started being constant. I tried to quiet it down by taking a birth control called Aygestin, but when it didn’t help I called uncle. I couldn’t keep putting my body through all of this to become pregnant. So we’ve now decided to adopt! (woo!)

By November I was finally able to get into my Endo doc, where he said that he was following my case from afar and was expecting to see me soon. On December 2nd, 2015 I had my third Lap. I’ll find out my results from this Monday, 12/28/15. So this is where my Endometriosis story is at now.

At the moment that the first nurse told me yes, he had found Endometriosis, everything I had gone through since I was eleven was in fact real. I hadn’t made any of it up. With being diagnosed I’ve had to go through, and let go of, a lot of anger towards those who had ignored me. Now I’m just passionately angry to help others so they don’t have to go through what I did to become diagnosed.

So please, share my story, share your story. Or if you know someone who is going through painful periods, but have yet to find out why tell them about Endometriosis. If someone had told me when I was 11 I can’t even imagine what could have happened.

It took 9 years for me to become diagnosed. I pray everyday for young girls who are struggling that this won’t be their story. How can this be prevented? By doing something.

On my appointment on 12-28-15 I got a lot of pictures from my surgery. What I found most interesting is that my adhesion’s had matured enough to create their own blood supply:
BEFORE & AFTER:

Do something about Endometriosis. If you have Endo, do something. If you know someone who does, do something. There’s estimated 175 million women worldwide who suffer from this awful disease, yet there’s no cure. Not only is there no cure, but it usually takes around 10 years to be properly diagnosed. Even after being diagnosed women with Endo have to fight to actually be heard and helped. This could be prevented if those in the medical field were better trained in this disease, and also if it were taught about during the puberty talk in schools. There is so much that could be done. So let’s start with this: Just do something about Endometriosis!

Below are a ton of articles that I’ve found useful. Please feel free to contact me at channyn.hess@gmail.com if you would like to talk to someone about this disease. If you have any questions about Endo I will try my best to research and find an answer.

http://www.myendometriosisteam.com

http://www.endofound.org/endometriosis

http://www.theguardian.com/society/endometriosis

http://sexsiopa.ie/blogs/sex-siopa/54623492-living-with-endometriosis-an-interview-with-jeanne-sutton

http://www.graziadaily.co.uk/beauty/fitness-health/what-is-endometriosis-20150954418

http://www.prnewswire.com/news-releases/new-genetic-discoveries-in-endometriosis-300164855.html

Thank you for reading my story. I pray that it will help someone else.

 

Thank you for sharing your story with us! 

 

Please be sure to join the support group OUR Journey with An Incurable Disease

Amber’s Endo Story

In the last few days, Our Journey With an Incurable Disease has been blessed with new members.  I recently asked if anyone wanted to share their endometriosis story in our blog. Amber was quick to respond and send me an email of her life with #endometriosis. Amber is a strong woman to allow us into her private world and feel her pain. I appreciate you being an advocate for all of us, Amber.
#knowledgeispower
Thank you for sharing your story.  – Amy 

 

 

So my story starts when I was 9 years old, I know I know that’s early and I had no idea what was going on. It was a Saturday and my mom was at work, of course that leaves me at home with……. Dad, yep I woke up that morning feeling under the weather and sick to my stomach, I had diarrhea (sorry it happens) and my dad was sure I had the flu. I told him how bad my stomach hurt so he called my mom at work. She also thinks I must have the flu. So the afternoon rolls around and at this point I’m sure it was my 19th excursion to the bathroom but this time it was different and so wrong, I started crying and yelling for my dad (poor dad) he came to the door and I told him I was bleeding I thought maybe my guts had exploded (remember I was 9).  So after a quick questionnaire through the bathroom door he figures out what’s going on. He told me to stay put and called my mom. Yes I sat on the toilet for the next 20 minutes crying and waiting for my mom.

Fast forward a year to the next time I was about to have my period, after that I was like clockwork every 28 days I would cry with these horrible cramps and back pain and diarrhea. Unbearable pain a 10 year should not have to go through.

As the years past I would try things to help me through the pain, I actually missed so much school my 7th grade year I had to repeat the year……. All because of my period. Of course more time passed and as I was reaching my senior year of high school I noticed a change in my cycles, not a good change , I had my boyfriend now for about a year (who’s now my husband) I had to break the news to him, yep I thought I might be pregnant!!!!! I missed my period for two months I was young and scared and wasn’t about to fess up to my mom and dad that I had been having sex. So he and I went and bought a test……………. Negative (whew!!) ok now what??? Oh no worries I’m young and have no clue that something’s wrong with me, I start missing my periods regularly.  I just go about my daily business as if nothing’s wrong.

A year passes and I’m out of high school I’ve matured some and realize that something is wrong, I shouldn’t be missing my periods like this. I schedule an appointment to go see my OBGYN. I tell her all my problems and explain that I’ve been missing my cycle, so being the wonderful doctor she is, she sets me up to have a Transvaginal Ultrasound (internal sonogram). At this point we find out I have several very large cysts that need to be removed, we schedule surgery to remove the cysts. A few weeks later here we are having surgery. Little did I know my world was about turn upside-down!  I came to in the recovery room and I felt like my inside were on fire. So my doctor breaks it to me once I’m fully awake and delivers the outcome and heartbreaking news to me. She tells me of this horrible disease that I have and tells me I may never have children. Yes I’m only 19 and the news was devastating. But I already had a child in my life that I loved as much as life itself, since my husband already had a daughter when we met she was only 6 months old. I was depressed a little about the great possibility of not being able to have any of my own children but as you know time dragged on for me.

I moved on with life as much as I could always thinking of the infertility as just a part of my life. I started my Lupron Depot injections about 3 months after my surgery. I had one injection every month for the entire year, let me tell you the possible side effects were all there…. Ask my mom she says I was the biggest $&/@? that year. You name it as a side effects and I had it. I literally went through menopause and I wouldn’t wish it on my worst enemy. So finally about 4 months after my last injection I had started my cycle and it was weird??!!???!!! It lasted 3 days and it was pretty mild. I was happy with the results, and again life seemed to move along.

A few more years pass and I’m still having 3 day cycles. What’s this I hear??? Wedding bells? Yep I start planning a wedding and my world is all right. So my wedding is set for August 31st, so my mind is totally fixed on wedding so the end of July rolls around and my husband (boyfriend at the time) says to me ” um you never started your period” I’m thinking  hmm must be my nerves from all this wedding chaos. A few weeks later he makes me take a test…. Bam! Positive!!!??? Wait what? So yeah my world just pretty much stopped spinning, I felt sick instantly I felt tired and weak I fell asleep standing up at work leaning against a wall. I just didn’t feel right. I went to see my OBGYN as soon as she could get me in…. Yep still positive….they do some blood work and everything is confirmed. So like I said I just didn’t feel good. A few more weeks go by and wedding is nearing, I call my Dr and complain about how bad I feel, mind you all I’ve been through and I really don’t complain much. So she has me get some more blood work done. At this time it’s now the point of no return, the week of the wedding is hear and she calls me with my blood work results and says I need to come in for a sonogram. She schedules us to come see her Friday and I try to reschedule seeing as I’m getting married the day after that, no she won’t have that, and tells us to come in and tells me how urgent the issue is.  So we go get the sonogram done on Friday and have the results handed to us then, she says we’re fine, she just wanted to check me for an ectopic pregnancy. So she sends us on our way. We get married the next day and my new life begins.

A month passes and I still don’t feel well. I feel like I’m in a hazed over dream. I wake up one morning and my little world flips again. I felt it the moment I opened my eyes. I felt blank and empty my heart pounded it pounded so hard I could feel it breaking. I started bleeding that morning and I just wanted to die. Of course I didn’t I just picked up the pieces and moved along.  I was ok though because something took place with my body that I feared would never happen, I got pregnant and it was just the beginning.

So a year later I missed again after being on a normal cycle. I went to the dr and it was like I was a lab rat, my OBGYN watched me like a hawk she poked and prodded me. She made me take progesterone suppositories she poked me more gave me a strict diet. She was amazing and I felt amazing. I knew this was it, I knew this would work the way I wanted it to, and it did. 9 months later January 13, 2004 my life paused for a moment and I met Bean (Jillian). I fell in love and it was a familiar love it was a love I already knew, it was a mother’s love that I knew from Sara my step daughter.

Life was on track and so was my cycle for a while anyways, and then it wasn’t… My cycle got off and my body started changing, my periods became physically debilitating my ovaries felt as though they would rupture each month when I cycled. My back ached like never before. My legs cramped like they would fall off.  So one more time I missed a cycle and again I couldn’t believe it. Never trying never ever having protected sex of all the years I’ve been with my husband Brent and here I am again with this gift that would change my life once again.

Yep this was it June 13, 2006 I brought a new man into my life. Kenny came along and since we knew this was going to be a C-section we had also consented to have my tubal ligation.

(Side step from my story but still part of my story, I highly recommend Do not have your tubes tide, it has been almost 10 years since I had this done. At the time I weighed all the options and just knew this was right for me I signed papers I came to an agreement and understanding with my husband and we knew this was the choice we wanted…. To this day I struggle with the choice I made. I am human and made a mistake, your body is made to reproduce and I took that away from myself. I wish every day I hadn’t, I continually dream that I’m pregnant and wake up crying when I realize it just a dream, I wonder all the time if I hadn’t had the tubal if I would have been given any more precious gifts of life.) 

So we can fast forward to present day and after a long stretch of steady cycles my body has turned against me. Each month my cycle is worse than the previous, I cry and moan from the pain, my cramps are horrendous I can hardly remember being pain free. I’m just here, sometimes I feel fine and don’t think about any of it, and sometimes it’s the only thing I think about. I’ve known about my disease 18 years and I have never met anyone else who has it. I didn’t even know there was any kind up support groups or awareness groups until recently when I started following Lena Dunham on Facebook, and that is how I found this group (OUR Journey with an incurable disease). That’s my story. This is my life.

~ Amber Light

Join the support group Our Journey with an Incurable Disease