Adenomyosis, endometriosis, hysterectomy, Painful Periods

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

 

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Adenomyosis, endometriosis, hysterectomy, Painful Periods

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

Adenomyosis, endometriosis, hysterectomy, Painful Periods

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.

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Adenomyosis, endometriosis, hysterectomy, Painful Periods

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

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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