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JENI’S JOURNEY WITH ENDOMETRIOSIS

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Endometriosis.

A very big word I struggled to even pronounce when I first heard of it.
It’s what my doctor told me I had.  How can I suffer from something I had never even heard of let alone pronounce. The textbook definition is,

“the development of uterine-lining tissue outside the uterus.” 

I’m Jeni, and this is my 2 and a half year journey battling endometriosis, infertility and all the emotions that go with it.

Let’s start at the beginning

August 5th 2013 I had a miscarriage. The doctors assured me that there was nothing wrong and that sometimes it just happens. I accepted that bad things really do happen to good people and I dusted myself off and carried on.

Finally after waiting a few months, I began to try again. It was after 6 unsuccessful months and abnormal health concerns that I decided it was time to visit with my doctor.

I was having issues like random pains and spotting. She told me that my body was probably still suffering from the loss of my baby. She gave me a prescription and sent me on my way. I did as the doctor asked with hopes that she was right.

Dealing with the same issues

Unfortunately, months had gone by and I was still having the same issues. I called my doctor and insisted I have an ultrasound, something just was not right.

What the ultrasound revealed was alarming. My left ovary was enlarged, to the point where it was larger than my uterus and it was full of cysts. I was immediately referred to a specialist who saw me immediately.  After being put on medication I was told to come back in 3 months to have another ultrasound.

Unfortunately, when the three months were up, the new ultrasound revealed the ovary was getting larger and the cysts were continuing to form.

In June of 2014 my right ovary was removed. Post surgery tests confirmed that I had endometrioses. Research states that even with one ovary I could still get pregnant so I was still very hopeful. I was determined to work on myself andnot give up. So of course, i started working out. I went to the gym practically every day and changed my eating habits. I gave up soda and lost 15lbs. I was feeling great.

Fast forward to the fall of 2015

I continued with my daily workouts and healthy eating but seemed to have plateaued.  I still had a little extra weight that I really wanted to lose.   Coincidentally,  I was suffering from some random pains again and severe bleeding which eventually lead me the ER.

An ultrasound revealed my worst nightmare… my left ovary was now enlarged and full of cysts.

After seeing a local OB/GYN I went to a new specialists who revealed I, once again had endometriosis. She then discussed my options with me.

MY OPTIONS

Option 1: Go on prescription medication that would hopefully keep the endometriosis from spreading. It’s not a sure thing and often times, surgery is inevitable if it has already progressed enough.
The only positive to this was that I would still have my other ovary and if the endometriosis didn’t spread I could discuss options with a fertility specialists on the possibility of carrying a baby without the endometriosis spreading, which she said was a long shot.

Option 2: She could try and do surgery to remove the endometriosis but she wouldn’t know how severe it was until she got in there, and even then she may have to remove the ovary anyway if it was too wide spread.

Option 3: Schedule the surgery knowing the ovary would be removed and not attempt to simply remove the endometriosis.

I didn’t like any of my options

Being on medication sounds like the best option, doesn’t it? But with that meant I would have to be on the medication for the rest of “child-bearing” years and if I wanted to attempt another pregnancy I would have to get off the meds but continue to be seen by a fertility specialist on a regular basis so if the endometriosis spread, we would know immediately.

What kind of life is that?

Taking medications for the rest of my life in the hopes of having a baby that I may never be able to have anyway. The emotional roller-coaster I was already on, told me that it was not my best option.  There was no guarantee that I would ever have a successful pregnancy.

I AM NOT GIVING UP

I didn’t want to give up on the idea of having a baby. For as long as I could remember, I’ve wanted to be a mom.  After giving it a lot of thought, talking to my doctor, friends, and family I came to the conclusion that removing the ovary was the best option for me.

February 5th 2016 I went in for surgery. I was scared, depressed, and angry. This was a life-changing surgery. This time the doctor removed the Fallopian tube and the ovary and then proceeded to remove any and all endometriosis she found elsewhere and boy was it elsewhere. I had endometriosis on my uterus, my bladder, my intestine, and my diaphragm. Post testing revealed it was Stage 4, which is the highest stage you can have.

My doctor told myself and my family she was so glad she did the surgery, medication never would have been able to remove all that.


“My life has been affected both physically and emotionally and I have my good days and my bad days. Some days I don’t let my disease and my struggles define me but other days, like a ton of bricks it all crashes down on me and I’m left feeling all the weight on my shoulders. I scream and I cry and I beg to have this not happen to me but it did happen to me it does happen to me every single day. I’ll never be “cured” and things will never be how they were before but I just have to remind myself that I can get thru this. I can be strong because it’s the only choice I have left”

– Jeni

LEARNING ABOUT MYSELF

I never considered myself a strong person, not physically or mentally. But going through all of this has taught me a lot about myself. My diagnosis has taught me to always push for answers, never let your doctor make you feel unsure and leave you with questions.

I wish I had been more persistent from the beginning, maybe my outcome would have been different and the endometriosis could have been kept under control. I’ve also learned that I am much stronger than I ever thought I was. I made a life-changing decision, it wasn’t easy; in fact it was probably the hardest decision I have ever had to make but when it all comes down to it my health is what is most important. I need to be healthy for myself, my friends, and my family.

A NEW FUTURE

With these health issues in my rear view mirror, I’m starting a whole new future. I’m a completely different person with a different aspect on life now. I’m back at the gym even though I am far from where I was physically or mentally when I had to quit working out, but I have goals and I’m determined to reach them. It’s a step by step process and I’m my own cheerleader.

I hope my story helps someone. I wish I had been more aware of endometriosis and its effects on my body before it was too late, but I’m right where I was meant to be.

For more information on symptoms and care go to  http://www.centerforendometriosiscare.com/

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