ENDOMETRIOSIS – How it changed my life (Part 1)

This story is going to begin sad. But, hang in there, because there is hope by the end. I love RVing and sharing my life with you, but Chris says that this story is the most important one for me to tell. And I agree. Because it is a lengthy story, I decided to break it up in to 2 parts.

Part 1

In 2012, I had two miscarriages. It was very dark times. So much so that I couldn’t even talk about it with my friends. Tears always came first. It took us a full year to become pregnant. After the first miscarriage, the doctor in the emergency room said, “Don’t worry, this happens more than you know. You will be pregnant again before you know it.” And we felt very hopeful. I knew several women who had a miscarriage first and then had healthy children. We really felt disappointed but full of hope. That changed with the second miscarriage. That miscarriage really ate away at our hope. It took years for me to be able to have a conversation about it and talk openly with others. I don’t want to dwell on it now, but it was devastating.

After those experiences, I began to have a lot of abdominal pain. I had always had painful periods, but all the doctors ever said was that it was normal. In college, they tried to put me on the pill for it; but I never felt right about that. As the years passed, Advil and other pain killers stopped working, but I just dealt with it. I would take off work or cancel plans and do the best that I could.

But after the miscarriages, it was considerably worse. Bad enough that I just couldn’t stand it. I decided to start tracking the pain, and I learned that in 30 days, I only had 2 days without pain. At times, it was so excruciating that I would be pacing our living room hunched over for hours in the middle of the night. That was a wake up call for me. So I went to a new Gynecologist. That was the first time any one mentioned Endometriosis to me. She relayed that the only way to actually diagnosis it would be to do a laparoscopy. So, I scheduled one at Hershey Medical Center with a surgeon who specialized in Endometriosis cases.

My laparoscopy was supposed to last 30 minutes. Boy was Chris surprised in the waiting room when it took over three hours. When the surgeon went to talk to Chris, he told him that he felt terribly for me, and that it was the worst case he had ever seen. You can imagine how that made Chris, who is a loving and supportive husband, feel.

Endometriosis is a disease in which endometrial cells that are supposed to form within the uterus actually form in other parts of the body, mainly the abdominal cavity, but they have been found just about everywhere. This is where the autoimmunity part comes in…in a healthy body, the immune system locates and removes these foreign cells. When the immune system does not remove these cells, and it is that time of the month for the body to shed these cells; they can not be shed. Instead, they create terrible inflammation and adhesions. In advanced stages (Stage 4) Endometriosis, these adhesions create scar tissue that binds up everything it touches. Your organs are meant to slide and glide as needed, but the scar tissue inhibits that motion. You can imagine the pain that that causes.

After the surgery, I learned that I had Stage 4 Endometriosis. I also learned I had a completely frozen pelvis, meaning that the scar tissue was so bad that everything in my abdomen was stuck together. The surgeon tried to remove as much as possible, but was unable to get the worst of it – my uterus was flipped backwards and completely attached to my colon. He said that in order to get that part, I would have to have another major surgery with multiple surgeons. I also learned that I probably had Endometriosis for over 10 years.

Post-surgery, I was in even more pain than before. I was so miserable. I was completely exhausted. I continually went to my doctor with new issues: my blood pressure was so low that I had to have a lot of heart tests done, I had gall bladder issues, I had vertigo (that was an interesting car ride just to get to the office), and the list went on and on. I was diagnosed with things, but doctors didn’t have any real help or reasoning. Instead, I was prescribed the standards – antibiotics, Nexium, etc. In the meantime, I could barely work a part-time job, Chris had to do everything around the house, and our daily lives became simply coping with all of my symptoms and pain. Every single day was a struggle.

By the time I went back to meet my surgeon for the post-surgery appointment, I also had shingles. My mom drove me to the appointment, because it was hard for me to drive with shingles. As we discussed my options with the surgeon, he stated that there is no cure for endometriosis. He also explained that there is still not much known about it. They don’t know why it occurs or how it happens. He recommended that I should go to an infertility clinic right away because they can “guarantee” a baby. After that, he wanted me to either have a full hysterectomy or go on medication that would put me in menopause (I was 32). I explained how sick I had been and how the pain had increased, and he said that that was not that surprising given my case. He said that removing the endometriosis does not always help. I also asked about diet, “Are there any changes I could make to my diet that would help?”  He stated, “No. I have one patient who said she switched to a paleo diet and her pain decreased, but I think that is all in her head.” My mom and I looked at each other, we said thank you, and we both left confidently knowing that that was the last time we would see my surgeon.

Now, I was left in the worse condition of my life,  with a disease with no cure and no one to help. I became consumed by research. I researched endometriosis, natural healing and everything in between. I am a certified teacher with a Masters of Science degree in Library Science. So, research came naturally to me.

I learned that even having a full hysterectomy would not stop the endometriosis. I learned about the problems women faced with hormone therapy after the hysterectomy. I also learned all about the side effects and problems women faced who had opted to take the medications to shut down their hormones (Lupron, etc.). I learned that some women are having laparoscopies every 6 months to try to deal with pain (which I learned can actually contribute to the endometriosis because it adds even more scar tissue). None of these options seemed right to me and each one came with serious complications.

I read hundreds of stories of women who are suffering so desperately that it is still hard for me to think about them. There are women who have lost their jobs, their husbands, their fertility and more all due to how endometriosis had ravaged their bodies. I read stories of how endometriosis was found on women’s lungs and in their brain tissue. It was terrifying. I thought I was healthy – I was an athlete, I had a trim body, I ate lots of vegetables – but here I was with an incurable disease and a daily struggle.

For that entire summer, my pain was so bad that I just could not function daily. With all the research I did, I knew that I needed something quickly to break me free of my situation. I wanted to embrace natural healing, but I felt that I needed a more serious intervention first. We decided to see one of the top Endometriosis surgeons in the world. Women with Endometriosis fly from all over the world for this surgeon. He is Japanese and a Christian. He also uses his personal skill to incise the endometriosis by hand and remove it, unlike my first procedure which used the newer technology of machines to burn away the endometriosis (which they tout as being much better, but that obviously was not my experience). Chris drove me in to downtown Manhattan for my visit. The cost was great, as this surgeon does not accept insurance (none of the good ones do). His fee was $20,000.00, and we had to pay it in full. We were so desperate for relief that we felt that we did not have a choice. We had saved diligently in our twenties so that I could be a stay-at-home mom, but now we had our savings and no baby. So, Chris and I decided to go for it. We took money out of our savings and headed to the hospital in Greenwich, CT for my second surgery.

Click Here to Read Part 2 Now!

1 comment on “ENDOMETRIOSIS – How it changed my life (Part 1)

  1. Wow, Jen! Thank you so much for sharing your story of healing. I can so relate to your journey because I have had PCOS most of my life and am currently dealing with Hashimotos Thyroiditis. I am following your same path of healing with some modifications. Your story and journey give me hope that with God’s help, I too can become a true overcomer.

    Once again, thank you. Your testimony has been truly life-changing for me. I cannot wait to read Part II!

    Also, so glad to hear that your father is doing much better. Continued prayers to you all.

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