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Interview with an Endo Sister

In a recent interview with Katie from Juneau, one young woman reveals her courageous battle with endometriosis.  From diagnosis to difficult decisions about fertility, ‘Chelle Baxter has been through so much... read about how she managed to come out on top.

To start off, could you tell us a little bit about yourself (personal background, family, job, hobbies, etc.)?

I'm 34 years old and a freelance journalist and motivational speaker. I host an online talk show, "Coffee Talk With ‘Chelle," where I cover a variety of topics, including endometriosis and my life as a reunited adoptee. I am also working as a space museum hostess during the summer and possibly following school year. I enjoy staying busy and being involved in the community. After losing several family members last year, including my parents and an uncle, I attended a six weeks grief recovery support group in August 2008 and have been helping assist these same classes since November 2008. I enjoy helping others who may be going through life experiences I have had, including coping with loss. Also, I have given presentations to non-profit organizations regarding my life experience as a reunited adoptee and dealing with endometriosis. 

I was adopted as a baby and raised by two wonderful parents. They both taught high school students; my father taught English and my mother taught Journalism. Hence, it is no surprise that I have a passion for writing and public speaking. My parents were very involved in my upbringing. My father taught at my high school, my parents chaperoned my senior prom, and my father handed me my diploma on stage at high school graduation.

I received a B.A. in Public Relations from University of North Texas in May 2002. Although I graduated high school in 1992, I was in and out of college during that decade mostly due to health issues.

I have several different hobbies, including crocheting, music, movies, malls, amusement parks, museums, reading, and collecting monkey items. Some may not call it a hobby, but I also love to research.

You're clearly no stranger to endometriosis now, but did you know anything at all about endometriosis before you were diagnosed?

I honestly had never even heard of the word endometriosis before. First time I heard it was when my birth mom found me when I was 24 years old and she informed me she had it and was concerned of the possibility of me having it, too. I researched endometriosis on the Internet and read it about it for hours that same day.

When did you start experiencing endometriosis symptoms, and can you share with us what symptoms you were experiencing and how they affected your life at that time?

I experienced menstrual cycles that would last for about fourteen days beginning at age 14, and then by age 24 it had gotten to the point where I was having menstrual cycle for thirty consecutive days with only few days off in between. I almost fainted a few times. 

Endometriosis definitely affected my life as a teenager; I recall not having nearly as much energy as my peers due to severe menstrual cramps. Since I continuously was told by several different doctors that there was nothing they could do to help me (until I was officially diagnosed with endometriosis at age 24 – at which point it had already reached the worst stage), I coped with my health issue as best as a I could by taking Midol and resting in bed with pillows surrounding me.

During those 10 years between the onset of symptoms and your diagnosis, were you able to talk to anyone about what was going on, or did you keep it to yourself for the most part?

I spoke only to my parents, doctors, and a few close girlfriends of mine. I was embarrassed about it – and that's a main reason why nowadays I do not even hesitate to discuss the topic, as endometriosis affects so many women worldwide. If I can help even one of my "Endo Sisters," then all of my talking about it will be well worth it to me.

What are some of the ways that your symptoms interfered with your daily life (work, school, relationships/friendships)? How often did you have to make or change plans around your symptoms?

Symptoms interfered in all aspects of my life very often. I would miss classes in college sometimes and would even have to take a semester off sometimes due to the symptoms and surgeries. 

I have done well at my past jobs; however, the main issue I had was "attendance" due to endometriosis. I remember coming home in tears sometimes after having a conversation with my boss informing me that I am great employee other than attendance (due to endometriosis surgeries and symptoms I would miss work). I am doing a lot better now, luckily, but it was very frustrating during those times. I gave up going on trips with my college friends a few times, too.

These symptoms were impacting your life enough that you did see doctors to try to figure out what was causing you to be so sick. Clearly, since you went 10 years without being diagnosed, many of the doctors that you saw did not tell you that it might be endometriosis. What did they say when you described your symptoms? Did they give you any explanations or offer any treatments?

After of all those doctors and those years, not one offered a solution. They all told me I simply had a worst case of menstrual cycles and cramps. In my honest opinion, none of them ever seemed too concerned.

For you, meeting with your birth mother was instrumental to your long-awaited diagnosis. What was that experience like? How did it feel to find an answer through this reunion?

I had always prayed for my biological family ever since my adoptive parents told me I was adopted (they told me when I was in 3rd grade). I did believe it was possible I would be reunited one day, but unsure when – and my birth mother searched for me around same time I searched for her. She pursued the search a bit further and found me first. 

It is almost indescribable really when I think about that week – my biological mother found me and I received official diagnosis of endometriosis. My life changed forever in so many ways and all for the better.

When you did go in to the doctor for your official diagnosis, you mentioned that you were already at an advanced stage of endometriosis. How extensive was the endometriosis, and what treatments did you decide to try to manage such a severe case? Were any of the treatments effective in relieving pain or allowing you to resume a normal life?

Endometriosis had spread onto my ovaries, uterus, large and small intestines, as well as onto my bladder and much more. It had spread into many places of my body. My gynecologist had me first begin taking birth control pills and not long afterwards, I had my first laparotomy. And from there, I went through various treatments, including birth control pills, Depo Provera, Lupron shots, and several more laparotomies over the next five years. I would feel somewhat better for a while after each laparotomy, but then endometriosis continued to grow and I would eventually feel worse again after some time. All of the treatments were not enough to slow down the progression of my endometriosis for a very long time for me.

There have been a few people who have been by your side throughout your entire endometriosis experience. Tell us a little about these special people in your life. What has it been like to have that kind of unfaltering support?

My best friend of 20 years, Blake, has been there for me through almost the entire time since we met when we were 15 years old. My husband, David and I were college sweethearts, so he was there by my side during official diagnosis of endometriosis and treatments (as well as with me through my reunion with my biological family). 

Both Blake and David have been a wonderful support system for me.  I am very grateful for them both.

I understand that shortly after your engagement, your doctor told you that you needed to make a significant medical decision. What was that decision, and how did you decide what the best option for you was at that time?

Not long after I was engaged to David, I was advised by my gynecologist that I needed to make a decision whether or not to get pregnant or have a hysterectomy and I needed to decide within six months. This particular appointment occurred the day before our engagement photo session. When I informed David of this medical update, he was not surprised, as he had been by my side from the official diagnosis of endometriosis through the several years of treatments and surgeries I endured. We prayed about it and, ultimately, he told me he felt it was best for me to make the decision as he said I knew my body best. My instinct told me hysterectomy every time I contemplated upon my two major options. As I had been so ill for so long and was ready to for any type of relief, but also because I am adopted and had already thought about the idea of adoption when I was younger. So, in the end, it felt to me almost as if God helped make the decision for me that it was best to adopt whenever David and I are ready to increase our family. After my hysterectomy, my gynecologist visited me the next day in my hospital room. He sat down and we conversed for a while. He told me that he wanted me to know to not have any doubts as I'd made the right and best decision for myself, my health, my body as it turned out the pathology reports revealed everything had been ruined (my ovaries, uterus, fallopian tubes, etc.) – it was no surprise to me to say the least.

Please understand at the same time I say all of this that I do feel that each case is different and that each woman needs to make the decision herself for what she feels is best for her because only she knows her own body better than anyone else does. So, in one case, a woman may opt for pregnancy and another opt for hysterectomy and so on.

Was the hysterectomy successful in eliminating your pain?

Overall, I do believe the hysterectomy eliminated a lot of my pain. I no longer had to worry about ovarian cysts, for example, or the excruciating pain from severe cramps lasting 14 or more days of a menstrual cycle each month. No longer was I anemic, either.

I do still have some pains but not nearly as bad as before and now it's different issues, such as scar tissue.

You have undertaken a few personal projects to raise awareness about this disease. Do you mind telling us a bit about what you are doing?

I have written articles about endometriosis that have been posted in various publications, including the Endometriosis Research Center's newsletter several years ago. Also in recent years, I created an online Endometriosis support group on YouTube, as it's a popular website that allows me to reach out to my Endo Sisters all over the world. It is amazing to meet them and hear their stories and how the doctors help them in each country. I believe we can all learn from each other and perhaps eventually through sharing our knowledge, find a cure.

What advice or insight do you have for a woman who has, or suspects, endometriosis?

First and foremost, my advice is to always "trust your instinct." As each woman knows her body best, I think it is important for her to follow her intuition. I would recommend any woman that experiences pelvic pain or has problems with her menstrual cycle to ask her gynecologist about the possibility of endometriosis. Currently, surgery is the only way to definitively diagnose endometriosis, even though sonograms and MRI have been used to detect endometriosis in some cases. And this is why I feel so strongly about the genetic test being developed, as it is least invasive. I also suggest to any woman with endometriosis to join a local support group, if possible, as well as an online support group. This way, when she feels well enough to travel to the local meetings, she can and when she does not feel well enough, she has the online support group as well; so, either way, she has a support group there for her.

Follow these links to visit ‘Chelle’s online endometriosis communities:

Coffee Talk With ‘Chelle on BlogTalkRadio

Endo Sisters and Endometriosis groups on YouTube

If you’d like your story to be featured on EndtoEndo.com or in an upcoming Juneau Biosciences Newsletter, email us at mystory@juneaubiosciences.com.

“It is intriguing to me that many members of both my biological and adoptive families have endometriosis. Therefore, I truly appreciate all of what Juneau Biosciences does in their research for this disease.”

August 2009

‘Chelle Baxter (Fort Worth, TX)

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