the long and not-so short of the endo

I was going over my blog the other day, looking back at post from years passed and realized that some of my posts chronicled various aspects and experiences of this insidious disease but realized I lacked a timeline which just gives a timeframe to my process of diagnosing and what procedures/treatments/surgeries I've tried at various times.

If you google 'endometriosis' this is the single sentence definition that is offered:

A disorder in which tissue that normally lines the uterus grows outside the uterus.

That statement makes it sound like something so insignificant and it has helped spur my mission of awareness of the disease AND what it does to the women who have it.  The following pictures are from one of my actual surgeries, showing both endometriosis and adhesions- which often go hand-in-hand.

1983- BORN

1996- Menstruation and endometriosis symptoms began.  Initially and for several years I only had problems every other month. But it was always intense- made several hospital trips with out of control pain,  nausea,  bleeding, etc- continued for years at this rate.

2005- 22 years old- begins increasing not only in severity but in frequency of symptoms to every month and frequently lasting longer than a week,  thus it began impacting my attendance with both work and school. Pain really became much harder to deal with and more intense.  This pushed me to find a cause.  Doctors initially began giving me all types of tests: colonoscopy,  endoscopy, barium xrays,  ct scans,  ultrasound,  and nothing was ever found. I feel like I was completely written off,  told that I needed counseling and an antidepressant. 

2007-2009- Began graduate school and was working at my first career-ish jobs.  My attendance began to suffer greatly due to unbearable pain and nausea and it was still due to an unknown cause.  This negative impact on significant parts of my life re-energized my determination to find out what was wrong. 

2009-2010- I changed my primary care physician and my life forever changed- in ways I could have no way of imagining. When I first met my doctor she was astonished that with all of the gi tests I had done,  not to mention the amount of radiation I had undergonewith those tests,  the number of medications I was on, was all while not having a diagnosis!  She did an exam,  listened to me and said I might be suffering from something called ENDOMETRIOSIS.  I had no idea what that meant or how it would impact my life. 

Once I had that word,  I felt life I had something to hold onto. It was gynecologist after gynecologist to no avail,  thus I received a referral to Cedars to have my first laparoscopy surgery to diagnosis the disease, or to rule it out. I had the lap done and was officially diagnosed with endometriosis and adhesions.  The surgeon did a uterine ablation. This was on Saint Patrick's day 2010, a day I will never forget. I still had hope at that time and did feel good for a few months post-operatively.

2010-2012 I experienced a few month-long reprieve following the ablation, I'd say 2-3 months. At this point I really had a limited knowledge about this disease and this early in my experience receiving specific medical care,  I STILL believed and believed IN doctors.  I believed that they would a) know about my disease, b) give me,  the patient,  my true options,  and c) guiding me to help make the best decisions regarding treatment...little did I know. 

Somewhere,  unfortunately I do not recall where or how, I heard that a hysterectomy could be helpful in providing a relief from symptoms.  It became my mission and I was determined like never before to have a hysterectomy.  Surgeons however are generally not itching to give 28 year old women hysterectomies. I understand how big of a decision it is but they didn't understand what I was going through physically,  emotionally,  mentally,  spiritually,  while suffering with the endometriosis which was becoming worse and worse day by day. 

I was getting to the place where I felt I could no longer handle it,  in more ways than one.  I was sure that I had made the decision that was right for me.  I've never wanted children,  and I couldn't sacrifice my entire current life, which is what helps build our future,  for a thing that I have never wanted,  and only slightly MIGHT want someday. No doctor that I had seen could seem to hear that and understand how much and how deeply I meant it.  I was really experiencing, if anything in reality I was downplaying my suffering,  NOT exaggerating it. 

In the spring of 2012 I finally found MY doctor.  He listened to me,  I had even brought my mom as my witness to help me prove my case,  thinking maybe he would listen more.  He did.  He said he would do the surgery. I don't think words can express the excitement and anticipatory relief I could feel. I could see myself having a life. 

A week later I had my surgery,  a vaginal hysterectomy.  The recovery was the easiest (this was my 2nd surgery of 5) of all my surgeries because I had no external incisions to deal with.  I felt incredible,  better than I had in years and years. I was able to live my life, and boy did I. I had 18 great months.  

2013-2014 unfortunately 18 months later each and every symptom embed up returning,  and with a vengeance,  just as bad,  of not worse than before my surgery. I was devastated.  Emotionally I was at one of my lowest times in my life.  I didn't know what to do.  I went back to my diagnostic surgeon and he essentially forced me to go back onto a treatment I didn't want to use.  I had one injection in January 2014 and over the next 6 months I was hospitalized, only including admissions and not just er trips,  6 times,  staying sometimes as long as a week.  Due to the treatment I underwent I was diagnosed with a drug-related hepatitis.  I also had to have a cholecystectomy and because I had no gallstones or any infection,  only pain,  and because I later learned that I had disease on my liver,  ribs and lungs-practically every organ in my abdominal cavity,  I believe my cholecystectomy was endo-related. 

I was informed of a specialist surgeon. I somewhat desperately contacted him and arranged to have surgery, that I seriously thought and was led to believe would be my most complicated,  but even more importantly my LAST surgery. I had my operation and found disease and/or adhesions on my liver,  ribs,  appendix  (which was removed),  bladder,  intestines/colon,  rectovaginal septum,  kidney,  uteters,  vaginal cuff,  ovary,  and had an overall very extensive and complicated surgery.  The recovery was rough, long and very, very hard.  Emotionally I had begun to let go of endometriosis, as I truly believed this was my miracle!

2014-2015- Devastatingly, including my excision surgery recovery,  I only had a 5-6 month long reprieve.  What a disappointment to pay CASH,  see a specialist to only have 5 or 6 months of feeling good,  which included my rocky recovery of about 3 months. This is something I am still somewhat reeling from emotionally. I found an amazing robotic specialist surgeon within one of the most renowned medical and educational conglomerations in our country.  He performed am oopherectomy and lysis of adhesions and yet further excision of endometriosis.  Unfortunately when I contacted my prior surgeon for assistance and guidance with this latest relapse,  he responded with touting that I couldn't have endo because he had performed my surgery and said I needed to see a dietician and to seek counseling (coming from another physician I had entrusted my past experiences), a complete dismisal of what I was going through and how bad it was,  and how similar it is to what I was experiencing before my surgery with him in 2014. His disrespectful response and lack of compassion are what steered me toward finding a new specialist surgeon.

At Present- I find myself in a quandary. I have no female reproductive organs left,  I've had 5 surgeries for this disease in the last 5 1/2 years.  Emotionally now I'm just wrecked.  I truly thought this was going to be over. I'm not suicidal per say, it's more accurate to say I'm just exhausted,  on another level exhausted.  So tired it hurts.  I don't know what to do.  It seems to feel like life has been fight after fight after fight, and for what?  That I don't know.  At my age it is very difficult to live and cope without being able to have any momentum to go forward and onward in my life. I feel like I cannot catch my footing,  so to speak,  in my own body,  much less my life. It is very discouraging to see these specialists and to not experience long-standing relief after such extensive, well done operations and countless treatments.  Why am I not getting better?  Why can't I have a life?  I see girls that have successful treatments and though the disease never goes away, they are able to live and even enjoy their lives.  I hate to admit this,  but I'm jealous.  

This post ended up being a little long but I am just trying to express how deeply and significantly this whole nearly 20 years long journey with this devastating,  all but fatal,  disease. In short,  yea right lol,  I just don't know what to do or how to exist in this emotional place.  It has been quite a journey and I'm trying to hold onto hope,  though to be honest sometimes in trying to find hope.  20 years is a very long time.  I have found it both a powerful and cathartic process to use my writing in this arena.  I can only hope that it helps to raise awareness about endo and destigmatize the women that have it further to help my sisters to remember they are not alone in this fight.

Thank you so much for taking the time to read this.  Sending thoughts of health, peace and healing to each of my readers and my sisters.

                                    signing off in love ॐnamastéॐ

Stephanie

                   

                                                      

finding balance in endo

I took a few days away this week to go up to my house up in the mountains. Desperately needed some alone time to recover further, reflect and just exist while soaking up the beautiful nature I love so much of the mountains!

I did some adventurous things like a hike, my first post-opertative hike at that and tried my very first try at stand up paddle boarding. It was a beautiful time out on the water!

Here I am on my hike. We did maybe 1.5 miles.
It felt great but I had to take my time.

YAY!!! I DID IT!!!!! I didn't fall in at all! It
was hard but so so so fun!

Took a quick selfie before I took off from the dock!

My few days away definitely accomplished my goals; however that is not to say that I wasn't in excruciating pain at some times, and having some level of pain at almost all times. Luckily I had packed all of my crystals, essential oils, incense and medications to try to keep in under control.

This crystal is green calcite, for healing and new birth

If you've been keeping up with my blog you may have read my post called What Else?, Part One. That post has some things in it that are important to understand before I continue with my explanation of an important epiphany that I'd like to share. So I'll share a brief statement of that blog post:

Whatever struggles you're experiencing may feel or seem overwhelming, I feel that way sometimes with what I'm going through. But the current mantra I'm working with is "what else is true?" So I am learning to be able to lift up out of my pain, which is very real, and see something else that is also very real but more positive. For example on this morning of Independence Day, I am in a lot of pain while writing this, BUT what else true?! What else is true is, I am in the beautiful mountains with people I love, I am going to be going to a firework show tonight and I know it will be amazing, I am able to revel in and deeply breathe in the healing properties of nature. 

With my amazing therapist I am working on this concept nearly constantly as I have been in so much physical and emotional pain that it has become nearly overwhelming. While it is a very helpful technique, sometimes I find it nearly impossible to utilize. Why, I began asking myself. And after some thought, reflection, meditation it finally came to me. I'm still working on how to express it as accurately as I can but here goes:

So with endo in particular you have to fight fight fight like nothing else to prove to the doctor that something isn't right, fight not to be mistreated or ignored- and that includes friends, family not only medical professionals, since people do not understand the disease or the amount of suffering that it causes, you have to fight to have the right, so to speak, to not feel well.  I don't know if that makes any sense.  So even though the disease isn't something we want, we have to hold onto it.  It feels scary to follow my mantra of "what else" sometimes.  That doesn't mean I don't want to use it.  I do it when I can, using the what else is true really, really helps.  Sometimes the pain feels too overwhelming and I just don't think of it. But I think my occasional shying away from that technique is much deeper than that.

You know that syndrome that people get after being held hostage and they begin to sympathize with their captors?  That is kind of what this feels like. Because of the legitimate hell I've gone through with this disease, the 5 surgeries I've had, the friends and jobs I've lost due to this disease, there is some type of strange emotional response regarding this disease and how it impacts my life.  This is where it begins to splinter into being even more complicated aspects of how this impacts me. This is hard, but I'm going to try to explain my deepest feelings in this regard. 

First let me say that this is a process and I'm definitely not far along in it but I am able to reflect in on myself and discover these things, when I allow myself.

So one thing I have noticed in this process is how much guilt/shame/blame I have in regards to my disease.  I am the kind of person who completely over apologizes and takes everything personally and I can somehow blame myself for anything. And am quite skilled at beating myself up. I am working on this but this is the internal tape I've played in my life for most of my life, so that isn't an instant process. However, I have a feeling that this blaming myself and having such a cloak of shame around my initially having endometriosis and then again, more intensely with each relapse I've experienced following each surgery.

Another issue that this disease has stirred within me is a sense of near hopelessness. It isn't that I don't want to have hope, but I've had such devastating experiences with hope and having it broken for so many years with countess medications, even more doctors and even surgeries!! I feel like I can no longer afford the severe cost of hope. I am struggling with finding a balance between hope and being realistic; this is a real current issue in my life, as I am seven weeks out from another surgery that I thought would be "it" for me, and alas it has not been. I do believe this might have been the best surgery I've had, and had it done by a super meticulous and experienced robotic surgeon; however, now we fear the disease is somewhere he wouldn't have had access or even knowledge of it existing during my procedure- so it feels never ending. This was another time where I lost a lot of hope, while losing my last female reproductive organs at the same time (ovaries).

Because of how hard I had to fight for my diagnosis and even for adequate, respectful, knowledgeable medical care, it is hard to put my weapons, so to speak, down. It is like I had to be on constant guard and ready to "prove" to physicians what was going on. I do not believe this is how the medical system should work. I had repulsive things said to me over the years from doctors: I've been told my problem was that I wiped too hard when I go to the bathroom, I've had a surgeon tell me that I didn't have anymore endometriosis and I needed to see a dietician-- both of these experiences are a complete dismissals of my experience. In someways I feel like I have to stay very vigilant in order to have any relief or options given to me. Its almost like I feel like if I let go a little bit of it, or ease up it will get worse and I will not get the treatment options that I need. This disease, more than many others, you have to truly be a very educated, strong, determined advocate for yourself or you'll get completely ignored and mistreated. 

With how hard I had to fight to get diagnosed It is almost hard to let go of, or hard to get it out of my immediate thinking part of myself. I have a feeling that this is something that can only be understood when you've been there also.  I also have a feeling that part two of this post will be up in the coming days! 

Signing off in peace and love,

♡ stephanie ॐ 

Ice Breakers and an Intro to BRAVE healing, nearly 4 years late!

I was reflecting over past blogs and realized that I should have a fun kind of blog. So I decided an Ice Breaker type post might be fun, obviously if you're a reader, you know a lot about my endometriosis experience, but not much else. Found some fun questions, so here goes!

What is your earliest memory?

         Picking out my cat at 4 years old.

Name 1 thing you miss about being a kid.

         Having things less physically painful

What was your favorite musical group when you were in Junior High?

         No Doubt, for sure, lol ;)

When you were a kid, what did you want to be when you grew up?

          I changed my interests several times, marine biologist, lawyer, teacher.

What was your favorite childhood injury?

         My favorite injury happened just five years ago, so I was already 26 lol, I fell off the curb of my house and broke my leg in half -- resulted in two surgeries and four months of not walking, fun fun.

When was the first time that you had beer?

          I was like 8 and took it accidentally from the table while sitting with my dad, I spit it right  out.

Do you have any hidden talents?

          Hmmmmm, I don't think so.....

What jobs do your parents do?

          Both of my parents taught elementary school, my mom taught kindergarten, and my dad, second grade.

Name one thing that not many people know about you.

           Hmmm I guess with a very personal written and now even video blog on YouTube, people would probably not think I am as shy as I am!

Was there ever a time when you were frightened for your life?

           More than I can count and for even more reasons!

What outdoor activities do you like to do?

           Camping, hiking, SWIMMING (Jamie that was for you!), road trips, zip-line

Where is your most favorite place on this earth?

            Oh gosh I guess I'm between Spain, this tiny village in Italy and Capri, Italy.

What do you consider your greatest achievement?

          I guess I would consider it to be my accomplishing my Master's Degree in Gerontology and to have my 3rd degree Reiki certification.

Do you have any phobias?

          FISH!

Do you feel you have a purpose or calling in life?

          Geriatric counseling/mental health

Do you believe in ghosts?

          YES, but they make me nervous.

What do you value most in life?

          L O V E

What would be your dream job?

          Running a retreat center/support group/etc focused on helping young woman with endometriosis!

What is important to you right now?

          Right now regaining my health is definitely most important in my life.

Just thought this might be a fun  post. Tomorrow morning I am returning home from my few days away. Right now I am in excruciating pain and am looking forward to returning to my baby tomorrow.  Tomorrow I think I will do a post about this trip!

Tips for Getting Away (with endo)

Living life with endometriosis is hard, in each way: physically, emotionally, spiritually, etc. Everyone deserves to get away every so often, and with a disease such as endometriosis that need for relief can be even more significant. However, the thought of a vacation, no matter how simple, can seem daunting. 

Peace out! ;)

This morning, while experiencing significant physical pain I decided to get away for a few days. That in no way means that I am "better" or "healed", it simply means I needed to get away and I used determination to get away. And I feel it is soooo important to be able to do this, even when it feels impossible, so I figured I would share some tips I feel help me to be able to get away.

Tip #1: Don't forget to bring your medications. Now along with my standard rx medications, I also find equally important my vitamins, crystals, incense and essential oils, so I make sure to bring those all with me; anything I use at home. One time I came up to the mountains and forgot my medication, etc bag at home and ended up in the hospital the very first day, so I've learned that lesson the hard way!

My medication stash

Table-top altar- one of my favorite things to do 

My most frequently used essential oils:vetiver
breathe, women's monthly blend, serenity, digest-Zen
and elevation

My incense and Palo Santo sticks!

Tip #2: I also find I am prone to nausea while in the car. So it is important to know your limits, physically. I am not able to, without paying for it, go much further than about two hours in the car. Fortunately we have a home up in the mountains which is just about two hours from our house. If we didn't have such easy access to this, I would find anywhere within a two hour-ish range from home and make it a fun trip; maybe with girlfriends, or maybe by myself. Sometimes I need time away but time with girlfriends can be just as vital. It is important though, if traveling with friends, that they know and truly understand any limitations your current condition may impact your ability to do various things during your trip. For example, tomorrow I am going to attempt doing my first post-operative hike and my friend is already aware that our hike needs to be the least strenuous and I am unsure how long I will be able to go and she is fine with that--- for that I am so grateful.

And this is the beautiful scenery that I decided to soak in for a few days this week, beautiful Big Bear Lake.

Tip #3: With endometriosis and various conditions we may have, particular diets help and everyone is probably using different techniques. I have found that I am best on a low FODMAP diet which fortunately allows me to eat a lot of foods and drinks that I enjoy. I will pack snacks that are appropriate for my diet, along with a couple splurge items (I believe in order to not despise the diet, it is important to splurge every so often with a small item). Like this trip, I brought all my fruit from home so I can keep up on my fruit-infused water. The kind I made when I first got here today was a recipe I just saw and had yet to try is strawberry, blueberry and banana--- it is sooooooo yummy! Bringing my own snacks and ingredients and whatever I need, like my big jugs of alkaline water, makes it easier to stay on track, for if I stray off too far I will end up feeling significantly worse physically.

Tip #4: Another thing that I have found helpful during travels that happened to be coinciding with painful flare days is MOVEMENT. For me some movement that helps the most is YOGA. You may have a different mode for your own rejuvenation and health, such as walking, tai chi, pilates, etc. Yoga not only helps me for seeking physical relaxation, finding balance and conscious breath. So I always make sure I give myself some time at the beginning and ending of each day for my practice- it is the best way for me to begin and conclude my days. If you do not currently have some type of movement in your life, I definitely recommend exploring different options and utilizing whatever is the most helpful for you.

On one of my hikes up in Big Bear I stopped all of a sudden and felt I needed to take a breath. I did. When I opened my eyes I saw a piece of confetti heart-shaped right at my feet. It was such a special moment- I truly thought my dad who passed nearly two years ago sent it down to me. He used to love coming up to the mountains!

Tip #5: Make sure you have plenty of activities to do inside, for those times that you need to keep quiet and stay "home." I love writing (DUH!) and so I always bring both my laptop and a writing pad, I also bring a coloring book just in case I get the urge to color. I also bring a lot of books. It can help not only make the inside time less boring but even more than that it can make it more enjoyable.

Unfortunately I am writing this from the couch and am in significant pain. I actually have tears streaming down my face. I've followed each of my tips and I know I've done what I can. I am just going to relax this evening and work on a technique I introduced in a blog a few weeks ago entitled What Else?, Part One, where we focus on what else is true, aside from how much pain we're in, in order to change our focus and attention.

Well I'm signing off to relax and hopefully find some peace, both emotionally an physically. If you find yourself discovering additional travel tips please feel free to share here and if I come across any others myself I will update this post.

Thank you for taking the time to read this, I hope this post has helped you to be able to enjoy traveling, while still experiencing your disease.

With peace and love,

Stephanie

 

What else?, Part Two

Feeling a little nervous
waiting for the dr to come in

Learned a little about
the GI tract

Boy has it been a difficult week. I saw the new GI specialist I was referred to and I've not felt so un-listened to in a very long time. He was out of the room before he even listened to my symptoms, so I followed him out and continued telling him what was going on, my god after waiting for 1.5 hours to see him, I wasn't going to leave without him hearing what I had to say. His response, well, why don't you try this new medication and I know it'll help you. I'll see you in a month. Naively I thought, maybe this "new" medication will help, but then realized when I picked up this "new" medication from the pharmacy that i've been on it before, with little to no benefit.  So that was disappointing for several reasons.

While trying to remain as positive as I can while feeling this overwhelming sense of hopelessness and despair I've fallen in love with these two following quotes/mantras that I find super useful:

Neither of these quotes take away my pain nor my feelings and fears; however they help me realize that though I am struggling today (and boy has today been a hard hard hard day) but it makes me feel as though I will be able to draw some benefit out of this experience, deepen my self-exploration, and even more importantly be able to use this struggle to help others.

I wanted to share a post I stumbled across this afternoon, written about an endo sister who unfortunately could no longer handle the chronic pain and suffering of endometriois and killed herself. They interview her mother. I will copy and paste the interview here because I feel it is important to read and I will provide the link here.

By Lisa Fipps managing editor editor@kokomoperspective.com | Posted Dec 10, 2009

Kristi An Rose suffered with endometriosis for 12 years, from 1997 until May 7, 2009 – the day she put a gun to her head and pulled the trigger.

It was a tragic ending of a life that held great promise, a life that is dearly missed, a life that could have been different if more in the medical community knew how debilitating the condition is, knew how much those with it suffer, and knew to take it more seriously, according to her mother, Sherill Rose Hill.

Nightmare begins

In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.

“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”

Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.

According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:

•extremely painful (or disabling) menstrual cramps; pain may get worse over time•chronic pelvic pain (includes lower back pain and pelvic pain)•pain during or after sex•intestinal pain•painful bowel movements or painful urination during menstrual periods•heavy menstrual periods•premenstrual spotting or bleeding between periods•infertility

A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.But then the endometriosis came back.

“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.

In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.

Besides, a hysterectomy is not a cure. Currently,  there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.

After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”

Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.

“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.

Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.

The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.

“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.

To say she was in pain is an understatement.

Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.

In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.

On April 16, 2009, Mike Hill died.

“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts:
“I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.” “She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”

On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.

“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”

As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.

“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”

Sherill broke down in tears.

Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”

What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.

“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”

To contact Sherill about the fundraiser, send an e-mail to endokristi@yahoo.com

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I feel like this article is the perfect tool to show the intense impact that endometriosis, along with the stigmas, medical ignorance and emotional strains have on our lives. It is easy to get to the place where you want to give up, throw in the towel, and just stop having chronic pain. It is truly exhausting and overwhelming to have pain all the time, especially when diagnosed with a disease that most people have never heard of, mostly downplayed and the medical  community itself even ignores our severe struggle and the battle we have to fight everyday to do things that everyone else does without much, if any, effort. 

In my personal experience as of late, I've been in a place of not having much hope, NOT feeding suicidal, but having a feeling of "what's the point?" It is exhausting to try day in and day out to have a normal life while living in excruciating pain, that happens to be invisible to the outside world.  Just because I can put make up on and look somewhat normal, if not pretty on occasion, that is not at all correlated to pain, or any lessening of pain. With my return to work approaching I am starting to get up earlier and put effort in everyday to get ready, whether or not I'm doing anything or going anywhere. I have got to get back in the habit of going into the world again, after nearly 6 weeks.

Right now with the pain I'm experiencing I am struggling holding onto hope. Actually to be more accurate, due to the nearly 20 year long stint with this disease, I feel I am no longer able to afford the cost of hope.

That is where I am now. Sigh. 

Signing off with love and sending healing love to any sisters reading this,

Stephanie