Monday, January 20, 2014

Bloggers Unite for #EndoMarch2014: Week 2 - What the EndoMarch Means to Me


The Million Woman March for Endometriosis is coming up on March 13th, 2014. This will be the first worldwide effort to raise awareness for endometriosis, and it's going to be an empowering, emotional day for me. Not just because Endo has put me through years of severe cramps, bowel disturbances, acute abdominal pain, ovarian cysts, medical menopause, serious damage to my pelvic organs, and 2 surgeries, but also because of my battle with infertility.  

On November 30th, 2013, I lost my first pregnancy at 6 weeks. I had been struggling to conceive for a year, and I was overjoyed when I got my first positive pregnancy test. I thought my battle with endometriosis was finally over, that I had finally conquered the most heartbreaking side effect of my disease. But my joy quickly turned to fear as it became clear that my baby was not growing as she should. Despite close care from the doctor who finally helped us get pregnant naturally, without IVF, my dreams of holding my child slipped through my fingers and disappeared. 

To understand how devastating this loss was, it is important that you hear how endometriosis has stolen so many other joys from my life. 
(I apologize in advance for the novel...it's pretty difficult to squeeze 16 years of suffering into a small space)

Me at 16, before any diagnosis, major complications, or treatments 

I have been living with endometriosis for about 16 years, although research suggests that endometriosis is laid down during embryonic development, meaning we are likely born with this disease. When I think back on my childhood, it's possible that my bowel endometriosis symptoms existed even back then, but it's very difficult to say for sure. Most likely, my endometriosis began with my period in 1998, when I was 13 years old. For 4 years, I lived with cramps that lasted around 14 days per month, which got worse during my period. I could often be found in bed with my heating pad, and thinking back, I was already dealing with chronic fatigue. My family didn't understand why I needed so much sleep. When I was about 17, my mother took me to the clinic where she worked to get me treated for what she thought was PMDD. I began taking conventional birth control pills that were supposed to balance my hormones and relieve my symptoms. 

At 17, shortly before I began birth control for my cramps that lasted 2 weeks per month

For 2.5 years, I stayed on BCP, but eventually had to stop taking them due to severe migraines that would last up to 3 weeks, and brought sensitivity to light and sound, nausea, and even aura. My doctor said this signaled risk of a stroke, and I was told not to take BCP containing estrogen again. Just a few months after quitting the pills, during the summer of 2005, I landed in the emergency room. I had been having severe pelvic pain for a few days, accompanied with nausea, dizzy spells, and diarrhea (get used to talking about poo if you have bowel endo...it's going to be a big part of your life!). To this day, that pain is some of the worst pain I have felt. I thought I might be dying. I could barely move, and had to crawl to my phone and call 911. 

The ER doctors found 2 kidney stones and an ovarian cyst. Although this cyst was complex (not part of ovulation, but a cyst containing blood, and possibly endometriosis; cysts containing endo are called endometriomas), the doctors did not tell me of what that meant, nor did they treat me for it. They sent me home with a urine strainer, instructing me to try to catch the stones. That was that. 

Me during my senior year of college, when I had chronic ovarian cysts and no treatment or diagnosis

Over the next couple of years, my junior and senior years of college, I struggled with recurring ovarian cysts, some of which ruptured. I began missing school and social events. My professors told me to take care of myself, as if I were bringing this all on by partying and eating poorly. On the contrary, I spent quite a bit of time sleeping from the exhaustion and pain. Because I was on student health insurance, I was being treated by doctors at the student health clinic. Without a primary care doctor, each visit was like starting fresh, and I was told over and over and over that cysts were a normal part of being a woman. I felt alone, responsible for my pain, and inadequate as I struggled more and more to keep up with coursework.  

Graduating from college in 2007, shortly before I was unofficially diagnosed with endometriosis

In 2007, after I graduated from college, I went to the ER again with pelvic pain and dehydration. A cyst found a week prior had ruptured, and the doctors (unable to find a source for my pain) ordered test after test, all of which were invasive and painful, for a girl with endometriosis. Endometriosis can make pelvic exams and ultrasounds extremely painful. When I experienced excruciating pain and refused a pelvic exam, I was accused of being a rape victim, and eventually released with inconclusive tests. They referred me to a gynecologist and sent me on my way. 

This ER visit was not covered by my insurance because I had reached my limit after so many ultrasounds for cysts. It cost me $6,000.

The gynecologist I met with told me I might have endometriosis, and gave me several options. I could go on progesterone therapy (much like BCP, but with no estrogen), shut down my ovaries with Lupron, have a baby, or have surgery. She told me, however, that it was too soon for surgery, and that we needed to see how I responded to hormonal suppression first to diagnose my endometriosis. This is actually false. Surgery is the only way to officially diagnose and effectively treat endometriosis by removing it completely. Excision surgery gives women with endo the best chance at ridding their bodies of endo. It involves cutting the endometriosis out like a cancer, as opposed to burning the surface of the disease and leaving the rest behind (called ablation). 

I began taking Norethindrone, a progesterone therapy. However, the first dosage amount did not help me. I continued to get painful cysts, which were so bad I couldn't lay on my side, and I often vomited from the pain. I struggled with my attendance at work, but without a diagnosis, I had no way to advocate for myself. I began to believe those who told me I was lazy, undependable, flaky, and weak. I began to internalize my disease and blame myself for not being strong enough to deal with my symptoms. My doctor increased my dosage, and after about 6 months, my periods stopped. I had been put into medical menopause, something I had not wanted, and was not prepared to deal with. But I figured it was my lot in life, that I had no other choice.

Fall 2008, my ovaries had finally shut down and I began experiencing weight gain and menopausal symptoms

I stayed on progesterone for 4 years, living with menopausal symptoms in my early 20's. I experienced hot flashes, night sweats, fatigue, a change in metabolism that brought on 50lbs of weight gain, despite diet and exercise changes. The weight gain affected my overall health, with increase in blood pressure, cholesterol, and even fatty liver (thankfully, I worked even harder to change my diet, and the fatty liver resolved, even though I did not lose much weight). I eventually experienced feelings of helplessness and depression, believing there was no hope for me. That this was my life. I tried to adapt, but found it very difficult.

I started this sewing blog as a way to deal with my health problems. Sewing has given me the outlet I need when times get tough.

In 2011, I went to a new gynecologist. I told her that I wanted to stop progesterone and have surgery. I wanted an official diagnosis, to know exactly what was going on in my body, and hopefully get it out of me. She told me it was not necessary, and suggested Lupron. She also referred me to a pelvic pain specialist after a failed attempt at a pelvic exam left me screaming and crying in her office. Without knowing the full potential side effects, I started Lupron, and began a new chapter in my life. 

Before I could take Lupron, I had to have a period. It was excruciating, more pain than I had ever experienced, with pulling, stinging, and burning when using the bathroom, along with severe cramps. I thought perhaps I had forgotten how bad my periods were. I had no idea that it was possible that my endometriosis, which produces its own estrogen and can effectively feed itself, could have been progressing while I was on hormonal suppression. The Lupron did bring relief, and I felt more like myself than I did on progesterone. However, I bled every two weeks, and as soon as it wore off, my pain was back. At this time, my bowel symptoms increased as well, and I experienced severe bowel attacks (painful cramping, sweating, nausea, dizziness, heart palpitations, and diarrhea that lasted for hours). I missed a lot of work, and eventually lost my nannying position (strangely enough, employed by a woman who also had endo), even after I explained the nature of my disease.

A cake my husband bought for me before my first surgery...I requested the phrase "Cut It Open" because I was finally going to get some answers

At the same time, in 2012, I met with yet another gynecologist, who I told I wanted surgery. She told me it was too soon, that my pain was controlled with hormonal suppression, so it was not worth the risks. I had now been living with endo for 14 years, and had been on hormonal suppression for 5 years. I was frustrated, but agreed to go back on Lupron (which can only be taken 6 months at a time, with at least a 6 month break in between). First, my doctor wanted to check my uterine lining, and sent me for an ultrasound. A few weeks later, because my doctor had been on vacation, I got a call that I had an ovarian cyst. I was not surprised; I had had so many already. But this time, it was not treated lightly. 

My cyst was complex, and was measuring about 7cm in size, about as big as a chicken egg. Although she did not come right out and say it, one major concern was ovarian cancer. I was sent to a diagnostic ultrasound office, where a radiologist told me she could not rule out the chance that the cyst was cancerous. It would have to come out. 

I was finally getting my surgery. 

Waking up from my first surgery

At my July 2012 surgery, at age 27, I had stage III endometriosis, involving my pelvic wall, ovaries, and bladder. She said she could also see a visibly inflamed colon (not surprising, as adhesions had pulled it into an S shape), but she did not touch it. This surgery would not bring the relief I needed. Even though I asked this surgeon point blank if she could and would use excision to remove any endometriosis, and she assured me that she would, she used ablation. This burns the surface, leaving disease behind. Because of this, she told me that I would immediately need to try to have a baby, but because my husband and I weren't quite ready, I was put back on Lupron. Unfortunately, this time, it did not help. And the side effects were serious. 

A bone density scan revealed I had bone loss in my spine. My doctors had failed to ask about a history of bone degeneration, which had been found in my low back when I was 18. The damage was done...Lupron had made this worse, and I could no longer take it. Not only did I lose bone density, and a good amount of hair, I found no relief. My periods were just as bad, and within months, I was worse than I was before surgery. I had daily cramps, and was now struggling to get pregnant. 

3 months into trying to conceive (TTC), my doctor told me I needed to see a reproductive endocrinologist. She found that I wasn't ovulating, and put me on the fertility drug Clomid. Unfortunately, she did not monitor me, and I developed a 5cm endometrioma, which eventually ruptured. I had extremely heavy bleeding, to the point that I was passing out, accompanied by passing large clots, dizziness, nausea, and severe pain. Free fluid was found during an ER visit, and my life changed.

In February 2013, just two days after my ruptured endometrioma and trip to the ER, my husband and I held our wedding reception. Because I was in so much pain, I faked dancing by swishing my dress around.  

For the next 5 months, I lived in daily, debilitating pain. Most days, I could not get out of bed. I dropped out of graduate school, but continued to work 10-20 hours a week. The rest of the time, I was exhausted, and in pain. I had sharp, stabbing, pulling pains all over in my belly, and when I had my period, it felt like steel rods were inside my body. I couldn't even roll over in bed during my period. I continued to bleed heavily, pass clots, and have pain that I often could not even breathe through. The pain was indescribable. I needed help. 

I turned to my gynecologist, who dismissed my pain, telling me it was impossible for my endo to grow back so quickly. She said the severe bowel symptoms and agonizing rectal pain must be a gastrointestinal issue, and referred me to a GI. When my colonoscopy came back normal, she threw her hands up and told me to just get pregnant. I begged her to help me, I begged for another surgery. In response, she told me that my endometrioma must have been a part of ovulation, and that another surgery would just put me at risk for complications. She told me she highly opposed a second surgery because my three week recovery from my first had been so bad. 

A recovery. A recovery was not worth removing my endometriosis and relieving me of the hell I was living in. 

I took matters into my own hands. I spent all my free time researching endometriosis, joining support groups, reading medical articles, and pursuing excision surgery. I knew that excision was my best chance at ridding myself of this disease. I sent my records to Dr. Patrick Yeung in St. Louis. Within two days, he called me (while on vacation) to tell me he had a plan to help me. 

In June 2013, I flew to St. Louis and had excision surgery. This video explains what he found. 


For those who can't view the video (it is not available on mobile devices), my surgeon found severe inflammatory stage IV endometriosis. Adhesions had fused all of my pelvic organs, causing distorted anatomy.  He excised 18 separate areas of endometriosis, confirmed by pathology including my bladder, uterus, both ovaries, peritoneum (lining of the pelvis), appendix, ureters, fallopian tube, left round ligament, cul-de-sac, pelvic brim, bilateral ovarian fossa, bilateral uterosacral ligament, and rectocervical space. I also had bowel endometriosis. My ovaries each contained an endometrioma, and were pulled behind my uterus and adhered to my posterior pelvic wall. My bladder was folding in on itself, my appendix was kinked into an S shape, my left Fallopian tube was kinked shut, and my rectum and vagina were glued together with dense adhesions (causing the rectal pain). I also had significant retroperitoneal fibrosis, scar tissue growing on my ureters which could have eventually blocked them off, leading to kidney failure. 

Left: The end result of my first surgery, 2012. Right: What I was living with in 2013 just 11 months later. Adhesions had fused my pelvic organs, which should be able to move freely. Explains why it hurt to roll over in bed. My organs were being strangled.

My gynecologist had put my life at risk by not listening to my pain. If I had not had surgery, endo would have destroyed my organs, could have led to a bowel obstruction or kidney failure by blocking my bowel and ureters. If my endometriosis had gone untreated by not having another surgery, I could have suffered life-threatening conditions. 

And she was worried I would have a rough recovery?

My recovery from excision was far easier than my recovery from ablation. Instead of a 2 weeks in bed and 6 months of incision complications, I was up and about after a couple of days, and doing chores after 10 days.

Thankfully, in the months following my excision, I became a new woman. I could do things I hadn't done in over 10 years, like running and jumping, having boundless energy, and even having the ability to conceive a child. I started seeing a NaPro technology doctor, recommended by my surgeon, and within two weeks of diagnosing and treating hormone imbalances, I was pregnant. We tried everything we could to support the pregnancy. Unfortunately I miscarried, and began having pelvic pain again. My NaPro doctor sent me for an MRI, which found something none of us expected. 

I found out last week that I have two complex cysts on my right ovary which have tripled in size in a month, and now measure a total of 5cm.This is not totally unexpected, as ovarian endometriosis does recur even after excision. It is believed that endo is found deep inside the ovary and is pushed to the surface when a woman ovulates. What we did not expect was fluid in my left Fallopian tube. This may be something benign, or it might be leftover pregnancy tissue, which we now think may have been ectopic. Either way, a blocked tube puts me at risk for a future ectopic pregnancy, and the tube will need to be removed before we can safely move forward toward conceiving again.


Everything happens for a reason...the happiness I felt during this photo was like sunshine peeking between storm clouds

As it stands, I now face my third surgery in two years. I have scheduled it for July. What we will find, I do not know. What I do know is that I have an exceptional surgeon on my side, one of only 100 in the US who is meticulous and skilled enough to remove all of the visible disease. To me, the EndoMarch is my chance to share my story. It is my chance to give a voice to women with endometriosis, and fight for better diagnostic care and treatment. No one should live through what I lived through in the last few years. No one should be asked to leave disease in her body that will impede her ability to function, and to conceive and carry a child. 

It is time for our voices to be heard. It is time to end the silence.  


18 comments:

  1. Thank you for sharing your story! I too live with endometriosis and I had no idea how many other women there were with it. This made me excited about the march! Thank you again for being so brave and sharing your own personal hell so boldly! You are an inspiration!

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  2. Thank you so much, Jessica! :) I hope that you have a good treatment plan in place. If not, send me a message and I will help you connect with a good specialist.

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  3. You are so brave and I applaud you for being your own advocate! Don't lose faith or hope! I will keep you in my prayers!

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    1. Thank you so much Sara! I appreciate it!

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  4. You are my brave, tough, girl and I am so proud of you!
    Here is what my friend Debbie said about your blog post: "Most women would toss in the towel after so many doctors not listening. Not Kelsey. She has the gumption to take on the medical field and find the answers and healing that her body needs.Stay strong and never give up, your family will be at your side always."

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    1. Thank you very much. The sad thing is, being brave doesn't come easily. It takes years of living in pain and anguish to learn to handle it, and what to do. It doesn't often feel like bravery during...it just feels like surviving. Please tell Debbie thank you!

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    2. Yes, that is true...I have felt that about my conditions too.

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  5. ...and this is what Randy said about it: "Her inner strength is an amazing attribute!"

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    1. Please tell him thanks, and chocolate was a good partner in building that strength. ;)

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    2. Kelsey,
      You're welcome, but, I'd actually like to thank you for the education you've supplied me, as well as the story of your continual fight to beat your disease. From what I've read here and what I've learned about you from your mom, the disease has no chance! I can't wait to meet you!

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    3. Thank you, Randy. I hope someday everyone will know about endometriosis, just like they know about breast cancer. Every woman should know what it is and what the symptoms are. Looking forward to meeting you as well.

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  6. Kelsey, I am so sorry for all that you have had to go through. Thank you for your courage in sharing your story. You are a fighter! I am sure your story will encourage and help others on their journey. I look forward to meeting you sometime. Your mom is awfully proud of you and I can sure see why!

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  7. Thank you, Diana. Did we meet at my grandfathers funeral?

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  8. Yes, we did very briefly but I didn't figure you would remember me on such a sad day.

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  9. I'm so sorry for your several failed pregnancy. but I'm sure, you are the strong woman. thanks for your awaraness in this isue. salute for you
    regards
    jilbab

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  10. I stumbled on your blog as I was looking for a New England support group. Yours is quite a journey...thank you for sharing it with us. I am 4 weeks out from excision surgery and slowly healing.

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  11. My wife suffers from endometriosis, so I understand what you're going through. She has had to face numerous surgeries and drug trials - she is a very brave woman! I know sometimes that she feels like a burden, but I want her to know that I love her and that I'm here for her whenever she needs me.

    Jason Hayes @ DECORM

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