Posted by: thedianestory | March 5, 2013

Endometriosis – Physical Impacts

March 4, 2013

This week we are discussing the physical impacts of Endometriosis. Each person battling the disease will have her own story, but all will include pain, and lots of it. I have fought physical impacts from the disease from the moment I started my period, though I was not officially diagnosed until the age of 19.

Here I will share my history. I understand if you don’t care to read it all. But it’s my story and I think it needs told. I haven’t shared in quite this much detail before, because it is my life. It is personal. And it is scary to open myself up. But I feel empowered in this campaign to raise awareness for Endometriosis Research. And I feel like it is time for the silence around Endo to end.

My pain started when I started my period – age 11. I feel like I was instantly affected – like overnight my life changed. This impacted me because the pain started and that instantly played a cause and effect relationship on who I was and what I did for one week out of each month. I was the only one out of my friends who started their period in the sixth grade (lucky me) and while my friends all thought I was “cool” because I had become a “woman” they had no idea the secret agony that was beginning in my life. My pain was so severe that first year that I’d lie in bed in the fetal position for hours crying and screaming while my mom did what she could to make me comfortable. I remember one weekend my parents even calling my doctor at home, asking him to please call something in to give me some relief (Naproxen if I remember correctly – these being the days before Aleve was on the market).

I’d push through at that point and not miss any days of school, but my mom would write me a note to sit out of PE. I think those moments started the psychological impact the disease would play in my life. Having to sit out on the sidelines curled up in a ball, while the rest of the class was actually playing with a ball. My teacher, a male, wasn’t that kind of a soul about it either. I remember after a few days of sitting out (being in agonizing pain) him saying “what the hell is wrong with you – you can’t keep not participating.” Our PE time was right before lunch so eventually my mom would just pick me up on those days and take me away for a long lunch with her. I guess these are just the first moments of this horrible disease and pain that I remember and can look back at them now and see how fast my life became affected.

Eventually over the next few years, I began to miss a few days of school here and there because of the pain. Seventh grade brought with it a new set of challenges in that I became very ill with other stomach pain and digestive symptoms. It took months for the doctors to eventually figure out that I had H. Pylori and treatment of that would seemingly land me in the hospital for a week with an antibiotic induced bacteria infection C. Difficile. I’d find myself fighting for my life, and being resistant to the medication used to kill that infection. Eventually through hours of prayer from amazing prayer warriors God chose to heal me and I was able to go home from the hospital healed. I missed three-four months of school during my seventh grade year. All of this was intertwined with my heavy periods and pelvic pain. I remember the doctors asking for a urine sample and then being shocked when there was practically nothing but blood in the cup. I had to explain to them my uncontrollable bleeding. I think they were surprised at how young I was but how sick I was at the same time. There wasn’t a lot of that in the small town I grew up in.

Fast forward to eighth and ninth grade and my battle continued. I managed to fight through eighth grade and not miss too much school. Though for the one week a month that I was heavily bleeding I would usually get home from school and crash from exhaustion and pain. Those weeks were always difficult to keep up on homework and home responsibilities.

I can remember the summer after my eighth grade year, taking a vacation to the Grand Canyon and Universal Studios with my family. Family included my mom, dad and brother. I ended up being on my period during part of that trip. It was rough trying to have fun on vacation when I was on my period and obviously in pain. There we were at the Grand Canyon and Painted Desert – some of the most beautiful landscape in the country and I struggled to take it all in and enjoy it. I remember my brother begging me to go hiking down into the desert and I eventually did it, but it was a struggle from the pain. Fast forward to the Universal Studios part of the trip and the day in that park was like murder for me. My dad and brother couldn’t relate to the pain I was enduring and I just remember bleeding so heavily I was changing my pad every hour or two, but being expected to keep a smile on my face and keep my pace to get to walking through the park and pretending to have fun. It wasn’t that I was ungrateful for vacation, but rather every move hurt and even riding some of the rides made my pain worse!

By my sophomore year my pelvic pain was getting to the point that something had to be done. I couldn’t take the pain anymore. My symptoms started getting more severe. I passed out a few times at school. Once I was sitting in class and just blacked out from the pain, and once I was sitting at lunch with my friends. I remember sitting on the cold sidewalk of the school hallway writhing in pain and becoming lightheaded. My friends got me to the nursing office and called my mom to get me home. Also in this year I started having migraine headaches. The doctors could never explain them and did little to help me. If I weren’t missing school for pelvic pain I was missing school because of a migraine. With what I know now, I am sure the headaches were hormone related, but again at that point doctors were hesitant to believe the severity of my pain. There was a lot of stress in my home at this point too. My brother had left for college so I was the only kid at home.

I had my first pelvic exam at that point by the N.P. at my doctor’s office. Though she wasn’t extremely helpful in giving me an “answer” about my pain, she did start me on BC Pills and this helped in getting my periods a bit more regular and controlling the bleeding. This treatment helped in the beginning.

My Senior year of high school I made the decision to finish my education through the Independent Study program because my health was such a struggle and by this point I had a good job and could work as many hours as I wanted and I wanted to be able to work a lot and start putting money back for college. I graduated six months early and was done with high school in Dec. of 1999. This turned out to be in God’s perfect timing because about this time my pain became more and more bothersome and rather than having cyclic pain, the pain started setting in daily. By the time I turned 18 (May of 2000) I never had a day without pain.

At this point I started doing lots and lots of internet research. I had never heard of endometriosis but after researching pelvic pain, I quickly learned a lot about it! Reading the symptoms I was convinced that this was my issue. Everything sounded just like what I was experiencing. I shared my findings with my mom and she in turn talked to her GYN about it and he got me in to see him the next week. But when I told him what pain I was experiencing and what research I had done and that I thought I had endometriosis his response was “you’re crazy. No one under the age of 26 gets endo.” He did an exam and decided to start me on six months of Lupron injections. Those six months were seriously hell on earth for me. (if you are considering taking Lupron – DON’T!!!) I finally convinced him at the end of those six months to do surgery. I had my first laparoscopy June 1, 2001. During that surgery he found two deep pockets of endometriosis. He had to call in another surgeon to help him because “he had never seen that kind of endo before.” When I woke up from surgery and heard what was found, I was happy and angry at the same time. I knew what I was talking about! At my two week post-op appt. he said “guess what, young lady – you have endo.” I wanted to slap him across the face. That began the cycle of not being listened to and treated like I was crazy.

That surgery helped for six months and then I was back in pain. I did not want to have repeat surgery with this same doctor, for obvious reasons. A friend of my mom’s had seen a doctor’s office with “Endometriosis” on their sign in a town about 20 miles from me and told me about it. I called the office and got in to see this new doctor. He was great the first time I met with him and I had surgery 13 months after that first surgery of mine. He again found endometriosis. The surgery helped for six months. And so set the cycle for the story of my life. Between 2001 and 2006, I would have surgery every six months to a year.

Up until the beginning of 2005, I was able to fight through the pain. I still lived my life. I worked two jobs, went to college full time and was highly involved at my church. Many days I was on the go from sun-up to sun-down. It was hard, and I was on pain meds off and on to get me through but I was able to fight through and keep going to press on toward my goals. By the Spring of 2005 my body was getting weaker and I wasn’t able to push through anymore. The final breaking point was when I got really dizzy (because the pain was so severe) driving to my student teaching job out of town and barely got pulled over to safety on the side of the highway. That day was the end. I finished the semester of college, quit student teaching and stayed out on disability. I literally couldn’t do anything anymore.

By 2006 I was so done. I was on my fourth doctor (this fourth one being because I had state insurance and couldn’t see my specialist anymore) and I was done fighting this disease. I knew that a hysterectomy was not a solid cure or a guarantee of being pain free, but it was the only option I had to have any hope of relief and getting my life back. After several months of convincing my doctor this was the best decision for me, I had my hysterectomy on May 30, 2006. Surgery went well, and two weeks later I was feeling great. I moved into a new place three weeks after surgery, started a new job and got married August 5, 2006. I thought I had my life back. I felt like I was starting a new life and things were going to be good. I had energy again and a new zest for life. That lasted about five months.

Come January of 2007, I was beginning to feel pain again. At first I thought I was crazy. But I still had my ovaries at that point and thought “okay perhaps there is just a cyst or something growing. It can’t be endometriosis.” But the pain intensified. I had no insurance at the time and wasn’t sure what to do. After talking to my friend about it, she convinced me to go back to my doctor and get checked out. He wasn’t convinced it could be endo and decided to put me back on BC pills and see if my pain got better. By June of the same year I was not only, not any better, but seriously worse. I was scheduled for a laparoscopy July 3, 2007. The results – showed endometriosis. When I woke up from the surgery I was an emotional wreck, knowing this awful disease was continuing to plague me. That surgery did nothing to help me. I still felt awful even after the surgery. I finally had private insurance again and made an appointment back with my original endometriosis doctor.

This was now the end of July and he thought that perhaps my Interstitial Cystitis was playing a role in the pain. He hadn’t seen me since August of 2004, so was now entering back into my treatment post-hysterectomy and right after my recent laparoscopy. This was frustrating for him because he really wanted to do surgery himself to see what was going on inside of me, but I wasn’t ready to have surgery again and take more time off work. We decided to schedule me for a cystoscopy that August. My bladder was seriously inflamed and was definitely causing me some pain. He hydro-distended the bladder and put medicine in it, hoping it would calm things down and help with my pain. This procedure helped a little bit. But by the end of September I was in agony again. I made yet another appointment with my doctor to figure out what was next.

We scheduled me for surgery for December 2007 to remove both ovaries. My left ovary had visible cysts on the ultrasound and my right side was where my worst pain was. I was done and wanted them out. Hoping this would finally be the ticket to end my agony. During surgery my doctor found endometriosis growing yet again. However I was hopeful that with the ovaries gone and my doctor cleaning out the endo yet again that I would be pain free. I felt good for six months; Then came the following summer.

I was feeling bad again. Pain and nausea started setting in. By this time the disease and ramifications of it were taking a toll on my marriage. I watched my husband change. He wasn’t supportive of me anymore. He started going out with his friends and progressed into drinking more and more alcohol. So I suffered alone most nights. In August of 2008 my body was deteriorating and I started getting very weak and wasn’t able to fight the pain anymore. One night I started puking all night and couldn’t stop. I called my mom to come get me and she took me to the hospital. The hospital got me hydrated and called my doctor to tell him he needed to see me right away. My Endometriosis doctor wasn’t sure what to do at this point. He didn’t think surgery would really benefit me in anyway but thought we should send me to a pain specialist to see about a nerve block. He was also concerned about how sick and weak I was and told me I really needed to be off work for at least three months. Hoping that with rest I could get my body’s strength built up.

I saw a pain specialist that November and had my first nerve block. I woke up the next morning feeling great without any pain. I was hopeful that this would last awhile. The pain relief lasted only eight days. I was returning back to work after three months off right at that time. I made it through that first week of work but was so ready for the weekend to rest up, and was wondering how I was really going to continue. I was hopeful that my husband and I would figure out a plan for me to work less and focus on getting my body healthy. Fast forward a few days and I would find out that my husband was having an affair and was leaving me. One night in the middle of the night, my life would completely change. My husband would say the worst things to me imaginable. The disease, the chronic pain – all of it had played a role in him deciding not to love me anymore. Some of his statements were:

I’ve stuck with you through so many surgeries.

You’re so broken no one wants you.

No one will ever love you again.

None of your dreams will ever come true.

I’m going to destroy you.

And then he left.

So – how does this chronic pain affect my life? It ruined my marriage. It kills relationships. It stops my dreams. It makes me go through so many surgeries and procedures that I begin to lose count.

And there have been even more surgeries since that time. Including one with an endometriosis guru out of town, who even told me “I will never tell you the disease won’t come back. I’ve never seen a case like yours.”

All of this history clearly shows what this disease and chronic pain has done to my life. It has certainly limited it greatly. But there are so many unseen things that are affected with how I have to live my life. Great thought goes into every decision I make. I have to take into account how much energy I have, and what obligations I have coming up when choosing to try to actually live life and do something fun. Most times if I spend one day out, I can count on being absolutely sick, in horrid pain and having no energy for the next two days. Living like this has caused me to have to break countless plans with family and friends and kept me from making even more because I don’t want to have to end up breaking them. I know I shouldn’t feel bad when I have to cancel plans, but I do.

So here I am…2013. Medically disabled and desperately fighting for answers. Will you help fight for funding for Endometriosis Research? It needs to happen. We need a cure.

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Responses

  1. this is something i just shared with another blogger….i am a bit out of energy so am going to re-post the same here and try to stop by another time to say more…like you, i had some cruel docs along the way (my fav, sitting in that paper gown, trying to talk about a lack of libido due to the BCPs with a new doc…he said: “wow…and your husband still married you?”). my ex was not as mean as yours, but (the rest is the part i pasted to another woman who mentioned trouble dating)….

    my ex-huband eventually admitted that part of the problem was he had trouble dealing with my illness.. i actually understood that, i was just annoyed he didn’t say that BEFORE the wedding!!

    BUT, i later found an amazing man who loves me for who i am and sees beyond my illnesses. when we started talking, even before our first “real” date (met at a party), i sent an email telling him EVERYTHING about my physical issues and saying i only asked that he be honest with himself. he replied, “Not scared off yet!”. as we dated, i checked in a few times on how he was dealing with my illnesses…he never stopped saying he loved me even with the messy parts. when i had back surgery, he spent FIVE hours in the recovery room when they couldn’t find me a bed. he’s picked me off the floor. he’s held me when i cried. last month, after two years together, he asked me to be his wife.

    i’m not really writing this to sing his praises (i do that plenty on my own blog!). i just want you to know that there are men out there who have big shoulders. never give up and always remember you ARE worth it!

    • Thank you for stopping by! I’m so glad you’ve found a good man. I know they are out there!

  2. My heart broke as I read your story. Our stories are similar in many ways (If I had a dollar for every time I was told “I’ve never seen a case like yours.”)

    I am so sorry that you had to experience what you did with your ex-husband no one deserves that. I will agree with Cheryl though that there are great men out there who are strong enough to walk you through it. After all of the trauma and stress of the last eight years, I cannot imagine going through it without my husband. He has been my rock. This past summer with so many weeks being spent in the hospital. It was hard. REALLY hard. But he was right there and I am so thankful!

    There is a man out there for you. God will bring him into your life in His timing. You are amazing. You are strong. You are worthy of love and devotion. Don’t ever forget that!

    Thank you so much for all of the hard work you have put into this Blogging for Endo campaign! Lives are being touched in so many ways as a result. I know mine is!

    • Thank you Jamee. I appreciate your kind words and encouragement. It’s been a blessing to journey through life with you a bit. I’m enjoying the campaign. It’s inspiring me and helping me to feel a bit more empowered again. This life is not going to beat my down. My God is stronger than it all!

      Thanks again friend. So much.

  3. Hello!

    My story is a lot like yours. My problems started in high school. I was lucky – I started my period late because of my low body fat due to being a competitive athlete. But the day it started, I was anemic, in bed for 7 days, bleeding through 1 overnight pad and 1 heavy tampon every 2 hours. I would literally get up, change my feminine hygiene products, prop myself up on pillows and pass out. My mom had problems like mine, so she immediately took me to her GYN, but there was no diagnosis, except to rule out PCOS and other hormonal disorders.

    When I turned 20, I joined the Army because I could not afford to go to college on my own and my parents couldn’t afford supplemental loans. Imagine the worst possible environment for having “female problems.” I was in it. It was like being emersed in fire. Even the women around me hated me because I “made them look bad.” The docs couldn’t give me Aleve/Naproxen (same thing) because I’m ALLERGIC to non-steroidal anti-inflammatories (NSAIDs). The ONE thing that works in the early stages of inflammation. The pain by that time was chronic, and included nausea, fainting, digestive issues, and bowel and bladder spasms. After ruling out ovarian, cervical, uterine, bladder and colon cancer, the doctors finally did a laparoscopy. They told me that they might find nothing wrong. I was too young to have endo. Sometimes the surgery itself relieves the pain. Low and behold (no surprise to me), I had endometriosis. I had already researched it and had ensured my fiance/new husband that I had endo and not cancer. I had no idea that endo would continue to affect me at the same level for the rest of my life. None of the research indicated that that’s what endo does. All of the research said I would get better.

    That’s one of the reasons I’ve joined this movement. We need to get the truth out there. Endo is not cured by excisions, hormones, or diets. It needs comprehensive treatments to target the tumors themselves. There has to be something wrong with that tissue. I’ve studied immunology, anatomy & physiology and medicine. There’s no way that normal endometrial tissue grows as tumors on the outside of my reproductive organs. The definition of an invasive tumor is the ability to grow on foreign tissue! Endometriosis needs to be reclassified. It is not benign tumors. The tumors are invasive, by definition, and invasive tumors cannot be classified as benign.

    I’m so sorry for what you’ve gone through. My husband was also emotionally abusive. He used to tell me about how he was stuck with me because I was sick. Well, I finally was able to leave, and I’m making a new life for myself. But please don’t let your incredibly difficult past ruin your future. Find hope in new research initiatives, our very large community (174 million in the US and counting), and supporting organizations like the Endometriosis Research Center. See as many specialists as you can until you find a treatment that works for you. Also, contact the ERC to see which specialists they promote in your area. I contacted the ERC today through twitter and got a response within 10 minutes!

    If you need someone to talk to, we are here. WE will hold your hand and pour love into your life. We all know how it feels to be abused by family members (my sisters), significant others, and doctors. But we will not stand for the abuse and misinformation. We have to fight together to move endometriosis research forward.

    Love,
    Alison

    • Alison,
      You made me cry. Thank you for your love and kind words. You touched my life. Together we are stronger. 🙂

  4. Wow.
    Your story just resonated so much with me. I don’t think anyone truly gets the day-to-day impact endo can have on your life – not even the doctors!!
    I would have actually slapped that doctor. I am so very sorry for all you’ve been through. You are so brave.

    • Well thank you. I don’t feel brave, or strong. Some days I feel like I’m barely getting by. But I try to stay positive and keep pushing through life, knowing they one day I will have a new body in Heaven. 🙂


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