Let’s Talk Endometriosis..

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March is Endometriosis Awareness Month.. So let’s talk about it. What Exactly is it?

Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.  Mayo Clinic- Endometriosis

Now that we know what it is, let’s talk about it. I was diagnosed with it at 15/16. I was told I would probably never have kids. I remember sitting in the doctors office, the doctor telling me at 16, I’d probably never have children. I remember feeling so heartbroken, angry and confused. Why? Why was this being told to me. I didn’t understand at the time. No one really explained any of this to me. Soon i’d find out just what it all meant.

I had been rushed into emergency surgery in 2003, I was 17 years old. I had an ovarian cyst that had ruptured. While in surgery they removed my appendix, since most doctors were dismissing my pain as appendicitis. This surgery started what would become the “norm” for me. Another surgery revealed I was at Stage 4 at 18 yrs old. Unfortunately this wasn’t documented well by the doctor then. All we knew was that it was “everywhere”. We tried Lupron Depot, birth control. Various treatments to manage my symptoms and pain. Which just seemed to worsen each month. Lupron depot made it so I no longer had a menstrual cycle. This way they could manage the pain a bit better, unfortunately this led to other side effects from this medication, which is actually classified as a Chemotherapy medication. Here I was 18-20 and in menopause, on “chemo”. My life consisted of painful periods and doctors appointments.

My mom and I began to research. We found an amazing team of doctors in Atlanta at the Center for Endometriosis. I submitted a lot of medical records, and received word I would be taken as a patient. So off we went. Another appointment. Another doctor. This time though, we had hope. I was going to the best of the best. Little did we know just how things would go.

The consultation was overwhelming. I was basically informed i’d need another surgery. We prepared, we made plans. Traveling back and forth from South Florida to Atlanta wasn’t easy, but my mom made it happen. I was 20 years old, supposed to be in college and my periods were so bad I couldn’t function during that time. I remember my mom and I having the discussion. Me saying, “don’t let them take everything. I want a chance to have a baby later in life.” We expressed this to my doctors, Dr. Sinervo and Dr. Albee. They were aware of my fears, my anxieties, my desire to be a mom. They assured me they would do all they could. That day… that day is forever etched in my mind. Waking up in my hospital room. My mom sitting there, waiting for me to come out of the anesthesia. I looked at her, saw that she’d been crying. I asked her, “I lost them didn’t I? You took them out?”. I screamed, yelled and cried. Not only out of pain but heartbreak. She held me as I cried, as I mourned the loss. It may sound silly to some, but to me it was heartbreaking. She told me my entire right side was covered in endometriosis. The worst case they’d seen in someone my age. I had it on my right ovary, fallopian tube, intestines, pelvic wall. It was in a sense everywhere in my pelvic area. My mom had to make the decision for me, she had to make the decision to remove organs. Make the decision for her 20 year old daughter about her future. She agreed with my surgeons, remove the right side. So at 20 years old I had a unilateral salpingo-oophorectomy. This means, my right ovary and fallopian tube were removed. They did this to remove the endometriosis, to buy me time.

I then had to have a LEEP procedure due to pre-cancer cells found on my cervix.. Then.. then a miracle happens.. I end up pregnant in 2008. It was a shock, lots of crying. For 9 months there was no endo pain. No hellish periods.. It was glorious!

My son is now 10, he’ll be 11 in April. I’m 33 and I still battle endometriosis. I’ve battled it for 18 years, I’ve had 6 surgeries in total for it. My last one was in May 2018. They found two endometriomas in my left ovary. Once again my doctor did all he could to give me a chance to have another child. I’m once again at Stage 3. We’re considering reaching back out to the Center for Endometriosis Care. I need another surgery, however after 8 abdominal surgeries, they’re waiting until it’s absolute necessity.  I’ve had severe scar tissue. Scar tissue and adhesions on various organs, in various places. Scar tissue that made placing my feeding tubes, very difficult. It turns out the severity of my endometriosis has created quite the problems in my pelvic area. Intestines are fused together, bowel issues, bladder issues. Things you wouldn’t think about endometriosis affecting, but it has far reaching consequences. Even with my J tube, there’s damage from my endometriosis. They’re saying “frozen pelvis”. It’s horrific to realize just how damaging endometriosis is, and how little it’s explained.

I’m in pelvic floor physical therapy to help with various symptoms from my endo. I have trouble going to the bathroom, both #1 and #2. This is being attributed in part to my endo. Horrific menstrual cycle pain. Every month i’m out of commission for a few days. I’ve tried birth control, sadly they just make my cycle last for weeks, which I can’t cope with. Pain with intercourse, pain with bowel movement, pain with movement in general at times.. These are things rarely discussed or acknowledged by some doctors. Things that are often dismissed. I’m hopeful that Pelvic Floor PT can help, if anything, may be it can help with going to the bathroom. Or help with the pain. Even in some small way would be appreciated.

Knowing i’m running out of time, knowing that each month my pain and periods are absolutely horrendous, knowing I need more surgeries for my endometriosis, it gets to me. Sometimes I debate if it’s time for a hysterectomy. I begin to accept that fate, then it becomes too overwhelming for me. Too much, too soon. I know that’s my eventuality. I know that is what I will end up needing, but how do you mentally prepare for that? How do you mentally prepare for no longer being able to conceive? It’s not easy. In 2019 it was discovered I have a hydrosalpinx. Meaning my only remaining tube is blocked. I have to see a fertility specialist to see just how blocked. I haven’t prepared myself for that yet. I can’t determine which would be easier, just doing the hysterectomy and giving up, or trying with the fertility doctor, and having hope. How do you make that decision? It’s incredibly difficult to make.

The emotional damage from my salpingo-oophorectomy was immense.  I felt like less of a woman. I felt broken, damaged. I wanted to be a mother, and here i’m facing that I would probably never be a mom by natural ways. Depression, anxiety it was there. I had to work through the pain, not just physically, but emotionally as well. That’s what no one tells you about endometriosis. Yes physically the pain is unbearable, but emotionally, it’s unbearable at times. No one talks about the mental and emotional aspect of living with endometriosis. I’m not sure why, is it taboo? It needs to NOT be. It needs to be discussed. Women struggle with both aspects of pain. Let’s be there for them. Endometriosis is hell. It’s physically and emotionally painful. It robs women of their joy, their lives, even motherhood.. their hopes of motherhood are dashed at times due to their pain, or severity.  It can affect relationships. It can damage them. We feel inadequate. We wonder why our partner stays, we wonder how a new partner will feel when they find out you may not be able to conceive. Don’t push your partner away. Communicate your feelings, your fears with them. Lean on them. Let them help you face this.

The feeling of being unworthy due to being infertile, or due to the struggle and pain with your endo. The feeling can be so overwhelming, so soul crushing you can’t breathe. You scream; “Why”, you beg and plead. You try to grasp this, try to grasp how this happened. You feel alone, broken, scared, angry. I assure you, you’re not alone. You’re not broken. You’re not less than, you’re not inadequate. You’re not unworthy. It’s ok to be angry, it’s ok to be scared. You’re worthy of love. So damn worthy. Just know you have a community of women behind you lifting you up in your time of pain. We are here, we will help you shoulder this. We are a sisterhood. We are a community. We are fighters with hope for a cure.

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Facing my Past, My Heart

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My last post I mentioned about the story I wan’t ready to share…Today i’ll share that story.

Seven years ago I met a man that would unravel my world. This man, He awoke a part  of me that I didn’t know existed..

He was there every step of the way.  From the very beginning of my health failing, he was there. We grew closer, we grew to love one another. We always laughed, we always touched. We always had to touch. He was everything to me. Our love was on a level I’ve never witnessed or felt before.  I opened up in a way I never had, just as he did to me. He held this aura about him. He took care of me in a way i’ve never experienced. My last relationship, i’d been so used to hurtful words, insults. This caring, and loving, I wasn’t used to it. I didn’t know how to act, how to handle it. (This is important). I loved the way he was there, he was my partner in all ways. See, everyone knew of the love we had, everyone knew what we had was on a level rarely seen. We were “Noah & Allie”.. we were a perfect match, in every way. He challenged me, encouraged me, supported me in every way.  It was him that convinced me to write my journey. It was him that encouraged me to go back to school.  

We grew so close, so quickly. We became so important to each other. We needed each other. We loved one another in a way that’s once in a life time. In December 2011, I collapsed while at work. Something was wrong with my heart. I was scared. I remember calling him as I was being loaded into the ambulance. Something was wrong, and I didn’t know what it was. We found out, I had SVT, and I had hit nearly 200 bpm.. My life now consisted of doctor appointments, tests, and medications to control it. In January nothing was working. I was rushed into surgery, a cardiac ablation. He held my hand as I waited to go back. He and my mom were with me. He was always there. Waking up in recovery, seeing him still there, was a relief. We hoped the surgery would be a success. We prayed. By middle February I was collapsing, I was short of breath. It turned out, the surgery didn’t work. I was rushed back in for another surgery. This time, I was getting a pacemaker. As a result of missing so much work, I lost my job. I didn’t know what to do. My mom lived 6 hours away. My dad was in Florida, and here I’m in Virginia. Unfortunately we couldn’t move in together at that time. What was I to do???  My guy, He thought of a plan. His plan, I should move in with my dad. Better doctors for me, better medical care. I didn’t want to. I was so scared… Losing him, it wasn’t an option. Losing him would be like losing part of myself. Though, I knew he was right. If I stayed in Virginia, I’d deteriorate. With a heavy heart, I packed my apartment, hired a moving truck. Started the long drive to my dad’s house In March 2012. Moving back in with my dad was hard. I was 25, with a child. I shouldn’t be back here.

The next year and a half we traveled to see each other. He always made time for me. Our last trip was life changing. That trip led to me making a decisions that affected us both. There was no discussion. There was nothing. There was me making the decision..  As I recall the memories, my heart aches. Sadly, my decision was that I walked away.. 5 years ago I walked away from someone that meant the world to me. 5 years ago, I ripped my heart in two. The pain, the heartache was soul crushing. Losing him, through my fears, my insecurities was hell. He had no idea why I walked away. He didn’t know the last time I saw him would be the last time. He didn’t know the fear that was in my mind, in my heart. Instead of talking to him, like we always promised to do, I simply turned my back and walked away. Destroying both myself and him in the process. He reached out to me repeatedly, for months, for years.. I ignored him. I didn’t listen. I couldn’t cope. Instead I buried it all. I buried all my emotions for him. I buried my confidence, my strength, my personality. Essentially, I buried myself.

Did it work?? Somewhat.. every day I thought of him. Every day it ate at me. Every night the dreams, the memories haunted me. The regret i’ve held is immense. He reached out to me a year ago in June 2017. I was at my best friend Jen’s house.. I got an email from him, read it and couldn’t cope. Jen tried to get me to email back, to listen to him, to talk to him. I couldn’t. I refused.

I tried to move on. I tried to bury my love for him. I tried to bury myself. I did a good job too, until it all blew up in my face. After ending my engagement, I thought of him. I needed to talk to him I needed him to know I almost made a mistake. I felt this overwhelming need to talk to him.

On what would have been my wedding day, I finally typed that reply to him… after 5 years. My heart pounded. Would he reply? Would he ignore me, as I ignored him. It took nearly 11 hours for a reply. After that reply, 3 hours after that we were on the phone. When I answered that call, it was emotional. It was instant tears.  There’s no way to describe what I felt. There’s no way to describe what I felt for him. “Hey you”..was all it took to unravel the carefully constructed walls around my heart… “Hey you” was all it took, for every memory to flood me, for every emotion to pour into me, for every “I love you” to fly back into my mind. My world unraveled that night. But really..it unraveled 7 yeas ago when we met.. 7 years ago when I said “I love you” after he brought me donuts to my office, and I said it for the first time. 

That night.. We talked, I mean really talked. Losing me nearly destroyed him, just as my losing him nearly destroyed me. That phone call shook my entire foundation.  I cried, yelled, raged once we hung up. My mom held me on the ground as I cried, letting 5 years of anger, betrayal, longing, regret and love out.. The rage, the resentment, the regrets I’ve held. I still hold. He asked me why.. why did I leave? This answer isn’t an easy one, but here it is.

I let my health be a part of the reason I walked away. How do you walk away from someone that means so much to you?? Let me tell you, it isn’t easy. It’s painful. It’s emotional, it’s rage it’s overwhelming fear. I knew my health issues, weren’t an issue to him. He cared about me, and wanted me, regardless of whatever health issues I had. He was caring, loving, supportive. I’d never experienced that. It scared me. I didn’t know how to cope. This love, this supportiveness, this encouraging partner, I didn’t think I deserved it. I didn’t think I was worthy. I didn’t want to be a burden to him, I didn’t want to hold him back. So, I simply walked away. Hurting both of us in the process.

We’ve talked every day since we reconnected. He knows me better than I know myself. Even after all this time. I wondered, If we saw each other, will it have fizzled, or will it all still be there, but stronger. Well i’ll tell you… It’s still there. Stronger than ever. Seeing him after all these years was emotional. Being in his arms again, was liking coming home. Hearing him tell me what losing me did to him, made me sob. This big, strong man loved me sooo fiercely. He stills loves me. This man, even after I left, continued to love me, continued to have hope that i’d come back.  It took me a while, but I came back.

I don’t know what the future holds. What I do know, is i’m not running again. I’m not walking away this time. I’m standing firm, facing him and all these emotions head on.. I know what we had..what we could have.. It’s something others dream of.. He was my one… 5 years later, we’ve found our way back… As much as losing each other hurt, I think we needed that time.. We needed to grow as individuals, before we could grow as a couple..I needed to know my worth.  I think it was the right person, just the wrong time. We faced so many obstacles at that time.. He’s never been far from my mind, he’s never been far from my heart.

I’ve spent the lat two months doing so much reflection. So much thinking. So much realization. Realizing I hid my dreams, my goals.. I hid myself for the last 2 years..Well technically the last 5 years. Why?? Why did I bury myself? Why did I lose myself? The fury, the rage took hold of me.. I gave up so much of myself. I lost so much of who I am.. Who I was.. I want me back. I want to be me again. Bright, confident, happy. I’m working on rebuilding who I am. Rebuilding my strength, my confidence. I’m going to rebuild myself stronger. I’m chasing my dreams, my hopes. I’m not giving up. Not this time.

I am beautiful, I am strong, I am a warrior. I won’t ever lose sight of myself again, for i’m rising from the ashes of who I was, to become who i’m meant to be. Stay tuned, for this warrior is just rising from the ashes and will be stronger than ever.

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