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From Suffering to Gratitude – My Experience with Endometriosis & PMDD

(Warning:  I use the words Boobs and Period in this post.)

When I was a young teenager, I was a girly-girl on the inside, but probably more like a tomboy on the outside. I loved girly things such as Barbies, dancing, and crafts. I also loved to play basketball, adventure in the woods, and ride motorized bikes. I had a compassionate and gentle heart inside this gawky, skinny, and narrow frame. None of this concerned me growing up. But, by the time I turned 13, I grew nervous about having no boobs and no period.

I was growing tired of stuffing cotton balls in my training bra and insinuating to my large-chested girlfriends that I was, in fact, getting my period to avoid the embarrassment that I was this under-developed reject. I remember crying to my mom and hearing her tell me that someday I’d be grateful for “blooming late” as she so delicately referred it to. She assured me that late bloomers were blessed and that I would someday be grateful for looking young for my age.

Unfortunately, I didn’t want to hear this at that time. I wanted to feel like a woman, immediately if not sooner! I even prayed, desperately. And since God apparently has a sense of humor, He not only gave me boobs and a menstrual cycle reluctantly (after I turned fifteen), He allowed my body to fully experience the consequential awfulness (most-likely bestowed upon us women thanks to our beloved ancestor Eve’s rebellion). The few extra years of my impatience did little to prepare me for the pain and the horror that would occur almost half of every month for the next several decades of my life.

It only took a few cycles to experience this unbearable pain that had me doubled over for days each month. I actually blacked out from time to time and swore that I was having contractions that women only experience in childbirth. The pain was so unbearable that I would have fits of hysteria. My mom once gave me painkillers, as she felt so helpless, especially because my doctors did not understand why I was making such a big deal out of a period. The best I could describe it was that someone was holding a lit match and knife on my insides. The pain was in my pelvic area, and over the course of several months traveled into my lower back and my thighs. This did not seem like an answer to prayer to me! Why didn’t I listen to my mom when she warned me to be patient and grateful?

For the next 13 years I went from doctor to doctor, not getting the answers nor help that I was desperate to find. My friends and coworkers became slowly aware that I was experiencing something more than normal menstrual cramps. I would be sick in the bathroom and/or in bed for long periods of time. This became debilitating throughout college and during my years as an elementary school teacher. And it was humiliating to confess to a bunch of 8 year olds, “Sorry boys and girls, but Miss Rachel needs to go to the nurse…again!” God bless their little hearts, they were always so adorably compassionate with me, and that kind school nurse became more than accustomed to my frequent visits.

At one point, I went to this new doctor who had me in tears because he belittled me and invalidated my complaints. “Every woman gets cramps, you know!” I was a newlywed (to my ex-husband) at the time and dealing with debilitating pain too many days of each month that it was taking a toll on my moods, especially when my Ex wanted to see his family a few times each week. I couldn’t help that I was sick half the time, and I just needed to rest. Little did I know back then but I had more than just the most severe stage of Endometriosis. Accompanied with that came the worst extreme of PMS, another debilitating illness that my doctors would not suspect, validate, nor treat.

After 13 years of suffering, by the time I was 28 years old I was convinced that I had Endometriosis, a gynecological condition in which cells from the lining of the uterus grow in other internal parts of the body. By the grace of God, I finally found a doctor that year who cooperated with my plea to do surgery. I remember waking up in recovery. My doctor was holding my hand. She was extremely compassionate and told me exactly what I was desperate to hear. I had so much scar tissue from Stage 4 Endometriosis (which evidently spread and multiplied with each cycle over time) that it had surrounded my bladder, ovaries, and God knows where else. I was relieved to find out that I was not crazy, yet extremely despondent over the fact that I had spent years and years suffering for that long with no help from the medical (so-called) experts.

After a procedure called ablation, I was given my first prescription of painkillers that would soon become a little too essential for my pain. I thought my years of suffering would come to an end, but in addition to the fact that Endometriosis is chronic and therefore “comes back” again and again, the next chapter of my health story would include a painful experience with infertility. Naturally, since my ovaries were covered with scar tissue, they were unable to function to their God-given capacity. Once again, I was unprepared (this time, emotionally) to deal with the pain that comes with the failure to conceive.  This, along with the pain associated with the endometriosis, surely made it difficult for me to deal with my failing marriage.  Unfortunately, my ex-husband may or may not have known just how sick I was and for whatever reason, God allowed that marriage to end.  And by that time, I developed the Epstein Barr Virus, most likely from the level of stress on my body.

I would often ask God, “Why me?” I remember praying from a young age to be this wonderful wife and mom. I actually prayed for my unborn children when I was a child, myself! I could not understand why I was suffering so much. To add insult to injury, with each month of experiencing the debilitating pain from the endometriosis, with no baby, and now no husband; my doctor put me on a medical leave from the job that I loved. While my body most definitely required the time to rest, I was not emotionally prepared to deal with my state of flux. I was emotionally unstable and therefore the next few years of my life, and the decisions that I made, were somewhat off-balance. It’s as if I spent at least 5 years of my life like an unsettled ship at sea.

In addition to all this, at unpredicted times throughout each month, I realized that my mental abilities and behavior was a little off. This is difficult to describe, and I certainly could not have done this years ago as it was occurring. It was not until last year (after I diagnosed myself, of course) that I was formally and medically diagnosed with a severe case of PMS called PMDD (Premenstrual Dysphoric Disorder). In laymen’s terms…PMS on Steroids!

In contrast to PMS, the best way to describe PMDD is that it is similar to Bipolar Disorder in which there are severe oscillations in moods and behaviors. However, for women that have PMDD, moods are initially controlled by our menstrual cycle (thus, female hormones) rather than our brains. Of course, the sudden surge of hormonal chemicals severely affect the brain, but the mechanism begins in conjunction to “the menstrual cycle”. So, in other words unless something is occurring in your ovaries such as ovulation and/or menses, you are 100% free of these debilitating symptoms.

Sadly, I would guess that over 90% of the medically certified specialists out there do not even understand nor regard this debilitating disease. (Trust me, I’ve been seen by too many to count!) And it was not until the 5th Edition of the Diagnostic & Statistical Manual of Mental Disorders (DSM-V 5) did this become a validated disorder.

Here are common symptoms that I have experienced with PMDD (which vary from patient to patient):

  • Severe Brain Fog (The best way to describe this is…imagine someone ripping you out of a dead sleep at 3 am and feeling like THAT for the next 2 weeks.)
  • Difficulty performing routine tasks.
  • An overwhelming sense of hopelessness.
  • Insomnia at night. Severe fatigue by day.
  • Bouts of severe anxiety and/or depression.
  • A severe sense of irritability, sensitivity, and confusion.
  • All the normal PMS symptoms as well (bloating, cravings, headaches, fatigue, etc.)

While endometriosis affects me physically several days of each month, my PMDD symptoms occur intermittently, during the 2nd half of my menstrual cycle. You can do the math here. It’s a lot of time each month to feel pain and far from your best. I am honestly not even sure how I was able to last in my career for 17 years. From what I have learned by trial and painful error is that stress and non-flexibility exacerbates these symptoms even more.

People ask me why I went from teaching (a job that I loved) to school administrator. I knew that an administrative position would provide more stability, flexibility, and alone time to spare me the embarrassment and inconvenience of getting sick and feeling stuck in a classroom. Once I began working as a school administrator I realized that I loved it just as much as I loved teaching students. I certainly did have a little more flexibility and the ability to retreat to my office and work in isolation when I felt sick. But once again, my health deteriorated over time. I lost an administrative job that I loved due to the consequences of Endometriosis, PMDD, and unfortunately several other illnesses that erupted in just 1 year.

Undoubtedly, the Endometriosis and PMDD have caused the most havoc in my life, disrupting my vocation, my relationships, and even some choices I made in my life. The year 2012 was the most difficult year, health-wise, and a story in itself that I shall write about later. But, looking back now, I am stunned that I have gone through this and didn’t even stop to think that this was a medical issue that needed desperate attention. I was remarried, and maintained a comfortable life-style, and miraculously, I was doing very well at work. But, the reality was that I pushed myself so much to keep up with work that I sacrificed time and energy to take care of myself, my home, and my marriage. It is only now that I realize that I was more concerned with coming off 100% healthy and normal (just like stuffing cotton balls in my bra) and forcing something rather than just letting go, letting it happen, and trusting God to work it all out together for good!  

As a result of my recurring ignorance, I only realize now that I had sabotaged relationships in the past, pushed my body to take on the stress and the demands of a full time, non-flexible work schedule that my body could not handle; and even forced infertility treatments that would produce more damage than a single result. I could not bring myself to say “No”, “I can’t right now”, or “Maybe it’s just not meant for me.” Who wants to say that they can’t do it? I didn’t want to accept my circumstances when God blessed me with a few extra years of perfect health back when I was a complaining, flat-chested, and ignorant child.

There is a very valuable lesson that I have learned and a message I’d like to share that goes far beyond the gory details of my health experiences and sufferings…

God has a plan for me, and He has a plan for you, too. (Jeremiah 29:11 tells us this.) God does not cause nor want us to suffer. Rather, God works all things together for good to those who love Him. (Romans 8:28)

In spite of my sufferings and the chaos that occurred, I am 100% convinced that God has blessed me and others through all of this. (Maybe one person reading this right now, can at least identify to some of this and obtain a little validation or direction.)

James 1:2-4 says, “Consider it all joy…when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.  Romans 5:3-5 states, “…we glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does NOT put us to shame, because God’s love has been poured into our hearts through the Holy Spirit, who has been given to us.

I was an impatient and stubborn child. And, I am still working on my impatience and stubbornness. However, by the grace of God (and in the HARD lessons I learned in the year 2012), I have come such a long way. I don’t try to rush God into giving me what I want, anymore. I yield to His timing, His plans, and His ways. He certainly knows me better than I know myself and what my future holds.

I am often asked why I talk about God and my faith. Some people refer to me as a “religious person” and that I love going to church. This is not entirely correct. I am not religious at all. And, I don’t love going to church. I love God because I know that He loves me more than I can ever comprehend. I am grateful for the way He is shaping my life and lovingly teaching me faith in Him throughout the good times and my suffering times.

I am currently not working in the profession that I loved and was trained for, but I am writing on a daily basis.  I went through an awful divorce, but I am happily married and grateful for this amazing love affair that God blessed me with (my second chance). And, I am 100% ok with trusting that God has extraordinary plans for me and my “family”.

I wouldn’t trade my illness or my past in any way, shape, or form. My illness has humbled me. It has helped me to appreciate the beautiful, authentic, and time-savoring blessings in this world such as cooking and sitting on my sun-lit porch (in our temporary, cozy condo). And, how much I enjoy writing. It’s something that I can do wherever, whenever, and however I am feeling.

If LE Woman is by itself the only reason why God allowed me so many years of suffering, I am grateful for that.

Are you currently suffering, waiting, or feeling lost at sea? Have you thought about asking God to reveal what He wants for you? Do you trust in His promise to work all things together for your good? Would you consider asking Him to reveal anything that He wants to accomplish in your life in spite of your circumstances? Is it Patience? Is it Character? Is it Hope? Is it Faith?

God loves you more than anyone in this world. I pray that you will trust Him. I pray that you will be blessed in reading this, today.

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17 comments

  1. I don’t think I’ve ever been moved to tears by an article before… But nearly start to finish, this article is me. I was a late bloomer (nearly 16 when I started my period and finally got boobs) but I was having cramps and pain years before I started. Around 13 the pain started and everyone would write me off. They started me on birth control and gave me some pain killers and told me to suck it up.
    Fortunately I haven’t had reproduction issues, I have two strapping boys, but my heart bleeds for those who are having trouble. That’s the only difference for me.
    At 20, I hit the floor one day in horrible pain that happened so suddenly when I was stepping over a baby gate. It was concluded that I had a cyst on my ovary that had burst and scarring showed that it definitely wasn’t the first one I had endured. The doctors sympathized but told me despite their efforts or treatment, unless I wanted the ovaries removed, it was something I was going to live with. So I have. I know now when it is happening and I try not to make a big deal about it anymore. Sometimes I almost pass out but so far the cyst burstings haven’t damaged my quality of life.
    I was diagnosed with endometriosis after my second son at age 23 (they let me suffer for three months before acknowledging that something was wrong) and once again treated it with birth control. It was briefly effective but I seem to suffer complications later when I take birth control and have to come back off it. Now I suffer with large clots and violent menses that ruins clothes despite my best efforts. I know which days to try to stay home now.
    At 28, I developed a growth in my bellybutton that was painful and kept getting bigger. One day it started bleeding. So I went to the hospital. They were sure it was a boil or some condition from not cleaning my navel appropriately (so insulting! I’m a clean individual!!) and they slapped a band-aid on it and told me to go home. Long story short, it’s a condition called umbilical endometriosis and I had a surgery the summer I was 29. The growth returned last summer and I scheduled another surgery for fall of 2016, this time for a more invasive surgery in which they had to reconstruct my navel altogether.
    As for the emotional roller-coaster I’ve been on since 13, I have been diagnosed with depression and anxiety. Off and on for years, we’ve tried different medications. They never work for long or they make me worse. I’ve been off everything for two years now and I’m not going back because I know they’re wrong.
    Thank you for your article.
    I finally feel like I’m not crazy.
    I finally don’t feel alone.
    Thank you.

  2. Hello. My name is Stephanie, I also have Endometriosis and PMDD. Tomorrow the 27th of November I have a consultation for a hysterectomy + ovary removal. I am 24 years old. I would love to get in contact with you. Can you email me? S_hawkey@icloud.com

  3. Sharina Brooka

    Hi Rachel im 21 and believe I have endo im terrified can I email you

  4. When I first got married in 2000, I couldn’t wait to start a family. That’s all I ever wanted to be was a wife and a mother. After years of unsuccessful IVF treatments, 5 to be exact, I decided that I could no longer go thru the emotional rollercoaster of IVF anymore. Then 4 years ago my mother was diagnosed with lung cancer and it looked like she was going to pull thru. Most of you don’t know me so you don’t know that my mother has been my best friend my entire life. She moved in with my husband and I and I have never been away from her. I decided that after she recovered from the surgery that I would start the IVF process once again. But, she didnt get better and she passed away unexpectedly in 2009 from cardiac arrest while I was home alone with her and witnessed the whole thing.
    Rachel knows that I am not an overly religious person but I do believe in God. I like to say that I have come to terms with the fact that I will never be a mother. We looked into adoption and we cannot afford that and we looked into being foster parents but here they believe birth parents should be involved and that isnt something that I want to do.
    So have I comes to terms with this? No I dont think that I have. I see and hear stories on the news about people abusing and killing children and I ask “why” “why can these people have children and I cant” Truth is, I don’t know that answer to this. Sometimes I think that it never happened for me because God knew my mom wouldnt be around to help me become the kind of mother that she was and maybe He knew that I couldnt handle it without her. I don’t know! Whatever the reason I suppose that I will have that answer when I get to Heaven.(God willing)
    Thanks for listening!
    Love,
    Lisa

    • Oh, wow. Thank you for your sharing your story, Lisa. I love your honesty! I am glad that I have beautiful memories of your mom. I know that YOU were her best friend, too. Li, I know that God has created you and blessed you as a selfless, caring, and loving daughter. Like you, I do not understand why some of us struggle with things like infertility, losing loved ones, battling illnesses, etc. But I agree with your thoughts…that God knows us better than we know ourselves…because He holds our future in His hands. And He is working out His best for us because He loves us!

      I copied this bible verse down recently. I think it is very profound. James 1:27 says “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress…” You have always been a giver and you certainly took care of your mom just like one would care for an orphan or widow – and so, I hope you have a peace in your heart KNOWING that you will see your mom again. And while you are living, I know that there are many “others” that will be blessed by knowing you. I certainly am blessed by knowing you. xoxo

      • Thank you Rachel. It does give me some peace to know that I will see her again. She was so amazing and I still cannot believe that she is gone. I still cry over her loss because it has left such a hole in my heart. It also gives me comfort to know that even after all the years and distance that we are still friends and I will be forever grateful for that! <3

  5. Rae ~ Wow! Thank you so much for sharing this journey. It has given me insight into a struggle I have not personally known, yet, I know struggle. And the encouragement regarding how you can see your trials with new eyes and God’s heart is rich….makes me thankful for what He does in hardships – loves us… carries us… refines us…even when we don’t “get what’s going on”. I so appreciate your sharing this. Keep going 🙂

    • I’m so glad you were encouraged by my post, Nat! You’ve encouraged me so many times. Did you see that I posted the book you gave me, Everything, on my Good Reads List? Thanks for the prayers and support. I am so excited to see what God is doing for us all! Love you!

  6. You are truly an inspiration Rachel! I too have felt like someone lost at sea. I truly believe I am where I’m at in life today because of God’s plan for me. I won’t let him down!!!

    • : ) Well, just remember we ALL let him down from time to time. That’s why it’s so awesome that HE loves us no matter what! If you ever feel lost at sea again, just call me, I can throw you a life-vest…or join you and we can just make the most of it basking in the sun!?

  7. Way to go Rachel! It’s takes a lot of courage to be vulnerable and share all that you have been through! You are truly an inspiration and I KNOW God is using your story to help and encourage others!!

    • Thank you, Lisa! This means so much, coming from you. I see that you also have a blog. I’d like to check it out. Perhaps we can share contributions!? : )

  8. Rachel,
    This is so well written and I have to say that it brought me to tears. But I cannot understand why you or anyone else who suffers about anything in life suffers in silence. That to me is what friends are for. To listen, to hug, to help,to just be there. Maybe that is why you have started this website. To tell people what is going on. I hope that this is the case. You and I have literally known each other all our lives and it pains me to know that you have been suffering like this yet felt it neccessary to “put on a front”. Your trid and true friends do not need you to do this. We want to help in any way even if it just an ear to listen to you vent!
    I already love this site and will be a frequent contributor…welll maybe!!! LOL
    But I will be a frequent visitor here anyway.
    Just remember what in fact it means to be friends…..Friends don’t need you to sugarcoat anything!
    With that being said, I am done for now! I love you and I am PROUD to call you my friend!!
    Love,
    Lisa

    • Wow, Li. I was not expecting this. I completely know and trust that I can talk to you about anything! I have done that before and I will never forget how you encouraged me when I visited you in Boston. I think you are an amazing friend, and I am PROUD to be yours!

      The good news is that I have experienced so much healing the past several months. This is probably why I am eager to talk about my story and hopefully encourage others to have hope!

      I would LOVE to have you read my stories and/or contribute, as well. I believe there is a NEED for women to come together and share their real stories. I truly believe that I am living extra-ordinarily. Not a perfect life. And certainly not “usual”. It’s EXTRA ordinary. And that’s how I want to encourage others to live.

      PLEASE let me know ANY ideas you have to help me make these stories reach the hearts of women. Feel free to pass it on, and thank you for liking it on Facebook.

      Love you,
      Rach xoxo

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