Monday, May 25, 2020
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When You Feel Like Your World Has Fallen Apart

Hi everyone! I’m Rachel and I fight Endometriosis.  As a new Power Writer for FLAGC I thought I would just do an introduction and tell you my story so you can get to know me a little 🙂

At age 12 I started having horrible stomach pain to the point I could be walking and suddenly drop to my knees. My mom took me to my pediatrician and she couldn’t find anything so I went on ignoring it until after a few months it went away. When I was 16, I started having the pains once again.  At this point I was finishing up my senior year of high school. My mom had just been through a thyroid storm that had lasted over a year, nearly killing her and she was still recovering. For several months I ignored it and played it down to my family.  At first it was something I felt I could handle. I figured I would just ignore it and it would go away. It didn’t and swiftly got worse. It got to the point that it would hit me so hard I would be down on my knees. My mom took me back to my pediatrician who ran test after test on me and couldn’t find anything.

For several months I had one test at least every two weeks and ended up in the ER every weekend because the pain would be so bad. My pediatrician couldn’t find anything and ended up saying it was all in my head.  I was 17 and in my first semester of college. I felt like I was going crazy because I couldn’t explain how bad the pain was and every test they tried came back clear. One weekend I was at home babysitting my two younger brothers who were 14 and 3 at the time. I went to the bathroom because I felt sick and before I knew it I was flat on the floor. The pain was the worse it had ever been and I couldn’t move, couldn’t breathe and couldn’t speak. I could hear my brothers in the living room playing and all I could think was God, please help me. I had the phone with me and after the pain intensity let up enough that I could move some, I called my mom and sobbed begging her to help me. She was on her way home but still about 10 minutes away. My aunt and uncle lived down the road from us, she called them and they came within the next 5 minutes. When they got there I was still in the bathroom floor not able to move. They got me up into a sitting position and by this time the pain started to ease. They took me to the couch and my mom arrived soon after. She convinced me to go to the hospital because she was worried I might have an ovarian cyst. I went upstairs and as I started to change clothes it hit again. My mom and aunt ended up dressing me and my dad carried me to the car.

Once at the ER the same thing as always happened, they gave me an IV of pain medication and were sending me home. I and my mom were both in tears from the frustration and feeling like no one was listening. One of my nurses (who was actually a guy) talked to my mom after the doctor went out and asked if I had ever been checked by an OB/GYN doctor. I hadn’t of course and so the next week I had my first visit with my mom’s. She is the doctor that had delivered my youngest brother and she is a complete God send in my life! One visit and she told me what was wrong. Endometriosis. She gave me my options; medication, hormone therapy or surgery.  I decided to try medication and hormone therapy first. I have found I have a VERY hard time with both. My body can’t handle them and when I’m on them my family can’t handle me 🙂

I’ve been through eight different kinds and I can’t handle any of them for more than a few months. So three months after my first visit to her, August 09 I had my first laparoscopy. They removed Endometriosis and several cysts. After that I was pain free for a year and it then in the fall of 2010 the pain came back worse than ever. I had another surgery and went back on hormone therapy. The surgery of December 2010 was a lot longer, and more difficult than my doctor had thought it would be. She found a lot more then she thought she would, and she also had to remove a cyst that had completely encased my left ovary. She had my appendix removed as a precaution because she was afraid that it would become inflamed and burst just because I’m so used to dealing with the pain.  The recovery was long and with more complications. By the time I went back for my post 6 week check up the pain was back just as much as before the surgery. Needless to say I was extremely frustrated and pretty depressed. My mom had been talking to a lady that told us about an endometriosis specialist in Memphis, TN and suggested I go to get a second opinion. My mom called and had all my information faxed and the next weekend we spent driving to see the doctor.

To keep this post from going on forever and turning into a novel, the outcome of the appointment  was him looking over my case and telling me there was nothing he could do. I cried. He said he had seen a lot of doctor’s notes but mine was by far the best he’d ever seen. I am very blessed to have a doctor who cares about me and takes good care of me like mine does.

So I’ve been off and on hormone therapy until about three months ago.  I go back this week to see what to try next. It’s so frustrating sometimes because you feel like no one understands. Endometriosis affects you physically and emotionally. I’ve found that sometimes it takes a lot of strength to get out of bed in the mornings and face the day. The greatest thing is knowing you are NOT alone!! There are other women out there just like you that face the daily battles that no one else can see or understand.  I have a great family and great friends who are all very supportive but in the end no one but someone who has been there can know what you’re feeling. This disease wears your body down and it can wear your emotions down too. I’ve cried many tears over just the feeling of loneliness and feeling like no one understands.  Sometimes I get down and depressed because I feel like I’m young and I shouldn’t be worrying about how every little move I make will affect me.  Then I tend to beat myself up for getting down and out about it because I know I also have a lot to be thankful for.  Am I the only one that does that?

If not, then I want you to know that you are never alone. There is someone who knows what you’re going through and you don’t have to face this fight, trying to be brave, and facing another day alone.

Until next time my fellow fighters,

Much love and pain free wishes!

Rachel

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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27 comments

  1. Just wanted to say…great article..from a great fighter! We’re behind you all the way! Love you and am so proud of you.

  2. my daughter is going thru the same thing with all the pain but no meds ,now they are talking surgery she is only 27 any suggestions

    • She should get a second opinion on surgery, because a lot of times, it’ll come back worse than before.

    • @ marry IliffI found the best way to control the pain is to have the surgery and then go on birth control or some kind of hormone therapy as soon as you go back for your one week check up. I just went back today and will have my third surgery in December. Everyone responds to the medication and the hormone therapy different. I can’t tolerate it but I know women that have been on it for years. The best thing to do is for her to seriously talk to her doctor. If she isn’t happy or comfortable with the one she has now, check around. Find someone who is recommended and that she feels like listens to her and feels the most comfortable with. When she tries the birth control or the hormone therapy and finds she may not be able to tolerate one, keep trying! I have a drawer full! I’m one of the unlucky people who’s body just rejects the hormone given to me, but like I said not everyone is that way. If you or your daughter has any more questions please feel free to let me know, either here via FLAGC or e-mail 🙂

  3. I’ve went through the same exact things you have with this stuff, and it’s horrible to have to deal with. I’ve had endometriosis removed three times, and I’ve had a partial hysterectomy, which they left both of my ovaries, but then two years ago, I had to have my right ovary removed, and still hurt where it used to be, I don’t know if it’s endometriosis, or what. I hope it gets better for you! I can def say, I feel your pain…

    • @ Kristy WomackI’m so sorry you have to deal with that! I will now be having my third surgery in December, just found out today. I hope it gets better for you as well and keep me updated on how your doing! ♥

      • Thank you! I will def keep you updated. I’m 32, I was 24 when I had the partial hysterectomy, so I was lucky to have the two boys I have, Dawson 12, and Devin 10 and will be 11 soon! Heating pads, and laying on your side a pillow tucked under your side, does wonders! It’ll get better for you! I’m glad your a strong woman, and you’re not giving up!! (((( Hugs))))

  4. I know how you feel. I battled it since I was 12 and I was blessed to have 3 children and when I was 32 I had a radical hystorectomy..In surgery for 4 1/2 hours. 2 years ago I had to have my gallbladder out and it had everything up there webbed together…I still have pain on my left side where it had my bowel and ovary webbed together….God Bless each and everyone of you!!! I know the pain…

    • Oh wow bless your heart! I know it’s been a long journey for you and I have to say I’m thrilled at the fact you have three children! I know that is such a blessing!
      The pain that’s left after surgery I completely understand. I know it’s not an easy thing and sometimes when the pain doesn’t stop it gets discouraging. God Bless you! I’ll be sending pain free wishes your way!

  5. I also suffer from Endometriosis. I recently had the Nova Sure procedure, and not only has it helped me, but i no longer suffer from extremely heavy periods…in fact, I have not had one at all since June when I had the surgery 🙂 The only downfall is that I find that intercourse is still severly painful. I am working on an appotinment with my DR to see whats up with that….is was a horrible sypmtom before, and hopefully it will get better.

    • @ Nikki WoW! That’s amazing! Well except for the one downfall but I’ll be sending well wishes your way hoping your doctor will be able to help you with that!
      I’m not married, and I don’t have children so I haven’t had anything done that would hurt my chances of being able to do so since the Endo can prevent that as well. But thank you for sharing that I’m sure there are others that would like to know about it!

  6. I strongly recommend the Nova Sure procedure…unless you havent had any children yet and are planning on doing so. With this procedure, it is not a possiblilty afterwards.

  7. I just wanted to say I think your article is wonderful.

  8. Hi Rachel! My heart goes out to you. You’ve dealt with a tremendous amount of pain for far too long! I’m a Registered Nurse and I work in Women’s services, would like to share your story with the Chief of OB/GYN @ my hospital. He’s helped several women using the Da Vinci Robotic surgical system on Women/young ladies much like yourself. Difficullt cases he handle. He’s so good that he actually proctors in surrounding cities/states on the surgery system. If interested feel free to email me! I wish you the best! 🙂

  9. Hi Rachel i to suffer from endometriosis i was diganosed with it back in 2008 which my gyn had to go in and burn it out, it was growing in behind my uterus he did tell me that eventually i would need a complete hysterectomy.I have pain during my menstrual cycle and my left ovary gives me a fit.Endometriosis has affected me bad i do not feel like a whole woman anymore,i feel useless to my husband and feel like i can’t be myself with endometriosis i know how you feel and what you are/have been going through.

    • @ Heather I’m so sorry you have to go through this! Not feeling like a whole woman or useless is completely understandable. Not feeling like yourself because of the endo is something I deal with a lot. You feel like you can’t be the person you need to be for the people around you because your so caught up in making it through day to day life. But just because you feel this way sometimes doesnt’ mean it’s true because it’s not! You are no less of a woman, you are in fact a very strong women to because you get up and face every day. You are a very whole very strong woman and my heart goes out to you. Keep fighting and keep facing every day and remember your so much stronger then you know!

  10. Rachel,
    First I want to say that it is scary that we are both Rachel (eal) ‘s. Reading your story made me tear up. Why you may ask?. You and I have exactly the same problem. I went four years with no diagnosis ( I am currently 23) and all the doctors told me nothing was wrong and it was in my head. After four years of doctors and ER visit’s, I finally got a referral! As soon as i walked in the room and sat down he diagnosed me. I was in surgery 5 days later. Here’s my problem now, it did work and i’m worse off then before and the meds. are not working. Thanks for sharing your story it does make me feel a little better knowing its not just me. And the Emotional and depression is def. a big thing for me as well, its a fight EVERY DAY!

    • Racheal! My heart goes out to you! You definitely aren’t alone and not the only one who has to fight not only the physical fight but the emotional fight as well. We’re all in this together and we are here to support each other. Please feel free to e-mail me if you ever need to talk 🙂 I’m here to support and encourage. I know it feels like there is no light at the end of the tunnel but just keep your head up and keep fighting! HUGS!♥

  11. Thanks for posting your article, as much as I hate to see another woman in pain, it is nice to know I’m not alone. I also went many years undiagnosed with Endo. I didn’t find out until I was 28, and after I had my first child. A few surgery’s and a partial hysterectomy later and I’m still in pain. It’s so hard to deal with when your in pain and no one around you really understands. I hope someday they find some cure for all of us!

    • Amen to that! My doctor has been studying on it for years and at my last visit she said “I wish I could find a cure so much then I could retire!” I wish someone would! In the mean time while we wait for someone to find that cure we will all stick together! You are not alone and never will be! Sending pain free wishes to you! Keep fighting!

  12. hi im 20 and ive been suffering with endo for going on 1 yr maybe more. first its was ovarian cyst now its endo .i had my first lap this year 4 days before my birthday. im coming up to my last treatment injection in this course of hormones with no relief and before surgery i was on birth-control with no help. i have pain for about 3 weeks a month. i wanted to say thank you there is nothing u said in the 2nd last paragraph that i don’t feel … ive lost friends and im unable to work but im trying to be strong.
    All the Best to you!

    • I am so sorry! I wish I could give you a hug! I know exactly how you feel and it’s so hard when nothing works. I’m so sorry that you’ve lost a friend. When I was first diagnosed right before my first surgery I had a guy tell me he didn’t want to get close to me even as just a friend because he didn’t want to be with someone who was sick. That was really hard and I took it really hard but in the long run I’ve found that only true friends are going to stick with you through it. They might not understand but they still stick with you. I know how hard it is to work. I haven’t worked since July and have been going to college full time. I know how hard it is to drag yourself up when you would really rather lay in bed all day. It’s hard and it hurts because bosses and teachers aren’t always that understanding.
      You are strong!! Getting up and facing each day shows how strong you are! You aren’t alone in this battle and never will be regardless of how much it feels like it. Sending best wishes, pain free days and hugs to you!

  13. Rachel, blessings unto you. You are goin to be an awesome writer here for FLAGC. My article was recently featured as one of the power stories on here, and i am amazed at how many suffer from this horrible disease. Many may not have gone through it as bad as others but just being diagnose with it is painful enough. Thanks for being a voice and a writer. I hope to be travel and speak more on this horrific disease and be a voice for the endo fighters. God bless you

    • Thank you so much! Thank you for the support so much and I hope you do get to travel and speak. I believe the awareness for this disease needs to be pushed more then it has been in the past. God bless you! Keep fighting!

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