How Do You Deal with the Lasting Effects of Endometriosis?

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living with endo
I had my life all planned out. I was going to graduate high school, go to pharmacy school, graduate in four years, and then find a job working at a pharmacy that I loved. I wanted to date and get married and start a family, too. All that changed when I was diagnosed with endometriosis; even though I did not know it at the time.

Fast forward six years and I am a completely different person than I ever thought I would be. Before being diagnosed, I never really understood what people with health problems go through. Now, I do and I am more sympathetic and empathetic to those that have chronic illnesses. I know what it feels like to not be able to do all the things you want to do and love.

Tough Choices with Endo

I have chosen not to finish pharmacy school because my body just cannot handle the stress. I did not want to make this decision. My body has already been through so much. I do not want to put it through anything that may cause more harm. This is the only body I have and I want to make the most of it.

Am I mad? Yes! Will I be able to move on? Yes, because I know that there is a great life ahead of me even if it is not what I had initially planned. I was given endometriosis for a reason and I am not going to let it win. I am going to use what I have been through to help others who also suffer with this disease, as well as the other diseases that come along with endometriosis.

With Endometriosis Comes Many Other Diseases

I have been diagnosed with interstitial cystitis, polycystic ovary syndrome, and osteoporosis, in addition to the endometriosis. I had a hysterectomy at the age of 23. I know I can adopt, but that is a very challenging process to go through. This will make having a family difficult, but not impossible. It may seem like I am giving up because I am not pursuing a dream I had, but I am not. When I was fighting for pharmacy school and for my health, I realized that I just did not have it in me to keep fighting for both. I had to choose my health, because if I did not, I felt like my quality of life would be worse than it is now. If I were to continue pharmacy school, I felt like I would not be able to enjoy the experience. So instead, I am using everything in my power to gain awareness for endometriosis. I encourage people to talk about this disease so that one day there will be a cure. I do not want anyone to ever go through the agonizing heartache and pain I have been through.

When I was first diagnosed, I never thought I would be dealing with endometriosis for the rest of my life. I was sure there was a pill that would help end my pain, but sadly, I was mistaken. I continue to pray that I will wake up one day and not be in pain anymore. However, I have come to the realization that I will be in some kind of pain for the rest of my life. I have to find a way to be able to cope with that pain. I know some people do not understand this, but I have become closer with God since all of this has happened. Many people do not like to hear the saying “everything happens for a reason”, but that is what gets me through each day.

How do you deal with your symptoms of endometriosis and what has the disease stolen from you? Share your story here on Hormones Matter.  Write for us and together we can end endometriosis.

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15 Comments

  1. Hi Sam! Thank you for your article. Endometriosis shattered my dreams of ever bearing children of my own.
    I suffered with Endometriosis for many years without even being aware of the condition and was misdiagnosed. I suffered with crippling period pains from the age of 15. I used to get sent home from school and later, work. I thought it was normal. The obgyn I was seeing said at first that I could not fall pregnant because I did not ovulate. When I questioned how it was possible because I get my periods even though it was light and quite erratic, he said it happens. After treatment drugs bore no fruit, he did some tests, but not a scope. he then said I had blocked tubes due to an infection and that I somehow did not know I’d had. He said if I ever felt pregnant, it would be a miracle. I did not like his bedside manners so I switched doctors the following year.
    This doctor did a laparoscopy and found I had endometriosis. It was so bad, that I had chocolate cysts, an inflamed uterus, fybroids, my fillopian tubes were a mas of knots and everything was sticking to my intestines. He had to put me on a cause of Tridamose for 3 months which made me instantly menapausal in an effort to shrink my womb before performing a total hysterectomy.
    I was devastated as I’d always wanted to be a mother. Even though logic tells me otherwise, having my womb removed has made me feel less of a woman….that something vital has been stolen from me.

  2. I really liked this article. I was diagnosed at 27 and am in constant pain. Endo has taken away things I love to do, like running and jogging. I use to run 5 miles a day. I can’t believe that sometimes. I knew something was wrong when I realized how much my pain has taken away from my life. I am much more sympathetic and empathetic too to people with disabilities and chronic illness. It’s as if I see us, and I too am now apart of this club, where we can joke about our horrible illnesses with each other because we understand. I shared your post because my endo too brought me closer with god. From one sister to another I wish you the best of health.

    1. Hi Andrea,

      Thank you so much for sharing your story with me and for sharing my article with others. I am sorry you are suffering with this terrible disease and hope you find some relief soon. I’m so thankful for my Endo Sisters! Sending you hugs.

      1. Samantha…God bless you my endo sister.. I am now 48 and i have had endo for years.. There is a family history of it in my family. I am blessed with a 9 year old daughter who i pray will never have to get this. Im trying everything holiistacally. yoga accunpuncture etc… Bio identical hormones. i am doing the endo diet now. I have to saw its tough. I greatly admire your courage.. You truly are a inspiration to others! Pinterest has some remedies and info on endometriosis also. i will pray for a cure for all of us…. Have you tried lupron? i try to do everything organically… so i wont try it but im wondering if it has helped others.

        1. Hi Denise,

          Thank you so much for your post and for sharing what you are doing to try to get relief. I am praying for you and hope that your daughter does not have endometriosis. I did use Lupron in 2011 and 2013, but suffer horrible side effects from it. I was diagnosed with osteoporosis last year at 24 years old and my doctors are sure it’s because of Lupron.

  3. Samantha, thank you so much for sharing your story! I am 30 years old and got officially diagnosed at age 27 after 6 years of struggling to find an answer as to why I am constantly in pain. I also have PCOS and Interstitial Cystitis. I’ve changed careers and was even unemployed for a while this year. Sometimes I’m scared to death that I won’t be able to support myself because of this disease. Thankfully, I have a hugely supportive husband and family. My husband and I are going to try for a child via IVF and then I will probably be thinking seriously about a hysterectomy, even though I already have Endo on my bladder and it will never really go away. I get through the hard times through my art. I particularly love photography, painting and graphic design. It takes my mind to a happier place and I can forget about the pain for a while.

    Prayers and love to all!

    1. Hi Corey,

      Thank you for your kind words and sharing your story. I hope you find some relief soon and have good luck with IVF. Sending prayers and love your way, too.

  4. I beg you all please look up Dr Rakesh Mangal in Houston TX. Also, Dr Mathias, houston tx as well. They are the closest to a cure you will find. I just had a full hysterectomy and resection of my bowels as well as clean up of all the endometriosis. I was a very severe case. It will not return. However it is linked to other diseases but Dr Mathias is a neurogastro doctor who is helping me through all of those obstacles. Please do not keep going to obgyns who clean it up and say you’ll just need another surgery in the future. This is not true. Please do whatever you can to see Dr Mangal. He is amazing!!!!

    1. I had two surgeries with Dr Mangal and I have to say that I owe him my kids! Without his expertise I would have never been able to get pregnant and have kids and to be pain free for years. I had another surgery this year with a different ending specialist (because I moved to CA) and the new Dr did not find any endo!! All he found were adhesions which were causing me a lot of pain…

      1. Hi Sonia,

        Thank you for sharing your story. I’m glad you were able to find a specialist that was able to help you and you were able to have children.

    2. Hi Joy,

      Thank you for letting us know what works for you. I am glad you have found a doctor that will help and listen to you 🙂

  5. I also had many dreams and then at 16 I was diagnosed with endometriosis. From that point I tried all the medications out their to treat the illness, but nothing really helped. I had a full hysterectomy in my early 20’s, thinking this would cure me. I was wrong because the endometriosis kept returning. I have had about 32 surgeries since I was 16, I am 40 now. I still have endometriosis and now it is on my bladder and I have a few cysts on my pelvis area. I live in chronic pain and I get tired faster. What gets me through is music and my writing. I write song lyrics and poems and it helps me go in my own world and escape the pain a little. I pray for a cure for future generations of women and girls, so they don’t have to endure a life of pain?

    1. Hi Patricia,

      I am so sorry you have been through all of that. I hope you find some relief soon. Thank you for sharing your story. 🙂

  6. Sam – Reading your article was comforting! I was diagnosed with endometriosis at 20 years of age. By the time they diagnosed me, however, I was already in stage 4 and had been struggling for years. I was shocked also. Endo takes such a toll! I do work full-time in a job I (for the most part) enjoy, but it is challenging and I constantly wonder if I may at some point have to give up my career goals. It’s scary and rough. I appreciate you speaking about this.

    1. HI Jessica,

      I am so sorry you have struggled with endometriosis. Thank you for sharing your story and I hope you find some relief soon.

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