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Tatum’s Story (Endometriosis)

Tatum's Story EndometriosisHi there, my name is Tatum, I was born in 1990.

My journey started when I was 9 years old, my first ever period. I hardly knew what periods were so I assumed the immense bleeding and pain were all normal. My mother watched me over time, taking days off school, crying, unable to move due to blood flow etc. She knew it wasn’t right, so after about a year she took me to my local doctor. For the next year or so I heard, “she’s getting use to it, having her period
so young”. I was about 11/12 when they decided to try me on numerous Birth Control Pills, nothing worked. So at around 14 I was sent to my first gynecologist, who tried one more BCP before placing me on the Depo provera Shot. I was on this for three years, many hiccups during this time but I did have one pain free year! In the end, I was having the shot every 1 to 1 ½ months, then my bone density dropped. I was immediately taken off it. One more trial of the birth control pill and I stopped having hope I would never know what was going on.

The words “Endometriosis” and “Adenomyosis” were thrown around – along with “having surgery won’t fix these issues though” and “she’s too young”. Maybe I was, maybe they wouldn’t help, but I was willing to try, I begged to try! I was 18 with no idea where I was going with my health.

I moved out of home in the year of 2009 – off to University to become a primary school teacher. I begged every month for my mum to let me have a hysterectomy so my pain would go away. Realistically, no doctor would even think of it, but I was willing to do anything. The end of 2009 I moved to the States where my boyfriend and his family are from and currently live also. Unable to watch the pain I endured monthly, he went in search of the best doctor out there. He did not disappoint, finding a Professor!

He advised me to seek a local Gynecologist and start from there (I went to the top without working my way up to him). So I did, I found one close to home and had my first Laparoscopy in February 2010 – my diagnosis was endometriosis, stage 1 (minimal). I had it lasered off through surgery and was then placed on progesterone pills. They did not work. My Gynecologist honestly told me he had no idea how to help, so I went back to my Professor who sent me to one of his specialist doctors. I had my 2nd Laparoscopy in July of 2010 – more Endometriosis was found – more extensively this time – and it was excised. My pain did not cease and it was evident that hormones would not work. Unsure of what to do and my pain rapidly increasing I had my 3rd surgery in January 2011, adhesions, a cyst removed from my right femoral artery and you guessed it – more extensive Endometriosis. My pictures astound me and, honestly, make me emotional.

So where am I now? I’m currently 20 years old. My previous doctor (who did surgery 2 and 3) has given up on me. My newfound and God-send doctor is going to do my 4th surgery in 14 months on April 6th, 2011. He believes there’s a lot more going on than I am aware of or that was ever known about. It truly is one day at a time with a disease so unpredictable and rampid like this. It will be 12 years this year and I’m only just coming to terms with what this disease does, what it means, and what it takes. It’s shown me my true friends and family. It’s taken my “younger years” from me. It’s important to never give up though – there is an end to the road and there is a light at the end of the tunnel. We will find a cure, together!

I’m so glad my parents and my boyfriend stand strong beside me. I can’t even begin to think how this makes them feel. I’ll fight, if not for me, for them. More than you hurts in this journey, the ones you love hurt too.

My dream: to find a cure in my lifetime.

I hope it’s your dream too.

Submitted 3-18-2011

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Tate

    Hi all, this is my story – just to clear up I did not move to the states I moved interstate (to another state in Australia).

    Also, an update from surgery, I have stage 4-5 Endometriosis now along with Adenomyosis and I also get cysts (so far tubes and femoral artery) – they’ve placed in Mirena to try and help with the Adenomyosis but I’ve been told there’s not much else can be done now. It’s a wait and see game as to when the Endometriosis will come back due to it’s severity, and inevitably I will need a hysterectomy for the Adenomyosis.

    Thanks for sharing my story =)
    I still hope to find a cure in my life!

    • Chassidy

      Hi Tatum,

      I have a question, my Doctor here in the US told me that I had stage 4-5 endo as wel, but other groups have told me there is no such thing as stage 5. Do you know what the difference is in 4 or 5. All I know is that I have had a complete hystorectomy over a year ago and the pain never went away. I am in pain 24/7/365 and I have to live off of pain killers just to get through a day, do you have to take pain killers everyday as well?

      Thank you,

      • Tate

        Yes I do! Without fail everyday I am in pain and exhausted but I thank the Lord when I can get through a day, as I know tomorrow could be worse.
        I never knew such thing as a stage 5 untill I saw my new doctor who showed me pictures from stage 1-5.
        From what I can gather 5 is new, it’s the pinicle of a complete mess.
        To my eye, I don’t see a huge difference between the two but I think the doctors have a better understanding of what 5 is. I’d deffinately ask your doctor for some clarification if you want! From my understanding thats the difference (very little at all).

        I will eventually get a hysterectomy but I want to *try* to have my own children first!

  2. Ashley Nicole


    You are such and amazing woman! I cant thank you enough for all that you have done to help my site grow. Thank you for being such a great friend, I keep you in my prayers every night. <3 your endo sister

  3. Chassidy

    thanks for the info Tate, I am glad I am not the only one who has to live off of them – but Im so scared that they will cause damage to other organs – do you ever feel that way? Also how long have you had to be on pain killers and what do they have you on, do you still get break through pain? Im on 120 mg of oxycotin a day and Soma (dont know how much) and I still have break through pain – UGH any advise would be great thanks Tate.

    • Tate

      I’ve been on painkillers for years, I take a mixture of inbuprophen, tramadol and endone (morphine).
      I do worry about my other organs but right now I don’t have any other choice =(

      My best advice, only do what you can, rest when you need to, take time out when you have to, do whatever you have to to make things easier. I find I have to adapt, while I swore endo would never control me I can’t run away from the fact it’s a massive part of my life now.

      I hope this helps abit, keep strong, listen to your body and never never give up fighting *hugs*

  4. Lynette

    I can so relate to this. I got my first one on my 10th birthday. I was in so much pain for years that I dreaded this every month. It wasn’t until I was trying to get pregnant that it was discovered I had endometreosis. I suffered for years with this & didn’t even know it. I just figured it was normal. I had a surgery & it was a godsend. I hope your surgery works for you.

  5. holly

    I too have battle with endo for years. I was taking pain pill after pill to to get away from the pain. Then I found this amazing dr who helped me though it. We tried BC when that did work so after my 3 surgey my dr put me in a medcail indosed menopause for a year. After that we tried to get pregnant. And after 1 and 1/2 of trying to get pregant we tried IvF 3 times all with no luck. we took a year off and looked at our life and what we needed to do. I sat done with family, friends and other women with endo and decied to do a total hysterectomy. We now have two boys that we adopted though foster care. My point is life is full of decision take your time be sure about your decision because in this case you can not take it back. I tell family and friends that i would not change my life all the pain and everything that i went though has made me a better person, wife, and mother. And I’m sure everything you are going though make you a better person. Remember you are strong and brave.

  6. Crystal

    I know what your going through. It’s going on 15 years for me I have a strong family who helps me deal with it. Im glad that you have a great boyfriend and family that stand by your side. I hope that you find a waynto manage your pain and get some relief. Hugs to you for being a strong woman.

  7. Lindsey

    I too started my period at a very young age (10). I always bled heavy and always felt so sick to the point of passing out when I would start a period. I went 12 years thinking this was normal until I had my first daughter at the age 19. I started to experience abnormal bleeding and more pain. I would have periods 18 days apart (so two a month). I started to talk to my doctor about my symptoms, and we talked about possibilities. I was sent to a gynocologist who told me I do not have endometriosis, and all I need is an IUD placed and it will make my life so much better! Boy was she wrong!! It was the most painful experience I had. Finally I was approved for another insurance and I went to my doctor I see now. He knew exactly what was wrong just from hearing my past. Even before doing surgery to conferm his beliefs, he said he was 95% sure I had endometriosis. So two week later I went in for a laperoscopy. I was told there was significant amounts of endo on my uterus and various other places. I recovered from that surgery and then went back to see my doctor still complaining of pain. He then sent me to see a Urologist. I was back in surgery a month later to have a cystoscopy done. I found out that I have interstitial cystitis as well. It’s called the “evil twin” of endometriosis. What do you know, of course I have them both! It’s been about a year in a half now and I’m still experiencing pain. My surgeries were done May 2010 & June 2010. I was supposed to go in for a second surgery 4 months after my first one, but lucky me found out I was pregnant with our second child! So surgery was put off. It’s now November 2011 & I found out a few weeks ago that I also have IBS! It’s just never ending. I’m going back in to see my gyno to talk about a second surgery. I hope things go well because I’m tired of living in pain.

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