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Beth’s Story (Endometriosis)

Beth's Story EndometriosisI’ve battled through depression, and I’ve battled anxiety disorder, featuring panic attacks that can only be described as debilitating. And now I have to fight endometriosis, and I’m tired of fighting what is now a trifecta of “you got to be kidding me.”

I first started having endo pain about 7 years ago, and I ignored it. Told myself it was just a cyst and it would go away on its own. I told my doctor in May I wanted to know what was causing the pain, the fatigue, the bloating, the weight gain, my new weird peeing habits, and the lovely rogue chin hair that just added something real special to the acne problem that greeted me like an old friend from middle school. Needless to say, I felt awful in every way. I got an ultrasound done, and my ovaries looked weird. Neither one looked normal to me. The left looked like an alien and had black spots on it, and the right was this massive gray blur.

I was referred to an obgyn and saw her in August. She sat me down and asked questions, and after every answer she would say things like, “That’s textbook” and “it’s textbook.” Finally, she turned to me and said, “I always tell people I can’t diagnose endometriosis by ultrasound, but in your case, I can.” Yay me, do I get an award for that? Apparently the massive gray blur on my right ovary was so large that it was easily recognized as an endometrioma.

I was scheduled for a laparoscopic procedure for October. That procedure took place 5 days ago. My doctor kept saying beforehand that she didn’t know how bad it was and wouldn’t until she opened me up. She was thinking because every time she felt around she couldn’t feel any scar tissue that it wouldn’t be so bad. My surgery was scheduled to take an hour and a half. It took three. It was everywhere. My uterus decided to be besties with and attach itself to another body part. My bladder had endometriosis on it too. She gave my mom pictures, which are definitely not going out as a Christmas card this year. They’re just not that pretty or festive.

The doctor said it’s stage 3. Today has been really emotional. I’m crying a lot because I feel very alone and scared. I’m single, and no one around me has endometriosis. Part of me wishes I would have sought help when I first started having pain, and maybe it wouldn’t have been so bad. Part of me wishes I didn’t go in. After all, ignorance is bliss. Another part of me wishes I never had the surgery. Living in pain and chronic fatigue is my normal, and I don’t know how to not be that. I don’t have anyone to talk to about this. No one understands. Everywhere I look, people are getting married and having babies. Side note, the irony of having a disease that causes infertility and makes you bloat so much you look pregnant, like seriously, it’s twisted. And worse, you have to see an obgyn. You know who else sees obgyns? Yep, pregnant people, so you’re surrounded. I swear, every time I’ve gone to the doctor’s office, the person in the next room is having an ultrasound and listening to their baby’s heart. Right now. the only thing my bum uterus can create is sacks of fluid. My doctor says if I want to have kids, I will need to get pregnant as soon as I get off birth control because, in general, they don’t want me off it.

I’m sad. I’m having a really hard time wrapping my head around it all. I just want to know I’m not alone, that someone understands.

Beth
Oregon
Submitted 10/27/2015

The informational content of this article 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.

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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5 comments

  1. Brigitte Estelle Gaudreault

    Hi Beth!!

    I am truly sorry that you are going through hell especially being so young ! I love your smile, your strength, your will to fight like a girl !! You should be so proud of yourself and your courage of taking a first step of wanting to reach out and wanting to stop crying and wanting to search for an answer to understand the why and the how come this is in me ?
    You are communicating with a strong club filled with ” HEROES & FIGHTERS “, I say keep writing to others in this great club for encouragement and information!

    You know Beth, keep writing we need more HEROES like you!!

    With love from, Canada, Québec
    Brigitte Estelle xxx

  2. Hi Beth,
    It’s so heartbreaking to read what you’ve been going through. I went through depression, anxiety, and PTSD for the last several years, got better, and then knocked back down again like you with this diagnosis. As you can see from this site you’re not alone. I had no idea this existed until yesterday, but it’s amazing that there is a network out there for women to discuss what they’re going through. All of our pains and problems may be diagnosed the same, but we all have our own story to tell. We all have our own fight to fight, but never alone. I have some family telling me this isn’t life or death (obviously), but neither was getting sexually assaulted…it doesn’t make it any less life altering. Other family members are over the moon with support even though they have no idea what to do to help. It feels like a lonely inner battle, but it can be won.

    Good luck Beth,
    Dianna

  3. HI BETH, PLEASE EMAIL ME…YOU ARE NOT ALONE, I HAVE STAGE 4 ENDO AND I BEEN SUFFERING FOR THE PAST 5 YRS. I WAS A MANAGER FOR SEARS FOR 14 YRS AND HAD TO LEAVE A GREAT CAREER CAUSE OF THE PAIN AND ALL THE BAD SYMPTONS THAT COME WITH IT. I HAD LUPRON, BIRTH CONTROL PILLS, ALSO THE LAPEROSCOPIC SURGERY. I FOUGHT DISABILITY 3 TIMES. THEY THINK WHAT WE HAVE IS NOT SEVERE. THATS BULLSHIT!!!! I CANT LIVE A NORMAL LIFE AND JUST THE PAIN ALONE. LETS ALL FIGHT AND HOPE YOU GET IN CONTACT. thank you, always Anthea

    • Hi Beth!!

      I’m so sad to read your story, but please, please PLEASE know that you’re not alone in this fight! The first few days after surgery are hard, and the realization of what you’ve been diagnosed with is harder, but it IS a good thing that you now know what it is. Don’t harp on yourself for not finding out earlier, either.. unfortunately, what I’ve learned since my diagnosis is that no one really knows ANYTHING about endometriosis, so really there wouldn’t have been any additional benefit (except maybe less time in pain?) had you found out earlier. It’s like a big guessing game of trial & error for all of us.

      No one in my family has ever had this either, so who knows where mine came from, & I don’t know anyone around me who has it, so I belong to a lot of support groups. I also try to be really open about it when talking with people who don’t know anything about endometriosis, because that’s the only way to raise awareness around it.

      I hope you’re recovering well & that this information helps you, even if only a little bit.

  4. Hey!! I understand what you’re going through girl. I also have a terrible debilitating anxiety disorder and depression and getting diagnosed with endo was just the WORST. I only got diagnosed in may… Didn’t officallly get diagnosed until September when I had my first lap. My endo is very severe too and the pain is just too much. My mental state has just been crumbling since this all has been happening. You are so not alone but I feel alone sometimes too. Its lonely and really really difficult but we will find the strength in ourselves. We are warriors!! Feel free to email me WHENEVER. As I said, I feel alone a lot too. We all need to reach out to each other and keep each other strong. This isn’t an easy fight. Lots of love and healing vibes to you!

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