I haven’t had my post-op appointment with my doctor yet. That’s next week. However, I do know some details about what she found while she was peering at my insides.

I know she found endometriosis.

Endometriosis is one of those silent female diseases that mystifies doctors, and is not talked about much in public. Randomly, you will hear endometriosis tossed around when a woman is having difficulty conceiving. “Ooooh, she has endometriosis. She can’t get pregnant!” First of all, many women with endometriosis get pregnant. Secondly, endometriosis can affect fertility, but also a lot more. It has the ability to completely alter your life, your self-esteem, your marriage, etc.
WHY isn’t it talked about earlier? Especially given the fact that more and more women are waiting until their early to mid-30’s to have babies. Also, given the fact that endometriosis can become worse as women age. Why aren’t doctors talking about this with high school and college aged girls?
For a full definition of endometriosis and its symptoms, please go here, or do a word search and you will get thousands of articles.
I had never researched endometriosis until I began googling my menstrual symptoms a couple of years ago. I suffered from bad cramps during my adolescent years. I can distinctly recall a few times where my mom picked me up from school. I sat curled in a ball in the backseat of our minivan writhing in pain. My periods were also often heavy, and sometimes came twice in a 28 day cycle. Throughout the years, I relayed these symptoms to numerous doctors. Each time I was told I should go on birth control. It was a hormonal imbalance. I was also told to physically numb myself with Advil up to two days prior to my period.
Oh, thanks.
I was on and off of birth control for years. I kept going off of it because it made me feel emotionally unstable (a.k.a. psycho bitch), bloated, and I was convinced it gave me UTIs. (The jury is still out on that one.)
HOWEVER, had I been told that maybe I could have this disease called endometriosis; and if I had been told that maybe birth control would help it to go into remission, then just maybe I would’ve faithfully taken birth control, whether or not it made me crazy, bald, or a hundred pounds overweight.
None of my doctors ever talked to me about endometriosis.
As I entered my late 20’s, my periods became almost unbearable. Longtime readers of this blog know this, because I’ve talked about it many times. (Sorry, guys, you have to hear it again.) Heavy to the point of needing to lay in bed for fear of passing out. That is not normal.
My general doctor finally took notice of the fact that I had been coming to her for like seven years with period issues. Instead of trying another round of birth control, she decided to order an ultrasound and then scared me into thinking I had cancer.

Lovely.

The best part of that story is that she is an internist, and had no fucking clue what she was talking about. But, she successfully frightened the shit out of me, and everyone that cares about me.

My main point in sharing all of the gory details (yet again) is to bring home the fact that (a) you are your own best health advocate. If you don’t get the answers you need, hound your doctor or find another one, and (b) endometriosis affects a lot of females from the moment you start your period until menopause.

Young women need to know about this disease before they reach their child-bearing years. Maybe it’s just me, and my story is unique? Maybe most young women know about endo? I don’t know.

In retrospect, I wish I had known about endometriosis ten years ago. I wish I had mentioned it to my doctor. I wish I had been set up with a gynecologist/specialist at age twenty. It isn’t just about fertility. It’s about quality of life! I was getting pretty good healthcare, but it wasn’t good enough. I’m kinda pissed off about this.

Any other endometriosis survivors out there? Know of anyone (friends, sisters, nieces, etc.) with awful periods? Maybe you should tell her about endometiosis. We need to lend our voices to this disease, and open the lines of communication about what can be done.

March 24, 2011

thelessthandomesticgoddess

24 Comments

  1. Reply

    Chic 'n Cheap Living

    March 23, 2011

    Thanks for sharing this. I have a close friend who thought she might have this and that's when I started learning more. Sigh, it is scary how many preventable, dangerous diseases can strike us.

    Let me know if I can help in anyway! Otherwise, hugs always!

    xoxo,
    Chic 'n Cheap Living

  2. Reply

    -J.Darling

    March 23, 2011

    My periods have always been nasty. In fact, even though I'm down to 1 ovary, my body would STLL do it twice a month if I wasn't on BCP. I got on BCP at 19 – yet I wasn't sexually active until I got married at 21. I thought the craps I'd been experiencing all through high school were the "normal" cramps. They weren't. They were always heavy and the pain was nearly debilitating. Don't get me started on the depression… That wasn't from the pill. It was my periods.

    When they did my lap, endo is one of the MANY things they had to clean out. (For those who don't know, this isn't preventable. They don't know why Endo grows. BCPs "may' help, but if you're trying to get pregnant, BCPs are counter productive. Endometriosis is the abnormal growth of endometrial tissue OUTSIDE of where it should be. Causes a lot of pain usually, irregular periods, etc. Sure, BCPs should make your periods regular, but usually you have to take them for 3-4 months before your body accepts the new medicated normal.)

    Here's the good news, after my surgery, I had a lot less pain during my periods and I feel like I've stepped out of a fog and into clarity. (I had other things going on too – premalignant lesions, blah blah blah.) On BCPs, my periods are fairly normal.

    Here's the other news, before I went on BCPs (2 months after surgery), my body was still trying to have 2 cycles/month. While the intense pain was gone and they saw nothing wrong anywhere else, I am back on BCPs to moderate things. I am not sure what will happen when I go off them, but that's a year plus coming right now.

    For those who don't know, I'm 31.

  3. Reply

    thelessthandomesticgoddess

    March 23, 2011

    @J. Darling: Thanks for sharing your story! I didn't know all of the details, like how you suffered from heavy, frequent periods. Ugh. Isn't it horrible?! And, yes, now I'm at the phase where BCPs are VERY counterproductive. Yet, I'm back on them for at least a few months while my body heals.

    I just wish that when I was 18 or 20 or 22 or 24…some doctor had told me about endometriosis. I also wish they had been more firm about me staying on BCPs, because I had no intention of having babies at those ages.

    I am happy to hear that you've experienced relief after your surgery. That's a very good thing.

  4. Reply

    megan

    March 23, 2011

    Carly, thank you for this. I have been telling my OB/GYN for YEARS (I have had her since I was 16!) that my periods are so heavy I have to wear a super tampon AND a pad. My cramps are so horrible they make me puke. I want to die. Even my husband knows when it's that time of the month to cancel all plans. I've missed weddings, engagement parties, even a baby shower from the pain. She continues to tell me it's fine, this is "normal" and that I have nothing to worry about. I believed her until I read your post. Thank you so much for this. I'm going to tell her to Eff off (sorry for the language) and get a new doc and hound them until the cows come home. Thank you. I mean that.

    And sorry to be all graphic and stuff. <3

  5. Reply

    Lisa

    March 23, 2011

    I have suspected I might have endometriosis for a few years. I have found a bc method that works well for me. The pill made me crazy (I have depression anyways), but if I am off bc I have horrendous periods. I have an iud now and it is amazing, but I need to bring it up with my obgyn this year. My grandma had really bad endomedtriosis in her 40s and had to have a hysterectomy. She told me the whole story, that was when I first heard about it actually.

  6. Reply

    hemborgwife

    March 23, 2011

    My mother has had quite a few surgeries from endometrosis in her 20's (she is a nurse so she was aware of what was going on), but she also had two wonderful childern after them (not me, my brothers!)after them. She was 18 with me, then 31 and 33 with my brothers.

  7. Reply

    Ali @ His Birdie's Nest

    March 23, 2011

    My Mom had a similar experience when she was younger. My parent's tried for years to get pregnant and she didn't find out until her c-section when I was born that she had endo and that was why she'd been in so much pain and had trouble conceiving. I would be pissed too! And I think there should be more education about this!

  8. Reply

    honey my heart

    March 23, 2011

    i've heard of endometriosis but am not too familiar with it. i hope more women become educated about it, i will definitely tell my family.

  9. Reply

    Tez

    March 23, 2011

    I was finally diagnosed with endometriosis at the age of 31, after years of telling my doctor that I thought that I might have it. She told me that I was too young to have it and discouraged me from getting tested for it because the only way to truly confirm was too invasive. During an annual pelvis exam, my doctor noticed something was off and sent me for an ultrasound. That was when I found that there were 2 huge cysts growing on my ovaries and multiple fibroids. Surgery was scheduled to clean out my innards and I have been on continuous BC pills since. My symptoms got better…but I do still have some bad months here and there. Hang in there. Hopefully someone will figure out how to cure this disease for good instead of just treating the symptoms.

  10. Reply

    BigAppleNosh

    March 23, 2011

    Thank you for sharing this – I don't know much about endometriosis since as you said, it's not talked about much. I'm doing some research on it now.

  11. Reply

    -J.Darling

    March 23, 2011

    Another thought – Women DOWNPLAY their symptoms without thinking when they go to their MD's. Sure, your period knocks you out for 1 day and you hate it, but I bet you say, "Is there anything they can do? I mean, it's just once a month, and I can get by, but it bothers me…"
    That doesn't sound like an urgent issue, so why would an MD pay a lot of attention to it?

    I am w/ you in BE YOUR OWN ADVOCATE! Trust that NO ONE knows how you're feeling better than YOU, and keep talking until someone listens. Remember, MD's are just PRACTICING medicine. They aren't experts on every aspect of every human body. Don't feel ashamed. You (or your insurance company) are PAYING physicians. Patients have a voice and if that doesn't work, your dollars have a voice. (I'm not adovcating unnecessary testing, but I am advocating that patient's remain an active part of their treatment.) 'Cause you're worth it. πŸ˜‰

  12. Reply

    Sugar

    March 23, 2011

    Thanks for sharing your story, I 'think' I've heard of endo before but not really. I've realized recently that female pains just aren't talked about because 'it's so private' well I call BS. We should be sharing our stories – Women are our own best support groups and hearing other people's stories are the best way to educate ourselves!

  13. Reply

    -J.Darling

    March 23, 2011

    One more tip! Remember with BCPs – There are HUNDREDS of differnt types w/ different mixes of hormones. So, if after 3-4 months, a pill is making you really depressed, go back to your MD and get another (I've been on 6 different ones).

  14. Reply

    Amy Stewart

    March 24, 2011

    I'm so sorry to hear that dear! Yes, I totally agree with you 100% on being your own health advocate. If you don't look out for yourself and make things happen… no one else will. Good luck with everything. Positive thoughts and prayers…

    Rope Bracelet GIVEAWAY

  15. Reply

    Katie

    March 24, 2011

    Thanks for sharing this – honestly, I don't know much about endo, but now I'm on my way over to read about it.

    Before I started taking BC, my periods were AWFUL. I was irregular (maybe once every 3 months, but then it would be pain that was a regular period to the power of 3). Like, I had to skip class in college to stay at home. I happened to be taking the GREs one day when the cramps/nausea/etc started…I BARELY made it through the exam (didn't get the best score ever either…but I blame that on the blinding pain in my lady parts that I was going through), but then I ALMOST had to pull over on the side of the highway on the way home to puke. I was on the phone with my mom the entire time making her talk to me so that I wouldn't throw up! Thankfully, as soon as I went in BC, all of those problems have completely subsided (and I think that is interesting that they say being on BC actually helps endo? That's useful information…I agree).

    Anyway, thanks again for sharing! Hope you are feeling better soon!

  16. Reply

    Mrs G

    March 24, 2011

    Thank you for this! I was diagnosed when I was 20. I'm 27 now. I was having golf ball sized cysts rupture and it took a while to find a doc who would do a lap.

    Three laps, partial bowel resection & lurpon later – finally conceived and had a healthy little girl. BFing so I don't get my period. Who knows what the future holds, but I'm just hoping that this disease starts getting recognition. I wrote about my story on my own blog – and how while it doesn't kill any one … it breaks your heart.

  17. Reply

    Kate

    March 24, 2011

    Thank you for sharing this! I just jumped over to the Mayo Clinic link you posted as well, and am learning so much more about endometriosis! I would be beyond pissed if I were you as well, and am so glad that now you seem to be getting decent treatment.

  18. Reply

    Smile Steady

    March 25, 2011

    My college roommate had endometriosis. I remember seeing her curled up on the couch with a heating pad wrapped around her. I am happy to say that her little boy will be two next month, however! Miracles happen. You're still in my prayers.

  19. Reply

    thisgirlsjourney

    March 28, 2011

    Hey, your story is pretty typical and very similar to mine, my body came to a grinding halt when I was 29 as well.

    The surgery changed my life, as did changing my diet (cutting out dairy, gluten, low sugar and caffiene really does help). I've been really good lately, other than this last couple of days where the pain has been difficult to cope with. There is light at the end of the tunnel though, it will get easier.

  20. Reply

    Cheap Wife

    March 29, 2011

    I'm sorry πŸ™

  21. Reply

    fromscratchblog

    March 30, 2011

    (I know I'm a little late posting this – I apologize!) Thank you for sharing your story with endo. I was "diagnosed" with endo a year ago – I put it in quotes because my doctor still isn't 100% sure I have it (wouldn't know without laproscopy, I guess?). I agree with what you said about girls needing to know about endo when they're young. Lots of hugs to you.

  22. Reply

    MELISSA

    April 2, 2011

    hello, just came across your blog. i was just recently diagnosed, actually i have my surgery yesterday on april fool's. i wish my doctor was tricking me when she said she found numerous lesions and a cyst on my ovary. after 11 yrs of suffering i am relieved but now im crying like a baby every five mins, i dont feel like anyone understands how serious of a disease this is, its not only if they cause death should u worry like this seriously impedes my daily life. but hey i have faith i can make it through i did 11 years of living in the dark now that i know what i am treating i think i can live a happier life

  23. Reply

    Nellie

    April 4, 2011

    I've had the type of period and pain you talked about since my teenage years. At 17 my family doctor freaked me out by telling me he thought I had ovarian cancer. No one told me about endometriosis. Someone told me I might have it 2 years ago. I went to the doctor. She agreed I likely had it, but my insurance didn't cover the procedure to test for it. So she gave me an IUD instead (more birth control essentially). It has really helped with my period pains, but it doesn't take away from my fear of what it will be like to try to conceive. Thanks for sharing your story. I really thought I was alone for most of my post period life.

  24. Reply

    Tubal Reversal

    April 18, 2011

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    I want to share here that those women had tubal ligation and who wish to give birth again, then they should not have to worry about …
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