Posted by: endobitch | April 24, 2009

You’ve Got a Story…

Anyone coming to this blog must have a damn good story about endometriosis. (Endo Bitch: We know we do.) But rather than share our own stories, we would like to hear yours. Seriously. Use the comment section of this post to blow off some steam, let your hair down, and let ‘er rip. We are so there with ya sistas. 

 

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Responses

  1. I fully support this blog! I went to 4 ob/gyn’s who told me it wasn’t endo- based on an pelvic examination without a rectum exam. Finally I found an endo specialist on my own- I went with the idea that I would have to beg for a laproscopy to properly rule it in or out— but there was no need. As a SPECIALIST- it was obvious to him and he knew that a LAPROSCOPY was needed to really diagnose and TREAT it.

    • hey –
      No kidding – it’s so common it’s unbelievable. I think every woman that comes to our support group has said the same thing – no rectal, lots of endo missed. I’m sorry you had to go through that!! Thanks for posting.

      Endobitch

  2. Well, I have had about the typical endo-fairytale so far; I’ve been to about 6 drs/nurse practioners over 6 years complaining about all that good stuff we deal with, pelvic pain, extreme pain with periods, so on and so forth… and would always get told in that reassuring tone, “Well, some women just have cramps and just don’t have high pain tolerances” (ha! that’s funny).
    About 2 surgeries and about 10 different treatments later, here I am, all my symptoms still the same but with a diagnosis of endo… I’m so glad to have stumbled across some support groups they have online, and I’ve read just about every book I could find on this disease. I’m all for raising awareness and educating others! Thanks for the blog, I loved it!!

    • Hey Anonymous,

      So very sorry you’ve been through so much girlfriend. It sounds just horrible. We definitely understand what you’ve been going through. In fact, most of the women we currently know with endo are the “endo elite” – those who have suffered for years without getting the correct treatment for this disease. I think the responses you have received are from those that are not endo specialists (of which I am coming to believe are very few in number) and their replies reflect their lack of knowledge in how to diagnose and treat this disease. Please come back and visit and I hope you can receive some comfort from reading this blog.

      Our best to you!!

  3. So happy to have been told about your site by a fellow endo gal…

    I’m 27 and was finally diagnosed in February of this year (although it wasn’t exactly “shocking news”). My mother also had it and so I always kind of suspected I’d get it too. Like everyone my first attempt to adress it when I was 18 didn’t really go over well…the bitch gyno just said “go on the pill and that will stop it!” so being just a kid and fearing pregnancy (if only I’d known how unlikely it would be for me to get pregnant!!!) I took it for 5 years.

    When I stopped it the endo didn’t take too long to show it’s ugly face and two years later after convincing the new gyno that I must have endo and that I’m going to lose my job if something isn’t done he did the surgery.

    I too have read every book, blog and support group and have heard every insensitive remark. My favourite is “oh my friend had that and she had the surgery and she’s all better and got pregnant right away!!!” or “oh I know someone who had that and got pregnant and was cured…you should get pregnant!!!” like I haven’t been trying THAT!!!!

    anyway for more on my story you can read my blog too 🙂

  4. Oh, I love doctors. I’m in the US and I’m a PCOS sufferer. I had the ultrasound done TWICE that showed “endo positive”.

    They throw birth control pills at you (that gives me migraines from hell).

    One tried to tell me that it was in my head. I wasn’t exactly on her priority list because I wasn’t preggers. Sorry! I decided to wait for kids until I’m rich or something like that and I avoided STD’s to prevent this kind of pain and suffering. I did my part, it would be kind of nice if the doctors stepped it up and did their part?

    One STUPID gyno acted like I could psych myself out of the pain. I DO have a high pain threshhold. I’m an athlete and a fairly strong woman, healthy, not obese, etc.
    And yes, the Endos and the PCOS knocked me on my arse. It takes a LOT to knock me on my arse.

    When i was first diagnosed with a ruptured cyst, I was in the hospital being tested for appendicitis. The ER professionals KNEW what kind of pain I was in. I’ve seen hard up, tough b*tches who also had this thing, they said it was so painful it made them faint. Mind you, these are the tough b*tches, not some serene, whimical gal who faints at the sight of blood.

    So I’m researching like mad, bugging my insurance carrier to lobby the doctors to do more preventative medicine, trying to take care of myself, taking that Imodium, taking my meds.

    Ironically, I’ve lost a few pounds. I have to eat lighter in order to not aggravate the cramps. and this lovely economy makes insurance that much harder to afford,
    some doctors rip you off entirely. (one doctor charged me $600 for an ultrasound while another charged $200)

    Now i’m hearing that the thymus gland is involved. The same thymus gland involved with the T-Cells? I heard t-cells kind of block the extra estrogens. Now I got to make sure I avoid any kind of xeno-estrogen. Man!

    I also noticed the same players are involved with the Endos, PCOS, breast and ovarian cancer.

    There has to be a cure. If they can cure HPV and impotence in men, they can cure this. I’m holding the medical community up to it.

  5. I am 27 and was diagnosed with endo during my tubal ligation last year. I had been suffering with horrible pain on my left side for 5 years and random softball size cysts that I was told were “fine”.

    My husband and I were lucky enough to have two kids (well 1 kid, I had the other at 16 but as he says, they are both his) and we were done. I was in pain a lot and sick of the depo that I had been on for 8 yrs on and off. After my surgery I had some bad pain and when I went in for my re check the nurse asked me why I didn’t opt for a hysterectomy… Excuse me? Why would I have a hysterectomy? I thought she was an idiot and didn’t comment. The doctor came in checked my incisions and right before she left said “Oh, by the way we found some endo under your left ovary” and then she tried to leave… No, not happening, I asked how bad? Is it any where else? Did you remove it? Her answers were they didn’t look to see if it was else where, looked like stage II or III , and no why would they remove it.

    Since then I have been to many other doctors and on many other meds. They tell me I am rare because I haven’t had a real period for atleast 5 years and it had been 5 years before that. The depo I was on should have controlled it but didn’t. I can’t take BC because I bleed non stop and they have tried all sorts of anti inflammatory’s and as of now I am on 900mg of gabapentin with no relief in site.

    Most people say to me “Atleast your not infertile, you are so lucky” and yes, I thank God for that but it kills me that most “support” sites for endo don’t take me seriously because I have kids already. It doesn’t mean that I don’t hurt and that it isn’t affecting my life. Hell, my kids hate how I am now. I am too tired to play, I am always laying down with my heating pad, I can’t always drive them where they want to go because of the meds, ect. I worry about what will happen when I no longer have my husband here at night to help me (I need a nap to be able to cook dinner) since he will be deploying. Do not think that I am saying I do not feel bad for those who are unable to conceive, I do feel for them but I am so sick of being the “bad” guy because I have kids. All I wanted was to have someone to relate to, someone who understands the pain.

    So yea, sorry about the mini rant. I haven’t read that far into this yet but so far I really enjoy your writing and am happy I found this


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