thread: Anyone have endometriosis? Help please!

  1. #1
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Anyone have endometriosis? Help please!

    Hi ladies,
    I need some help/reassurance. I have ALWAYS had horrible periods, cramping, vomiting, before I was sexually active they were irregular, some days I can't move off the couch because of the pain.
    I am 3rd cycle off the pill (I was put on it to regulate my cycles and have only even been off it while trying to conceive my son, while pregnant with him, while breast feeding and for a period of 2 years while I was not sexually active after having him.
    My fiancé and I have decided to try to conceive so I stopped taking it in June/July. Since then the symptoms have become horrendous again. I feel like I am in labour (I imagine, I never have been due to csection, but I get waves of contractions), tmi but when I need to open my bowels during my period I feel like I am giving birth in my uterus, I get headaches, the past 6 months I have avoided sex because it is painful. And this cycle my period has been super super light as in I have had one pad on all day and not needed to change it (but have anyway for hygiene), but the cramps are the worst ever!
    My mum had a hysterectomy at 35 due to the worst case of endo the dr has ever seen and tumours on her ovaries.
    I have put down my symptoms to my didephlys uterus but when I was getting the "contractions" last night and had pain for 8 days leading up to AF I googled symptoms and I have nearly all of them for endo!
    My questions are if you have it, how long did it take to be diagnosed after going to the Dr and were you diagnosed before trying to conceive, if so did/are you having trouble conceiving?
    What were your symptoms and treatments?
    If I do have it (even if I don't, I have always said) once I finish having children I want a hysterectomy due to risks of endo, cervical and ovarian cancer in my family. But I don't know if we only want one more or if we will want 2 more kids (we already have one each).
    Any advice is welcomed, I'm 26 (I inow, still "young") but all females on my maternal side have HAD to have complete hysterectomies before 40 because of cancers, I want to eliminate that risk.
    Sorry about the novel I just wanted to give you as much info as I could
    Thanks in advance!

  2. #2
    2014 BellyBelly RAK Recipient.

    Oct 2007
    Outer South East Melbourne :)
    4,346

    your symptoms sound very much like endo. i was diagnosed at 23 (i'm 36 now) and have had 4 laparoscopys at various stages to remove it. i had my first DD just before i turned 32 no assistance needed and second DD just before i turned 34, also no assistance needed.

    my suggestion would be to see your gp and get a referral to a gyno. endo can only be diagnosed by having a laparoscopy

    hth

  3. #3
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Thank you so much!
    I had no problem as such falling pregnant with my son, I had a miscarriage at 7 weeks 3 months before I fell pregnant with him, then first month of trying again fell pg with him, but he's 4 now and my symptoms weren't as bad then.
    I figured I have to have the lap to officially diagnose it, I just wanted to check if it was "in my head" if that makes sense. I sometimes hate being aware of things. I guess I'll make an appointment with the gp to get my referral then. I haven seen an ob/gyn since I was pregnant.
    Did you find the lap's helped with your symptoms? Even just for a short time? I have no issues going back on the pill after we have a bub and I find it's nowhere near as bad while I'm on the pill (I was reading last night they quite often put you on the pill to improve symptoms). But in the meantime the pain is nearly unbearable :-(
    Thank you so much!

  4. #4
    2014 BellyBelly RAK Recipient.

    Oct 2007
    Outer South East Melbourne :)
    4,346

    my symptoms after each lap were almost non existant! i never went back on the pill though due to other issues but yes it is one of the main medications used to help alleviate symptoms

    i don't think it's in your head at all. given that your mum had it would definitely put you at higher risk of developing it as it is hereditary. i remember spending the first two days of AF in absolute agony. at one stage (prior to diagnosis) i ended up in hospital on morphine

    so yeah, follow your instincts and get it checked out sooner rather than later as endo can cause long term damage if it's not treated :/

  5. #5
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Thank you again! Will definitely get it looked at and checked out, hopefully it doesn't take too long :-/ I hope I can see my mums gyno as he knows her history and has an idea on my abnormalities previously so is more likely to be willing to investigate.

  6. #6
    Registered User

    Nov 2008
    Perth, WA
    2,315

    I had severe endo before ttc my son...a lap, then a follow up a month later, then 6 years (approx) of the pill with no sugar tablets. I was worried when I stopped the pill to ttc, but my symptoms were totally bearable - nothing like before the lap. The bowel pain was the worst for me too. Since having DS and finished BFing, I have had hardly any endo symptoms. They say preg can halt the progress of endo, so maybe that helped with me.

    Before my lap, they did bloods, which can indicate endo but are not definitive. However, my original gyno (not the one that did the lap, as my endo was too severe and he felt he wasn't able to do the surgery) said he could feel the endo at my internal exam. I suppose that depends on where it is - mine was in the vagina and 2mm from the bowel wall. If I'd left it much longer, I'd have needed a bowel resection.

    I was told it wouldn't affect my ability to conceive (again, it depends on where the endo is), but I have my suspicions... At my CS, the ob commented that one of my Fallopian tubes was badly scarred and probably scarred shut. This makes sense as I believed I was only ovulating from one side. DH has fertility issues, so ttc was difficult for us anyway.

    I first had endo symptoms in my teens, but didn't get the lap until 6 or 7 years later...drs diagnosed everything from stomach ulcers to stress. It was mum who said it was endo, as she'd had it too. Once I told the GP that I thought that was it, she was happy to give me the pill, skipping every second period and strong pain killers to manage it, but it still took almost 12 months until I insisted on a gyno referral before I had the surgery. Once I saw the gyno, things moved very quickly though - less than two months.

    How's that for a novel?!

  7. #7
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Thank you so much! That gives me a pretty good insight and indication of how long it will probably take (depending of course). It won't be hard for me to get a referral from my gp to a gyno, my gp knows I only ask for what I really need and he knows about my didephlys uterus so he wouldn't even question why I want one, I have an entire life's worth of health problems meaning I only go to the Drs when I have to lol.
    I was talking with mum and she's positive I have it too as I'm having exactly the same symptoms as she had as well. I've also read that if we have trouble conceiving and I have a lap done it's better to try within 6 months of it because there's not the build up, so that gives me hope too in that sense. Guess we'll keep trying in the mean time and make my appointment with the gyno and see what happens. I'll be sure to let you ladies know how I go, even though I'm sure I know what the verdict/diagnosis will be... Knowing my body if it can go wrong it will!
    At least this way I can find treatment for the pain etc and not just suffer with it thinking it was "normal" (how are we to know any different if we never have known different?!).

  8. #8
    2014 BellyBelly RAK Recipient.

    Oct 2007
    Outer South East Melbourne :)
    4,346

    good luck hun! hope you get it sorted quickly

  9. #9
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Thanks, so do I! 12 days of feeling like I'm in labour is about as much as I can take lol especially when it's not giving me the end result of a baby!

  10. #10
    2014 BellyBelly RAK Recipient.

    Oct 2007
    Outer South East Melbourne :)
    4,346

    just checking in to see if you've been to see your gyno yet?

  11. #11
    Registered User

    Aug 2013
    Canberra, ACT
    132

    Not yet :-/ I'm waiting to see if we have been successful at TTC then we're taking 2-3 months off anyway if we haven't so I'll see the gyno then. We're getting married in less than a month so I have been so preoccupied!