Needing to know answers

Hi everyone, I'm Dani and I'm 24, I'm also new to this. Was just wondering if any of you would be able to help me.

Since 2009 I have been suffering with pain every month, it makes me sick, feel faint and have been hospitalised numerous times. In 2009 I had my first laproscopy which didn't find any endo, then in 2010 I had my 2nd which again didn't show anything. I have most of the symptoms of endo. I have now been referred to another gynaecologist and have an appointment a week on Monday. I'm just getting so fed up and am actually under the impression I must be going mad. Doctors are now telling me that the pain must be in my head which makes me feel even worse considering I'm due to start a degree next month in mental health nursing.

I was just wondering if anyone else has had similar experiences and how I can get doctors to take my pain seriously. I can't carry on like this.

Thanks

16 Replies

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  • They made me feel like that!! Keep nagging till you get some answers!!

  • Makes sure you have been referred to a BSGE centre, if a general gynae did both of your laps then they could have missed it both times. Seeing a BSGE specialist ensures that you see someone who would know what they are looking for during a lap. Check the BSGE website to see if Monday's app is with one of them.

    Hope this helps x

  • Thanks that does help. I have just checked and my app isn't with BSGE specialist so do you think when I see the gynae Monday that I ask to be referred to one of the specialists? Xx

  • You can ask them but it's usually your GP that will refer you but you will have to tell them about the specialists as they don't usually know about them. See the gynae on Mon and see what they say about your symptoms. Is there a BSGE centre near you? X

  • No not local I think my nearest is about an hour away which isn't too bad. I'd be willing to go anywhere just to try and sort it out. I'm in agony every month and it affects my legs too so I find it difficult to walk on times. Today has been a really bad day and am just getting to the end of my tether xx

  • How did you get on at your appointment? X

  • Thanks for asking but It's not until next Monday but am in absolute agony and sorry if tmi bleeding really heavy. Had to ring gp today and ask for some stronger painkillers but she told me to wait to see consultant so am having to get through this week without any help. Luckily I have another gp appointment with regular doctor this coming Wednesday so hopefully she will prescribe something for the pain. Fingers crossed something gets sorted soon. How are you feeling xx

  • Let's hope the GP on weds can help! I'm always being told there's nothing else I can have too. I'm ok thanks just trying to chase my post-op referral for IVF which hasn't been done. Feeling ok apart from the lower back pain which has been present for a couple of weeks. Fingers crossed for you xx

  • I'm with you, my dr's refusing to do my lap and thinks I'm over exaggerating b/c the treatments and painkillers should help but their becoming less effective.

    Cupcake1617 told me to keep a pain diary/journal where you get a planner or find a planner to print off for each month online and put down what your feeling each day.

    Here's a legend:

    / manageable pain

    X unmanageable pain

    Your medication (1st initial then # of mg's in dose)

    % days of school/work missed

    P period

    H headache

    Then if you get a weekly planner draw pictures of where it hurts so that the dr can see.

  • That's a great idea thank you will definitely start keeping one. Just feeling so exhausted because I can't sleep. Fingers crossed this doctor that I'm seeing Monday will decide to do something. As I said I am due to start uni next month but the pain I experience is so debilitating I find it difficult to get out of bed sometimes xx

  • It's ok, I'm going into grade 12 in the next 2 weeks and I currently can't walk for more then 30 minutes without being in so much pain I throw up and then getting a flare up that lasts 2-3 days.

    I know how you feel about getting up, all I want to do is sleep with my heating pads and do nothing, I'm scared of going to school b/c I think I might miss an entire semester at this point.

    I wish dr's were more understanding!! We need to be able to live our lives and all they want to do is load us up on pills and tell us it's in our head.

  • I'm having issues sleeping too, I keep waking up from pain or just tossing and turning.

    I hope your able to get some sleep.

  • You too hun. Have you got any follow up appointments soon? Fingers crossed they can get you sorted. I'm kind of hoping that they do find out there's something wrong with next appointment because then they can stop accusing me of making it up. It's not as if us girls go around making this sort of thing up. We want to live our lives to the full not spending most of our time stuck at home because of pain. Keep me posted with how you're getting on xx

  • I got a follow up on the 22nd I think that's Monday, I'm hoping that my gyn will believe me.

    I have an appointment with a specialist on Halloween too but at this point I'm not sure if I can wait without seeing a dr and getting more painkillers or trying new ones.

    Have you tried Naproxen? I find it works the best for me, I'd ask the dr for 375 and 550. 550 is the best though but I use 375 when I don't have a flare up, just to keep inflammation at bay.

    I know that feeling b/c whenever I go to hospitals or medicentres their like "Oh your back" and all I can do is go "It hurts" and then I'm told it's nothing b/c my test and scans are all fine. My hemoglobin is also high enough for a male who eats red meat.

    I heard that endo can grow really small sometimes so some gyns don't know what it is, have you been checked for anydomytosis (I probably mispelt that).

    I really hope they find something xx

  • I have had two laps in the past but nothing ever shows up. I had an internal ultrasound not so long ago and I fainted from the pain, it was really bad but still they didn't find anything on the scan so the doctors made me feel like I was overexaggerating but it did really hurt and before I knew it I was coming round and feeling very nauseous. The ultrasound specialist said that I needed to be seen by a gynae again but my gp didn't seem that bothered. I have my appointment on the 22nd Aug too which is Monday. Never been checked for adenomyosis but when I have had scans in the past they've come back clear too. Xx

  • Adenomyosis only shows on MRI I think, it wouldn't show on lap. Or it shows if you have a uterine biopsy.

    Have you had swabs or a pap done?

    I had pain during a pelvic exam & it felt like everything was on fire and they found out it was an infection (BV) that turned into PID, you can get BV from birth control.

    I really think there might be endo though, even if it doesn't show, they might not be looking hard enough.

    Keep fighting! Xx

    I think endo is the disease of hiding:(

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