How can they say they found nothing in my second lap??

I've had two laps, in the first one they said I had mild endo and lasered it off (dec 2009). There was definitely nothing mild about the pain!! Two years later I had my second lap (sept 2011) where they said they found nothing but a few adhesions and a sticky ovary (whatever that is) so they didn't think my pain was gynea!! I know this is complete trash because the pain I have gets worse with my period and ovulation....doesn't take a rocket scientist! They were adamant it was IBS, then it was in my head, currently I'm being seen by a physio for my hypermobility syndrome, she seems to think that doing my pelvic floor will help but the pain is in my tummy not my.....lady bits! I have seen a gynea consultant in the last 6 months and at the time I had been put on norethisterone (very high dose progesterone) to stop my bleeding. I took this for 9 months and it worked, my pain levels were manageable and I felt like I had my life back.....the gynea agreed that because this worked that my problem was gynea and he was happy for me to stay on it.

HOWEVER!!!! I should never have been put on it i the first place as I've now found out that if you're hypermobile you really shouldn't take progesterone even in small doses as it makes me even more bendy. I've had to dislocate both hips and one knee cap before anyone realised it was the progesterone :( I've now been told to take paracetamol constantly.....erm *cough* what??? paracetamol??? that stuff normal people take for a mild headache??? what, on it's own??? I may as well not be bothering with them at all, they are not even touching the pain that has returned!! I've had no mention of going back to the gynea, just "well we can't do hormonal treatment so just take pain killers" from my gp. I wanna scream at the world......"somebody help me, I cannot send my life in my bath!!!" Rant over, sorry. Can anyone give me some advice please? or even just a hug, I'm writing this in tears,sat in the bath after being woken up at 6 with more pain.....I can see no light at the end of the tunnel any more....in fact there is no tunnel I'm digging through a brick wall with a tesco value teaspoon :(

12 Replies

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  • Bless your heart xxx Sending big hugs xxx

    I don't have any advice I'm afraid, am just sickened by the fact that you can be left like this, it is a total and utter disgrace and I really feel for you. One thing I do know is Adhesions DO cause pain, my mum had a Hysterectomy 20 years ago (leaving one ovary) and is now full of adhesions threatening to twist her bowel, causing problems with her bladder and is in daily pain. Despite that, she is taking care of me, she is my angel, my rock.

    If I were you I would ask for a second opinion, and, if possible, be referred to a Endo Specialist if there is one in your area. Please, please don't sit in the bath feeling this way, use what little energy you have to stand up for yourself and fight the system, it's the only way I got anywhere and I don't regret a thing.

    Take good care of yourself. Much Love. xxx

  • hey you soundlike your at the begining of endo....for wat its worth i saw two gynae docs who said i had ibs...then i wentto a new gp who was actually a gynae doc....whooo!!...so he sent me for a scan i had a huge dermoi cyct on my ovary becos i was egnored by the time got to operating it had destroyed my hole ovary and fellopian.....and he couldnt remove all my edhesions...my point is if you know in your heart your pain...then you have to find someone who will listen...i tryed 3 gynae docs to find the decent one.....the 3rd one was horrible....wat ever they find your not on your own...theres a site full of us....lol...and parcetamol?????are you kidding!!!wow u need a new doc....i take 3 naristerone a day,8tramadol.4gabapentin.3dimorfic sodium and im still pain....seriously you need a new doc..... sending you *hugs*...if you wanna chat anymore...come and find me...lol..xxxxxx

  • Gosh Misee u take a lot of painkillers -.hope there's a plan to do.something? And I agree with the first comment - u must get a Endo specialist. And u must make a nuisance of urself - I am bring bounced back and forth to gynae and bowel - neither wanting to help me. So i am shouting louder and chasing it up twice a week and so far it is working - gp has bought appt forward by two months. There must be an Endo saying, such as 'got Endo?-get gobby'. Hope this bought a smile to ur face xx

  • I like that!! "Get Gobby", and so true !!

    We HAVE to stand up for ourselves and make sure we are heard! Phone calls and pestering do get you somewhere, they did me. I had my first appointment in December, she said "take these and come back in April, you haven't got Endo, you can't have" !! I wrote a letter (another story) and hey, when I go back in April I will already have had a Lap and been diagnosed with Endo on both ovaries. How I would love to shove that up her nose!! Otherwise, if I hadn't stood up for myself, I may have been put on list for Lap when I go back in April, then waited god knows how long, and probably wouldn't have even been looked at by the time October was round when I first went to Doc.

    So please Missteal, hang in there and "Get gobby" xxx

    (I'm also on a cocktail of meds: 30/500 Cocodomol, Buscopan, Tramadol, Diclofenac, Gabapentin, and Oramorph and am almost bed ridden :( but still fighting!! xxx

  • yep im on alot of pain killers and they put pregablin upto 1000mg.....i also like that saying got endo-get gobby,,,,lol i really like that...xxxxxxxx

  • Hi missee, how are you on the Pregablin? I am currently on Gabapentin and even on the low dose they start you on I am having the most awful side effects, double vision, tremblng, horrible jerks etc., so am being changed after Easter onto Pregablin, supposedly with less likely side effects. How are you on it? xxx

  • I can't offer you any advice I'm afraid because my situation is similar. I too have had 2 laps & was told that my endo was mild. But like you the pain is anything but! I had my second lap last January when they lasered it off and put me on prostap injections for six months. This did help the pain while I was on them but as soon as they finished it came back as bad as ever. My husband has often come home from work to find me collapsed in a heap on the floor unable to bear the pain. I had been discharged by the consultant after my last injection but managed to get another appointment with him because after nearly four months my periods had not returned and the pain was still excruciating. He told me that I shouldn't still be in pain & he wasn't going to go back in as it was under a year since my last procedure. All he did was say "take painkillers" and sent me for ANOTHER ultrasound which found nothing. So although I have no advice as such I can imagine how hopeless & helpless you must be feeling. All I can say is you are not alone, keep your chin up, keep fighting and here is a hug for you.xxx

  • hug for you too Tink, it is hard, but keep fighting your corner, pain is pain is pain, and you should not be left suffering. If only they did more "googling" or joined this site, they would know that the stage or amount of Endo has no bearing on how much pain it is causing. Someone with extensive Endo may be in very little pain, whereas someone with minimal Endo can be in constant agony. It angers me that these so called professionals don't know these things, and that I have educated myself on these things in a matter of months. Grrrrrrrr. Take good care xxx

  • hi missteal REALLY BIG HUGGLES! im so sorry your feeling that way, i am currantly waiting for my second lap and my gyne thinks its ibs to and i only have a small amount of endo but big pain and i have hyper mobility syndrome to and i didnt know proestrogen made it worse im intolerant to eastrogen it makes me crazy and just come off the pop pill as my body felt very rubbery and had dislocations to deal with! im sorry i dont have any advice but all the ladies on hear have told me to fight, fight fight and thats what im guna do i was told its in my head! your making it up im an attention seeker its so soul destroying but yet im on strong pain killers 4-8 tramadol 4 oxy codone and 2 celebrex for my joints a day im currently compossing letters and speaking to people in the NHS and private i will let you know anything usefull that comes from it or the people i speak to as they say got endo? get gobby! i so need to make badges for that!

    good luck push hard

    lots of tummy love and hugs for you

    xxx

  • Thank you ladies for all your support, I really don't know how I'd cope without this website. I certainly don't feel as though I'm at the beginning of endo, been suffering with it since I was 9 which is now 20 years ago :( It was only after having my Son that it got much worse.

    @natureschild.....If you have hypermobility symdrome too then I highly recommend Isobel knight's book "a guide to living with hypermobility syndrome - bending without breaking". She has hypermobility syndrome and also has endo. I have learnt sooooo much just by reading that book. That's where I found out about the progesterone!! I had to take the book to my GP and show him the chapter on "hypermobility and it's affect on women and their menstrual cycle" before he would listen to me!!

    Hugs to you all xx

  • Hi, sending big, big hugs and hope you are feeling a bit better today. I would also love to know how one lap can show endo and another doesn't.

    I have had 3 laps:-

    1.first to remove dermoid cyst but told no endo just adhesions same as you so pain not gynae and discharged!

    2.to take another look as still in pain, again told definitely don't have endo only adhesions, lots of scratching of heads because they didn't know what was causing the pain.

    3.to remove another dermoid and surprise, surprise found endo.I only had the third lap because I paid for private MRI because I knew something was still wrong.

    How is this possible? Did they miss it the first couple of times? I've heard it can be so small that it can't be seen always, that the appearance can be different to the "black dots" that most gynaes look for.

    Who knows? But I can definitely say that it can be missed, it was for me.

    Hope this keeps you fighting on x

  • Massive massive hugs! As far as I was aware, there's no absolute link between the pain and the severity of endo, I have stage 4 but am no where near in as much pain or on as many meds as some of you! It depends where it is, and where the adhesions are. I've recently been impressed by the book, endometriosis a guide to healing though nutrition (it's very heavy going and I've still not finished, but offers a lot of hope and a lot of insight into what the heck is going on in our bodies). I've also just started on the endo diet - no wheat, cows diary, citrus, and more fish, more veg, more supplements as a way of trying to do something for myself. (after my last lap, my consultant has given me 6 months to conceive either naturally or with ivf, then recommends pelvic clearance for the pain at 37!!!)

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