Nightmare and want to give up with doctors!!

Hello,

So yesterday i returned to my doctors after months and months of being in continuous pain- not just in my pelvis and legs like normal (normal for endo pain that is), but ive been having pain all over my body. Stiffness in legs resulting to some days having to literally pick my legs up out of bed to get going. I cant get enough sleep i constantly wake up feeling like ive had none yet i go to bed at 9 and wake up at 6 - this used to be plenty!

So my doctor said Its my weight, i dont have endometriosis anymore and the weight is the problem (im a size 18 and have been trying to loose weight anyway), Since June i have only lost 10lb despite doing regular excercise even though im in pain, which im being tested for thyroid function etc, but his idea was to just put me on a pill that helps loose weight. anyway...

He has diagnosed me with Fibromyalgia but said there is nothing he can do and i just have to put up with it, as well as endo, there is nothing more he can do as in his eyes i shouldnt have it no more after having a laproscopy in 2010 and no period since the endo cells can not grow therefore im not in any pain.

by this point i broke down to which he replied your depressed- fill out this questionnaire and i'll pop you on anti depresents (funny that one of the questions i have to answer is "Do you ever feel alone?" my answer would have been yes when my doctor does not help or listen or try to help me. I'm generally a positive person and try not to let this disease and lack of support get to me but like many of you im sure, i do have bad times where i get down and i do get depressed but im not needing anti depressents. not once did the doctor even examine me nor look at me!!!

So to make this blog a little shorter (sorry about the rant), I left my doctors with a prescription for laxatives, a diet pill, anti depressants, blood test (only useful thing) and the advice that there is nothing and no doctor that can help me with endo or FM, i have to put up with it and live on tramadol for life. Great!

I then had a hospital appointment with the gynaecologist who said pretty much the same thing in terms of endo. That i dont have it - i get that they ablated the endo away and without periods in theory i shouldnt be in pain but i just dont get it! how can i be in this much pain in the pelvic area and nothing be wrong. Ive had ultrasounds and internal ultrasounds but all was fine. They dont want to do another lap in case it causes more pain and go in for no reason which again is understandable really.

I'm at my wits end and dont know what to do - last night i sat there and said i wouldnt go to another doctor again as they dont help! i just dont know what to do!

im changing my diet to no wheat etc as i have seen a nutritionist and do believe this may help!

can anyone help or advise.

Sorry again for such a long post!!

Danni

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  • im sorry to say this sounds so familiar i am a size 20 ur brave to work through the pain my doctor keeps telling me i must excercise i dont think they realise if i did an hours worth of excercise i would be laid up in pain for days and just cant do that being a mum my doctor said for years it was my weight before my diagnosis im waiting to see the gynae again as i had op in june 2011 and bang september was really bad on the 8th dec the endo had pushed my ovary into my left side on the womb wall and at the same time all my cysts burst so was in agony they will blame everything on weight if they could i always feel like doctors dont care about me atall they have no understanding of endometriosis my friend struggled for years with endo couldnt have anymore kids by the time she was 40 had a hysterectomy and it came back after so she had enough went private and the private consultant said if she had come to him years ago he could have sorted it out so i feel like that is the only way sometimes but i cant afford to go private so nhs it is all i can say is see a different doctor for a second opinion good luck hun xx

  • O.M.Gosh..........PLEASE get a 2nd opinion hun........Like you I had so much pain..that..I couldnt move ....2 the point of being hospitalized 3 times....and still no 1 listened.....untill (this is not aimed in scaring u hunny) 2 cut A VERY LONG STORY SHORT....... I had 2 have emergancy surgery to remove my colon...as the endo was so wide spread that it attached itself to my bowel and caused a blockage------which resulted in me now having a colostomy.....SO PLEASE PLEASE make some 1 listen, GOOD LUCK Danni----be thinking of u xx

  • Thank you both!

    Learidd- i feel for you i really do! i hope things get better for you! i cant afford private either otherwise i would too. i hear everyone say all the time to go private but its just so expensive!

    Ozzdudz- thats awful im so sorry to hear that! makes you wander if doctors do know anything about this disease!!! dont worry i wont think in to it too much but i will get a second opinion :) just who to go to!

    I hope this isnt too personal or whatever but when you have found the endo worse had you stopped your periods before hand? i just get so confused on how it can manofest or get worse or even grow if we dont have periods! very worrying!! I have a lot of trouble with the bowels too!

    Thinking of you both ladies xx

  • hi Danni - i completely understand what your going through i have been battling for years with GPs and gynae's and only finally getting somewhere. i dont understand how they are saying you dont have endo ye you have had it albated or diathermied but you still have endometriosis there is no cure as they keep saying and that there is just treat - i was told the same after my operation and basically they said we have inserted the coil so thats it you wont have any problems but too be honest it has been very severe since i was in hospital - i was seen by the pain team who were the only helpful people as i couldnt stand the pain - after discharge they had recommeneded that i was seen by the chronic pain team- i was a little apprehensive about this. But i have honestly got to say i had my first appointment yesterday and after coming out i feel like i am finally being listened to the consultant was amazing he listened - he said that there is millions of women in the UK suffereing with these problems and there is little research in to pelvic pain in women - he said although endo may have been treated the pain hasnt nessacelrily been treated. He said that they are goin to post some videos and info on the web soon - il post it when i can find it.

    but since yesterday my mind feels a little bit more at rest -yes he wants me to start taking anti-depressents which i was a little anxious about - but he explained why and it did support what he was saying he gave me some injections as well yesterday and the pain is so much better already!

    it may not work for you but it may be worth looking into and seeing if there is a team in your area.

    is your GP unsupportive aswell? is it worth moving ?

    K xx

  • I can understand how u feel as Iv got to the stage were I don't go to the doctor I just put up with the pain even when some days it's really bad Iv been in hospital twice this year due to passing out with the pain and gave me a scan I have a 3cm cyst on my right ovary got dignosed with endo after they finally gave me a lap in January this year to find that I had aheadions in my pouch of Douglas and endo in my womb the consultant has said they removed all my endo and cut the aheasions away but said that shouldn't be having this much pelvic pain and has refered me to pain management and doctors just fobb me off with painkillers wish I could have a doctor that will listen to me

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