So angry & upset- need more surgery & instead being fobbed off & cant stop crying

Had an appointment with the bowel surgeon taday as have stage 4 endo on my bowels uterus & in my abdominal cavity (also told today some on my rectum). Was told at my last hospital appointment that I would need major surgery to help.

Today I went to the bowel surgeon- got told he didn't want to operate until it gets to such stage as I absolutely can't take it any more & have to have it (which is now!!!!) He'd asked to see me urgently so I presumed I would be having my op done soon. Instead I was fobbed off with "oh we'll try pain management first then wait until you absolutely have to have the surgery"

I am so upset- I told him that this was ruining my life, I was in constant pain, I had been in hospital ect but all I got was "hmm yes it does sound unpleasant". I even showed him my prescription that I had just picked up- a huge bag of morphine, tramadol, co dydramol, dosulepin & codeine & paracetamol, as well as all my other tablets. He said that pain management would probably give me more medication & painkillers to help with the pain & in the meantime they will keep an eye on the situation.

When I came out I burst into tears & when I told my dad & fiance they were furious- dad thinks I should get a second opinion & my fiance is telling me to go back to the gp tomorrow to tell them I can't take it anymore. It's so rediculous- I can barely do anything- cant go out much, sex is agony, constant pain, toilet problems... yet I just feel like I am being fobbed off. I am so angry & can't stop crying- why would they tell me I need surgery but refuse to do it until it's gotten to the stage where it's too much for me? I feel so let down by the healthcare system & just don't know what to do. Any advice?

15 Replies

  • I agree with your dad and fiancé go to GP, tell them what happened and ask for a second opinion.

  • Thanks for the reply Mabes- yeah I'm gonna do it tomorrow. Been suffering for too long now & think I need a second opinion xx

  • Good luck! Let me know what happens xx

  • Thanks so much :) & I will xx

  • I am so sorry to hear about how much you are sufdering. I am disgusted by the bowel surgeon's lack of compassion. Good luck when you go to the doctors tomorrow. I hope it is resolved for you soon.

  • I am so sorry that you are suffering so much and that the doctor has been so unhelpful. It's ridiculous the way he has treated you. I agree with your dad and fiance, definitely ask for a second opinion and good luck with the GP tomorrow. One thing that I've seen on here (not personally done it but considered it in the past) is to take your dad/fiance in with you when you see the doctor. I know I sometimes forget things I want to say, or feel like I can't properly put my side across because I'm being fobbed off and before I know it I'm back outside the surgery feeling like I've accomplished nothing. Take one of them in with you to help you fight your corner, if you think it would help. Good luck!

  • Thankyou purplemonkey :)

  • Thankyou ca176, yeah I think I will take my fiance in with me. I literally just felt so let down & beaten yesterday & I think to be honest my GP won't be too happy when I tell him what was said to me! Xx

  • I hope you get some success with the GP. I have also had similar problems when I got admitted for pain relief cause things were so bad then they told me there was nothing home and sent me home on paracetamol. Had my first lap this week and have found endo plus lots of other adhesions/inflammation etc, I am also being referred to a bowel specialist! Best of luck at your appointment :-) x

  • Thanks rw01- its just so frustrating to have more stress on top of it all. And sorry to hear about what happened to you, hope u get it sorted & are doing ok after the lap xx

  • I felt this way. So many so called gynaes have little knowledge of this condition. I emailed a doctor called mr Trehan who works at spire elland. He is an amazing man. I sent all my clinical information to him over email and asked if he could help. He emailed me back completely contradicting everything I had ever been told. I decided to spend £300 to see him face to face and he spent a whole hour explaining everything to me and why my other doctors were wrong. He then wrote to my GP and insisted that I should be referred to an endometriosis centre of excellence (I couldn't afford to have treatment privately with him). It is very important that advanced stages of endo are treated in BSGE accredited centres (you can find a list on their website). These centres can fix the most sever cases of endo. Me Trehan is one of them in leeds. He has spend 10 hours in theatre fixing the most severe cases I have ever seen whilst saving women's ovaries and other precious organs.

  • This is the nhs England policy which clearly states that you should be referred to a BGSE centre of excellence. Rub this is your GPs face!

  • Thanks so much Jdgirl030, I cant afford a private consultation but I will definitely go back to my gp with all this. I think that my GP will be in my favour anyway as she knows the extent of the problems this has caused me. Thanks xxx

  • No problem! If you have private health insurance I managed to battle with mine and eventually they agreed to pay for me to be treated by Mr Trehan. Many of these centres are under the NHS though so you shouldn't have an issue.

  • Thanks anyway- the advice really helped me xxx

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