Feel fobbed off and desperate. Sat here crying and just dont know what to do. Anyone else have below happen to them? What did u do? :(

Saw my gynae consultant this time around. Told her the depot injection hadnt helped and had also given me bone type pain (Im a high risk of oesteoperosis anyway so was due a dexta scan if she wanted to continue). Said that last time the dr said about trying a pseudo menopause drug, having scans and poss a 2nd lap to determine of its endo or adhesion pain. She said bcoz i tried the bcp, mirena and depot there was nothing more she could offer me and was discharging me. Said she would refer me to a pelvic pain clinic. Said they may v well want to do a lap to see whats going on in there. Im sat there earlier and thought "but u havent tried everything and also if they will want a lap done why cant u do mine again as surely that will be easier" Im desp. On my 4th wk of bleeding. Severe pain left lower pelvis and also endo type period type pain central. Pain down left groin to thigh. Lethargic, wiped out and depressed. Cant sleep due to pain waking me up a lot. Limited quality of life. Am mainly in bed or my makeshift bed on sofa. I feel so fobbed off. I dont know what, if anything, I can do? Does anyone have similar experience and if so, what did u do? I feel hopeless. Cant carry on like this :(

7 Replies

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  • Sorry to hear how awful you are feeling. Just wanted to say that you will get through this , it just doesn't feel like it when you are in such pain. Could you ask your GP to refer you to an endo specialist elsewhere? We don't have to put up with shoddy treatment. I'm travelling 2 hours away for my lap in April. Take care. X

  • Go see another consultant. Don't let them waste your time on time wasting schemes they seem to think will help. I know it will be time waiting for another consultant but it sounds like it would be worth seeing someone who knows what they are doing more. Sorry you have been fobbed off, I was too by my old gp yesterday, I moved gp surgeries the same day. X

  • Is your GP any good? If so make an appointment to see them. Tell them whats happened and how desperate you are. Ask your GP to write a letter to the consultant asking them to do further investigations and treatment. It would be beneficial if you can get your GP to fight on your behalf.

    If your GP is not much use, contact the hospital PALS office and explain whats happened you.

    It seems really difficult to get Laparoscopies on the NHS at the moment. And in my opinion hospital doctors seem very reluctant to listen to their patients. It is so frustrating.

    The pain clinic referral isn't a bad idea. I am just going to be referred to one.

    I am sending you massive cyber hugs. X

  • I would demand to see another doctor if I were you and refuse to leave until you feel like they have tried to help - we pay for the NHS, we are paying the doctors to perform a service and we shouldn't let them bully us into allowing them to wash their hands of us - you wouldnt let a plumber walk out half way through a job fully paid so don't let the doctor away with it!! This makes me so mad, I too have been fobbed off left right and centre and I'm so sick of it!!

    In addition to asking for a new consultant there are some things you could maybe try at home that might help alleviate some of the pain (albeit only slightly). Iv found that 30mins of exercise at night followed by sleeping with my feet up on a pillow and with a hot water bottle on my belly seriously reduces pain during the night and helps me sleep much better. Also,I have given up all foods that are high in fat, salt & calories (to reduce weight and bloating) - no more pizzas, white carbohydrates (ie white bread, rice etc) no more takeaways, chips, crisps, fizzy juice, etc.... I feel better for doing it, not sure if its actually reduced my pain physiologically or if its more psychological - I feel more positive for taking an active part in dealing with my pain which makes me happier :) I also take Califig every night to keep me regular as I'm sure you know being constipated almost kills me with pain!

    Not sure if any of this will help you but I hope some of it might. Stay positive and keep in mind that we are all here if you need help or support :) Good luck x

  • Go straight to your gp and state you wish to be referred for a second opinion, by law you are able to request this and it may take a while in my case 3 months. Also call your current gynae and ask for a copy of the letter she will be sending to your gp. Keep it on file. Good luck! Let us know how you get on xx

  • Totally agree - GPs tend to refer you to whoever has the title 'Gynae' at the local hospital - but they all have such a wide range of specialisms and some really are 'general' with a broad spectrum of knowledge but not specialising in particular. Best to see someone who has chosen to become an endo expert with up-to-date knowledge and enhanced skills relating to endo. Excision surgery is the most satisfactory way of treating endo at the current time, with radical excision being the best.

    It does feel like a minefield out there of mis-information and consultants with differing degrees of skill and knowledge and treatments. This is something you certainly don't appreciate when you first get referred to the local 'general gynae' by your 'general' practitioner.

    All best wishes x x

  • Hi DeterminedSurvivor79,

    Your gynaecologist sounds seriously out of her depth and lacking in knowledge of endo or how to treat you with respect. I think she is best avoided. You need to get to see and endo specialist as a general gynae dos not always have the skills to diagnose or treat endo.

    Try to convince your GP that you need referral to an endo specialist. You have the right to choose who you see on the nhs. Find one nearest you here: bsge.org.uk/ec-BSGE-accredi...

    or a provisional centre here:

    bsge.org.uk/ec-BSGE-provisi...

    I don't consider this to be a request for a second opinion but just a request for the appropriate specialist for your condition.

    Have a good look at the Endo UK site for more information and guides and print out anything that will help convince your GP. Your GP will have to have a very good reason to refuse. Don't take no for an answer. If you have no joy, change GP.

    In the meantime try to take care of yourself. You sound in a bad way and my heart goes out to you. Your alias is 'Determined Survivor' and I believe you. xxx

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