Frustration with doctors..how to get them to refer you to get a lap.

Hi, I'm 22 years old. I've had these symptons since I was 17. My mother and two sisters have endo, I've been going back and forth to the doctors for years now, I've been to see a gyno and had an ultra sound and they have both brushed me off saying its nothing or its IBS. My work is affected a lot and my daily life, I'm exhausted all the time that's my main problem. Sometimes I will lie in bed all day too tired to get up no matter how much sleep I have I'm still tired. I get the pain badly when I am ovulating and especially when I am on, but get random bursts of pain when I'm not on my period. I feel like the doctors are not supportive what so ever and they think I'm over reacting.. I have all the symptoms-Pain during intercourse, irregular bleeding, spotting, chronic pelvic pain, fatigue, dizzy, feeling sick, painful bowel movements. The list is endless, but they do anything they can not to send me to get a lap and I know that's the only way to diagnose endo, it took my sister 10 years to get diagnosed and you would think since then the system would of improved for women with this disease, but obviously not. I suffer with slight depression aswell and when I get endo pain bad I fall into a hole and it's hard to get out of, work stresses me out a lot as I am a civil servant they are strict with sickness absence and I am worried if they sack me because of my absences. I feel alone in this even though my sister suffers from it too and I can talk to her I feel like I'm moaning all the time and as hers is really bad she might have to get part of her bowel removed as the endo has attached to her bowel, I feel when I talk to her about it mine is nothing compared to what she is going through. If anyone can give me any advice or support I would really appreciate it, thanks xx

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Which gynaecologist is your sister seeing? The same as yours or a different one?

You are entitled to seek out a different gynaecologist and might do better getting referred to a specialist endo gynaecology centre next.

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

Lists the current accredited ones and yes it might mean travelling some distance to be seen but it would be worth it to actually get something diagnosed and treatment underway.

An ultrasound will not diagnose endo, it can only be done by a laparoscopy procedure and you need to be really pushy with this disease and don't wait for attitudes to change in certain medical people, because that isn't going to happen.

Although you do have family members with endo, it doesn't mean you do too, but your symptoms certainly would indicate that it needs checking out.

Meanwhile what hve you tried to do for the symptoms?

Have you tried different birthcontrol pills or the mirena coil?

neither of which needs to be prescribed by your GP, your local family planning clinic can provide either for you without you needing to see your unhelpful GP.

It's always trial and error trying to find something that offers relief of symptoms and what works for a while doesn't always last and you have to try something else.

it is a continuing battle to find ways to relieve symptoms and try and make life bearable.

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Hi thanks for replying to me.

I've tried pain killers but they don't seem to work, my doctor gave me the pill yesterday to help with my periods and at the moment too I am on the implant. I suffer really bad with exhaustion from it all aswell and the only thing I can do for that is lie down or sleep. My sister is with the womens hospital I'm not too sure exactly which gyno she is with, when you say your entitled do you mean I can ask my doctor or ask the hospital I want to see this certain gyno?

Thank link you've sent can I go through them and book into seem them?? Thanks for replying I really appreciate it x

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YEs you can name the gynaecologist or gynaecology department you want to be referred to. You probably do have to pay transport costs to get there if you don't choose your nearest, but if you can get to one of the endo specialist centres and they take on your case then that's the best bet for getting treated properly.

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Thanks very much

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The answer is don't let it drop. Keep going to Drs very time you are in pain or experiencing problems. Drs put me off having a lap for years and finally 10 years later I was diagnosed with severe endo. It's NOT good enough. The only way you'll ever get anything done is by making a nuisance of yourself!! You have to let them know this is a big deal of the effect this is having on your life and the fact that you demand answers!! I know exactly how you feel. Don't let them push you aside, you have to get tough with the Dr you have problems they need to fix! Or assist in fixing! Go for it and don't be afraid otherwise they'll fob you off forever and a day. I was too you f and too naive to question the 'experts' and it was only when I got a bit more mature I stood up nd said 'no more' it needed sorting , I needed to know what the hell was going on!! Good luck xxxxxx

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Thanks for replying to me, I just feel so fobbed off. They try and make every excuse to put it off, I researched last night how much it would be to go private to get a lap it said between £3-4000, that's why they keep saying no to me because they don't want to waste the money! How did you cope with your job when you went through all this? I feel quite silly as my endo hasn't been exactly diagnosed as endo so I'm telling work I'm off with pelvic pain, I just sound pathetic x

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I totally agree, just keep pestering the docs until they do something. Keep a diary, list all of your symptoms daily and tell them how badly it's affecting you.

Don't let them fob you off with having IBS, insist on seeing an endo specialist. If the GP has a practice manager you could try escalating the matter to them - explain that you are not getting the treatment that you need. This worked for me when my GP wouldn't refer me.

Good luck x

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Thanks for replyling, I think I will keep a diary and if anfter my ultra sound scan nothing is come of it I will escalate it to the manager of my surgery. Thanks

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Hi. I agree with everything everyone has said. You need to be listened too and something needs to be done to help. I got fobbed off cos the ultra sound showed nothing but an ultra sound won't diagnose endo..you would think by now drs realised this!

Don't feel bad that your endo is not like your sisters and that you shouldn't be moaning. Everyone is different and it is affecting you, your life that it is important and worth moaning about. I am sure your sister doesn't mind and is prob happy to be someone for you to talk to and vice versa.

Depression is an evil thing (speaking from personal experience) and is another unseen illness like endo so not understood. Perhaps ask your GP also to be referred to a counsellor? Will give you someone to talk to. However this is also a good site for releasing tension and getting support.

I wont say much more as I will just be repeating what everyone else has been saying.

I hope you get a referal soon and start to get a reprieve from the symptoms soon xx

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You would be best to go to the Wirral hospital where there is an excellent team who will take you seriously. You need to insist that your GP refers you there. I have found that endo makes you very thick skinned-keep on and be a bit of a nuisance until they refer you! Don't give up.

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Hello! Know exactly how you feel, I have had symptoms for 15+ years ! Always been treated for ibs, depression and fobbed off! Eventually it took me being taken into a and e in agony with burst cysts a few times for them to notice me. Still had to push for gynae referral then!! Must be pushy! My only advice, don't let it drop, I knew my own body and I was being too polite for too long. Eventually after many cancellations and problems right up to day of surgery I have had my laparoscopy perfomed and ooh shocker I have endo ! Also bladder problems, biopsies taken. Feeling relieved to finally know what it is and not just ibs ! Now will be looking to do diet properly. Staying in hosp tonight and bit sore, mostly my shoulders due to gas they put in.

Never think you are not important enough because you are ! And your pain is real never let them tell you it's not !! Although might not be endo there is still a reason behind it. Thank you for listening. You are all amazing and wonderful girls. Keep fighting xxx

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I have pcos too !

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So many of us have been where you are and it's not nice! All I can say is keep fighting, it took me 15 years to get diagnosed but I got there. I just kept going back to my GP complaining of the pain and other symptoms until the finally listened. It shouldn't be like this but sadly it is :( Good luck x

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