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Endometriosis UK
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Got hospital appointment

Finally got my referral date through which is in about 3 weeks time. I was referred a few years ago, they did a couple of ultrasounds and said that I was fine. I'm really worried that it's going to be the same thing again. Any tips on how not to get fobbed off?

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Hey,

Sorry to hear that you have been fobbed off before! It can be so frustrating, i know exactly how you feel!! What are your symptoms, if you dont mind me asking? Did they mention Endo to you last time or give you anything like the pill to try help with your periods?

Hope you get sorted soon :) xx

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Endo hasn't been mentioned until recently by my GP. The last time they were thinking more along the lines of cysts, they did an external and internal ultrasound and said that it wasn't a gynae issue and to get referred to gen surgery. I didn't push it as i didn't feel anyone was really taking me seriously. The pain has become really bad again and much more frequent so i went back to GP and she agreed that it looked gynae so she's referred me again. I get really localised pain during ovulation, which can flare up referred pain down my thigh, the fatigue is unreal. I'm a zombie every other week thanks to ovulation and my period. Period is irregular in that for example just past it wasn't that painful and only really lasted three days but then next time it could be late and last a week in agony. Would always be very clotted. I get rectal pain and I was diagnosed with IBS about 10 years ago. I just don't want to go to the appointment and be made to feel like it's all in my head again.

Thanks for replying!

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Hi Ash,

I've been in that situation plenty of times. Been fobbed off numerous times, the same as for you they made me feel like it is all in my head.

Don't stop persuing what you are intitled for, you are intitled for health checks and right attitude towards you, the same as referrals to gyno. Stick to your guns.

Don't let no one to put you down especially people who does not understand how you feel.

I nearly give up myself, I was so close to choose to live in pain than made to be crazy feeling ignorance and nothing else from other people's side.

Good luck to you with everything and I hope that all goes well for you.

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I was in a very similar position to you and was so worried about been fobbed off. My only advice is to put your foot down. It can be the hardest thing in the world to do, after all you are brought up to respect doctors and trust everything they say, but sometimes they are wrong. You know your body best and you know if this is more than just 'period pains'. I found it so tough to stand my ground. I basically said I dont want any contraception or any pain killers to cover up an obviously underlying issue. I will be happy to look into treatment once i know exactly what it is that im dealing with. They seemed to listen to me once id said that.

Make sure you explain how debilitating your symptoms are and that it really is affecting your life. Stand your ground and dont let anybody tell you that its in your head. You deserve answers and pain free life.

Best of luck :) xxx

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I feel exactly the same, I would gladly live with the pain if someone can tell me what was causing it. I really just want answers. I am ovulating this week and had to go home form work because the nausea was so bad.

Thanks for getting in touch, I really appreciate it.

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It's awful that this happens to so many people. As hard as it is, you need to be really assertive with the medical professionals, and make sure you tell them everything, write it down before if it helps. I found this helpful as I knew I'd be discouraged from my chosen course of action (hysterectomy). I wrote down all my reasons, all the drugs I'd tried etc. It's still in my notes now and they couldn't argue. Being prepared really helped. Also take someone with you if you can, they can help you out across how bad things are.

Hope you have a more positive experience x

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Thanks for the advise, I was thinking about making a list to take with me so i don't forget anything!

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Hope it doesn't sound patronising!! I've gone in the past and forgotten everything!

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No not at all, it's so easy to forget once you go into the room!

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Hi ash32

Here is our information pack which has lots of information about getting a diagnosis.

endometriosis-uk.org/sites/...

Here is also a pain and symptoms diary. It may be worthwhile filling it in as It can help you to remember details which can assist in doctors being able to diagnose what's going on.

endometriosis-uk.org/sites/...

I hope this helps

Louise

Endometriosis UK

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Thanks Louise, I really appreciate the documents! I get a good read over them so I can be prepared!

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