Endometriosis UK

Booked A Doctors Appointment

thank you for all your advice from my past post about getting a diagnosis peeps.

As my doctors are forever choco block i’ve finally booked an appointment to see them, hopefully i will be able to get it through to them and tell them what i think. i changed doctors as my last doctor gave me gaviscon (sorry if i spelt it wrong) for the pain and i was like what the fuck, seriously? It was so ridiculous as i asked her if it could be endometriosis and she gave my gaviscon.

Any advice for what to say to the doctors as i’m a 16 year old with social anxiety and my parents don’t believe the pain i’m suffering they always think it’s an excuse for everything when i’m generally in pain.

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Hey, my parents don’t believe me either hun and think the same thing.

Write your symptoms down and questions you want to ask the doctor. Makes it easier to remember stuff then.

Don’t expect too much tbh, unless this doctor is amazing and understanding. They will probably just keep throwing contraceptive pills at you for now to see if that helps and different types of painkillers. They try and leave surgery as a last resort for people our age (im 18) as it can cause problems in the future with scar tissue etc.

I’ve been fighting for a lap for a year and still not got one yet. Since my doctor is going against an endo specialists opinion 🙄 like wtf!

Good luck and message me any time you need help or advice 💕 xx

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Well done on booking your doctors appointment - lets hope this one understands your concerns more than the last.

Have you looked at endometriosis-uk.org ? (it links to this forum so it is a reputable source) There's lots of documents and help on there including information for your age group (see the information at the top of the website) and under publications a consultation questionnaire. Those should get you sorted, you can print those off. There's also a "Getting Diagnosed" pack. I found all the information useful.

It may also be a good idea to start a diary of how you feel each day including pain levels and what part of your cycle you are in. I use a month a page thing. That means you've got something you can show to your doctor.

Just remember be assertive, it's your body, you know how you feel so push for a referral to gynaecology for further investigation; they'll need to do a laparoscopy to confirm endo as that's the only definite confirmation you can have for it.

As princessk09 says; they'll try other stuff before surgery with the idea of it will help. Yes the pill does help postpone problems but it has it's own side effects, as is the way for many chemicals. It won't get rid of the endometriosis, it just puts it in a state of hibernation until you stop it in the future. Also don't get worried about pressure for a hysterectomy; you're too young, and that isn't a cure; if any endo is on other organs in your abdomen it will still be there after.

Docs don't want operations as that cost money, they'd rather you be happy with chemical treatment...they also don't (I feel) tell you everything, the specialist does that!

I hope you find out what's causing you so much pain and that after you have some positive gp consultations your parents will come round to helping you cope rather than stressing you out xx

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I haven't been diagnosed yet (laparoscopy this Friday!) But the main advice I can give is to be persistent.

Depending on your symptoms I would expect a doctor would want to start with blood tests, urine tests and stool tests to eliminate other causes for your pain. I was around 14-15 years old when my mum first took me to the GP and have had cameras inserted in to various places, various scans and multiple blood tests, urine and stool tests but nothing was found to cause enough concern. I wish I had been more persistent and not listened to the doctor who said I was just "unlucky."

Doctors have certain check lists they have to follow before they can refer a patient for invasive treatment and I think a lot of the time some doctors don't take what we're telling them seriously. I know it's not going to be easy but keep calling them because if they don't hear from you they'll assume you're ok. It does help if your doctor is understanding but if you feel like you're not receiving enough support keep changing doctors until you find one who does. And be open with them tell them you have concerns you have endo and you want this investigated.

Do you have a friend or sibling that could go with you to your appointment?

It might be useful to write an agenda for your consultation that includes: all symptoms, how your life is being impacted, possible solutions like pain relief/ changes to diet and workout a plan for your treatment. I have an app that records my periods and the length of my cycles which helped me prove I have irregular periods. I also use a pain diary app, they're both free to download. I don't know if I can say their names on here but I can message you them if you'd like?

I hope it goes well!

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I am so sorry your own parents don’t believe you must feel quite isolated by that.

Good on you for changing drs- if they’re not listening or going to do anything no point in seeing them.

Keep pursuing till one does.

It can be a battle to get diagnosed with endo as so many symptoms can be other things.

I was trying for a baby for nearly 6 years and had known gynae issues 4 years- till the endo was found. I always suffered bad periods thinking that was normal until my early 30s. I did fall pregnant but lost the baby.

My fertility doctor was convinced it was bowel in origin pain until he operated and he is a highly qualified leading consultant.

Periods that disputes daily life are not normal and are not “part of being a woman”. I wish young girls were better educated over what is normal and what is not for periods looking back I had many tell tell signs from a young age.

My best advice is to take a pain diary- note the time of cycle and list the type of pain- this will help the gp.

Also have you tried going gluten and lactose free- these two are re known for making endo much worse. I’m not saying it will cure it because it Won’t but might reduce the amount of pain attack’s you get. My fertility doctor advised me to do this to ease endo symptoms.

I hope this GP listens to you. There is also nhs nice guidelines on endometriosis you can print off to show your gp- if they suspect you have endo they should refer you to a gynae.

I hope they can give you painkillers to make you more comfortable till you have a diagnosis. xoxo

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Hi Cha555lie,

You may find this pain symptom diary useful: endometriosis-uk.org/sites/...

All the best in finding the right doctor who takes your symptoms seriously x

Ugne

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