Getting a diagnosis

Hi,

I'm 17 years old and have symptoms of endometriosis for 6 years. It started of with migraines, sickness and painful periods and have progressively got worse to the point where it affects my day to day life. Due to it being undiagnosed I missed out on a lot of my exams, time in school and college to the point where I failed as I was unable to sit in the exam. After my most recent appointment to the doctors they have agreed to refer me to a specialist.

The symptoms I have;

Hot flushes

Painful periods

Day to day pain (unbearable to the point where I have a panic attack)

Nausea

Vomiting

Fatigue

Due to my age they are very reluctant to do any test.

Has anyone else having the same problem? How can I make them see that it really does affect my day to day life to the point where it's impossible to find work due to being unwell all the time.

Does anyone else think that the symptoms I am showing are signs of endometriosis as I don't want to be fobbed of with them saying no.

Thanks Courtney

7 Replies

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  • Hi Courtney,

    I am so sorry to hear you are going trough so much pain and at such a young age, it must be a lot to deal with.

    You sound like a very intelligent and assertive young lady and I would say you are on the right path to getting to the bottom of what is causing you all this pain, your symptoms certainly match those of endo, however as I am sure you are aware these symtoms are also very common to other condition so I am really pleased you have been refered.

    The best advice I can give you is to go to your appointment prepared, write down all your symptoms and try to keep a diary that can really help the consultant.

    wishing you all the best of luck with your referral and don't forget you can always come on here if you have any questions, the lovely ladies here always have some really good advice!!

    L xxx

  • Thank you so much for your reply. It means a lot to know that others also match my symptoms to this illness as I don't want to be fobbed of I have been for 6 years enough is enough and I am going to fight for my diagnosis!

    Thanks Courtney xxx

  • Good for you, like lily at said write down all symptoms and descriptions of pains and diary, I did this and actually asked my doc gyne to read it I said I didn't want to forget anything and had been preparing thus letter for a month, he read it and asked questions from it, much better than trying to get it all out correctly in 10 mins.

    What is your daily pain like and where,

    Read Lindles posts if you haven't and take bits from it to question him about, you are not to young to have a laparoscopy or to be treated for endo,

    Good luck xx

  • Hi,

    I'm 22 and first went to my GP aged 14 with symptoms. At first it seemed they were saying they were reluctant to do any tests until it got to the stage where I was trying to get pregnant and couldn't. Also, until recently I wasn't in any kind of sexual relationship so for some reason because I couldn't answer questions about whether it caused pain or bleeding during/after sex, they also wouldn't test. Because it wasn't stopping me getting pregnant or causing problems for my sex life it seemed like they weren't willing to do any tests! Despite it causing problems with so many other areas of my life. Just don't see the logic! Finally last month they referred me for scans, to be honest I'm unsure of what finally made them do it other than the fact that it has now been 7 years since I have been going to my GP about symptoms.

    It's good that you have been referred to a specialist though, that definitely sounds like a good step. In terms of having tests done, I'm afraid I don't really know what to suggest. My only suggestion would be that you say outright that you want such and such tests done, for example, say to them that you want them to refer you for abdominal and transvaginal ultrasounds. Ultrasound isn't really the most reliable way of diagnosing endometriosis but it's a start and probably the least invasive testing. Hopefully though, you won't have to ask because the specialist will do this anyway.

  • I'm hoping that they will do tests without it being too much of an issue. As this isn't much more me and my partner can deal with.

    Thank you For your kind reply wishing you a pain free day xxx

  • Hi there im only going by myself, but I use to get migraines and have statted tocome back, this sounds it could be but the only way to really know is laposcopy by a gynecologist, it does affect every day life , but kerp a diary of days and symptoms and when you go there this may help, from sweats to periods x

  • Hi forgot I was diagnosed at 19 xx

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