Endometriosis UK
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In the Dark

Hello all, this is my first time here. I'm a 21 year old with a job, and university, in the UK.

The first time I went to a doctor about unusual pain was when I was 13. It got no investigation, and I was put on birth control. The second time was just over a year ago. I went in with all my symptoms written down, and was referred to the hospital.

6 months later I got a letter about a hospital appointment. 2 months later I got an appointment, and went. Then had a transvaginal ultrasound.

The doctor there said "well our general procedure now is the IUD implant."

And that was it.

I was told there would be results but never recieved them. Called the doctor, they said the hospital would have them and vice versa.

Meanwhile, I'm still sat here bloated and in pain. And as I feel a bad period approaching, I don't know what to do. I don't know for certain it's endo - although it is extremely likely. Two of my maternal aunts have it, and the doctors all agreed I 'probably' have it.

I have been bloated 24/7 for a year. I look pregnant. I was a size 6/8 before this and am now wearing ill-fitting 10-12 because of my stomach. I used to only bloat around my period but now it just... won't go away. No matter what I eat. I don't care much about clothes sizes but this has knocked my confidence massively. Just because one area of my body has changed so quickly.

I've been trying gluten free for almost a year and the only difference is it doesn't cause discomfort after I eat anymore, but I'm still bloated.

1 Reply

I would contact the advisors at 'Endo UK' they host this site on 'Health Unlocked.

My understanding is that your Gp should get a copy of all results, test results, letters etc. ... but also that you should also be given these at the time of your consultation, or as soon as possible after.

It is not acceptable for the GP and the hospital to be saying they don't have the results. Talk to the 'Endo UK' people, as there is actually a very strict protocol that GPs and Consultants are supposed to adhere to with regards to Endo, and it does not sound like it is being followed in your case. While a transvaginal ultrasound can see some Endo in certain places, eg ovary and the nearby ligaments, this is not enough for a full diagnosis of the severity of your Endo (Eg what types and where it is situated), as that can only be ascertained after a full, detailed laparoscopy.

While it sounds like you will have to get very firm with your medics, do talk to the Endo UK people.

Sorry I can't be more helpful, but I hope this helps a little. Nb Maybe also post on here in the week, as replies tend to be a bit slow and thin at weekends.


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