Knowing "where" your endmetriosis is

The more I explore this forum, the more I see people referring to having certain types of endo/in certain places ie "on the uterus wall" or "recto-vaginal" or whatever and referring to their endo as being a certain stage.

I was originally diagnosed just over two years ago, when I was still a student. At the time, I was covered by my dad's health insurance because I hadn't graduated and therefore went private (after years of going to my GP, going private was the only way I had ever got taken seriously - nothing against the NHS but it's worth taking the time to say it's a bloody lottery as to whether your GP gives a crap!). I had an ultrasound but they were unable to do a transvaginal one because it was too painful, so they did that whilst I was out for the laparoscopy. When I came around, the consultant told me I had "significant and advanced endometriosis around a lot of areas and that my ovaries were fused to my kidney tubes" - this is what I remembered her saying. She had pictures from the op but I had absolutely no interest in seeing them at the time - however I never questioned anything as I trusted her and didn't know enough about the condition to know that there were 'stages' or specific 'types'.

Now that my symptoms have returned (they aren't nearly as bad as last time, but I can recognise them coming back and want to jump on them before they get too unbearable as I am self-employed now and can't afford to take any time off as I can't defer things like I was able to as a student), I have since graduated and am no longer covered on health insurance, so have been going through the NHS. As far as I was concerned, the private hospital had send a letter with all my details to my GP, but this apparently isn't showing up on the system. So I had to describe everything that I've previously been through as best I could and I just felt really ill-equipped to be able to describe the severity of my condition because I'd never been given any proper lingo for it apart from "it's bad endometriosis" and it only occured to me today that the NHS consultant has whapped me straight back onto a second round of prostap only going off of one spoken appointment off of what I've been able to say of what I went through before and what my current symptoms are (the main ones being bad sex pain, much worse pain than before when I was on microgynon breaks and frequency urinating, fatigue and the odd bit of pain over the last 6 months - I'm luckily not back to the stage of constant pain all the time yet). No scan has been done yet and they were unable to complete an internal examination because I was in too much pain so now I'm a bit worried that this all seems a little rushed?

I wondered if anybody thinks that this is a little strange, and also how I would go about obtaining all of the records of my treatment etc the private hospital I went to has in their files so that I have a copy of everything concretely that I can then show in subsequent appointments? There must be some sort of freedom of information thing that would allow me to be able to do this? Two years ago I was scared and was happy to go along with what the consultant said and figured everything would be in good hands but now I feel that it would be useful to have all the info about my own condition that I can get my hands on because it seems that the consultant was a little patronising in her explanation before? Thoughts appreciated!

2 Replies

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  • I have a copy of the Lap results letter and other letters that were sent to my GP from the NHS Gynae Consultant (which I find useful to have!) I assume it would be the same if you went Private? Something must have gone wrong for your GP not to have them.

    I would either chase it up with your GP's and see if they can sort it out or if not with the Dr you saw Private's secretary. As far as I know you are totally entitled to see your notes.

  • Yes you are entitled to copies, and you shouldn't need to make a freedom of information request either, but you will probably be charged for copying, postage and packing. Definitely contact the hospital where your op took place and request your records from them.

    I wouldn't mention paying, just ask if they can send full copies to your GP as you are now expecting to have a new endo surgery and you have been informed the GP records from the previous op are not complete.

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