Shocked!

[Xroisinellenx]

So I received a letter yesterday explaining the outcome of a meeting about what my next steps were after my last op.

In the letter it showed a breakdown of what was found in my mri which was done in March last year since then I have had an operation last year at this hospital and also a meeting with an endo nurse at the end of last year.

In the letter it said I had adenomyosis, at no point did anyone tell me this! I don’t no if this is just me being funny but I really think someone should have mentioned this!

Am I being a bit crazy? I don’t no if I can trust this hospital with my health anymore!

[Thecraftyadder]

I think that's terrible. So they've known you have adeno for about 10 mths, not told you, performed surgery on you and you find out by reading it in a letter?! I'd certainly be putting in a complaint to the hospital about that.

Is your GP alright? I'd make an appointment to talk to them about it and what your options are with getting treatment elsewhere.

[newstart2020]

Hi, I'm sorry you heard news about your health in that way. We really do get completely patchy care and information from our health providers. I just found out I have adenomyosis in December last year, I've had stage IV endo since the early 2000s and doubtless had endo since the 1990s. The adeno showed up for me on an internal ultrasound and the consultant I had took the time to show me it on the screen scan. Apparently with adeno, health professionals (I thought in the past) didn't bother to tell us that we had it because -get this- they couldn't do anything about it, there was no treatment for it other than hysterectomy. I've started asking for copies of every treatment and scan result that I get. I went private for a few scans and hysteroscopy and it was very easy to get the consultant's secretary to email me copies. I've also gone to the lovely reception staff at my GPs and got hold of copies of a lot of my medical history. They even dug through my file to get me copies of surgeries I had had in 2004 and 2005. If you ask them, they are obliged to provide you with copies under the Data Protection Act or some such, and I only had to wait a week. I'm probably kidding myself, but I've just got a new mirena coil put in (the one that was in place for 4 years was out of position) to see if it helps with adeno symptoms. If it doesn't, I'll be putting myself on a full hysterectomy waiting list, regardless of whether health professionals say I should just wait formmy menopause to finish or not... Really hope you get the information you need and now that you know they hold back, you can ask for copies of your notes directly.

[Christin_a]

100% should have told you. Its you're body and health so you need to know what's going on.

I'd complain to PALs at the hospital your at that they didn't give you important information about surgery/mri. They can look into it for you and raise your concerns and see what's happened. Unfortunately it won't change that you weren't told but it could stop it from happening to someone else.

[Afrohair]

They don’t always know you have that type till they go in did they not tell you after the op did you ask their findings then?