I really need some advice as I am crap at complaining but feel I have been overlooked when it comes to this health issue of mine.
It’s a bit long but I don’t want to drip feed.
I have just been diagnosed with endometriosis at the age of 50 and this discovery was only due to the fact that I requested a pelvic mri because I am suffering from a failed endometrial ablation that I had done 2 years ago (even though my gynaecologist had assured me ablation failure was extremely rare, I’ve since found out it certainly isn’t).
Since the failure I have been in a lot of pain so asked for the mri to check what was going on (gynae just wanted to discharge me with advice to just take pain relief).
Late December ‘23 the results came back, (the images were reviewed by a consultant radiologist who specialises in detecting endometriosis) with a conclusion of deep endometriosis with nodules around my colon and rectal area (I have also struggled for decades with daily gut issues but always told by gastroenterologists that it’s ‘just’ IBS). The scan also showed I have pelvic adhesions, all suggestive of deep endometriosis. I also have diffuse adenomyosis which I’ve since discovered could have resulted from the failed ablation.
My gynae subsequently discharged me from his care (with a prescription for the mini pill to tide me over) and referred me on to the endo team at my local hospital. I contacted them to enquire on waiting times and have been told as I am a new patient and therefore ‘starting from scratch’ it will be at least 40 week wait and that is obviously just for the initial consultation.
The issue I have with this all is that whilst I am obviously new to that department I am not a new to gynae and the endo team is within the same department. I have been under their care since 1998 when I first started going to the doctors with my ongoing gynae issues.
I have been seeing my gynae every single year since 2015 and during that time I have had 4 hysteroscopies to remove recurring uterine polyps, had one day surgery op to remove the stubborn polyps, endless us scans and the uterine ablation in 2022. Not once did the gynae ever suggest endometriosis even after I told him my sister had been diagnosed with it, 5 years ago.
After I discovered the waiting time is so long I scraped up the money to see the endo specialist at my local private hospital. I met with him last week. He could not believe I have waited 20 years for diagnosis, he says the average is 8-10 years. He says I will need a laparoscopy so he can excise the endo and then get a good idea exactly what is going on in there. This will cost £7400 privately. I absolutely can not afford this, so I will need to stay with the NHS.
But I’m so upset that it will be at least another 6-9 months and probably longer (my dsis has had thyroid surgery postponed twice at the same hospital, she’s been on the waiting list for over 2 years).
I absolutely hate making a fuss (especially to an already broken NHS) and I am not a natural born complainer but I am seriously considering contacting PALS to see if they could at least help to push to expedite my consultation, if nothing else.
This has been going on for so long, I feel like shit every day and am worn down by the pelvic discomfort and pain (especially since the failed ablation is causing more pain) and nothing is easing, I feel that perimenopause is exacerbating everything. The daily digestive issues are certainly not helping either.
I feel over the years my super heavy periods and pelvic pain (passing huge clots, flooding out on my clothes and making me so anaemic my ferritin levels fell to just 3 leaving me needing infusions, which again I had to push for) we’re all palmed off as being ‘normal’ that sometimes women experience this, as though it’s something women just need to get over.
But it was bloody undiagnosed endometriosis the whole time.
So would I be out of order sending a ‘gentle’ letter of complaint?