After a life time of gynae issues and many uncomfortable gynae procedures and perimenopause making everything a million times worse 4 years ago, when I was 49, I chose to opt for a procedure called a uterine ablation which burns the lining of the uterus. This was supposed to prevent any further excessive bleeding. By the time I had this I was very iron deficient and needed iron infusions prior to the op.
Before this procedure I’d had many ultrasound scans and was only told about uterine polyps and the thickened uterine lining. I asked my gynae many questions about the ablation as I was very apprehensive about it all especially as there are several Facebook groups dedicated to women with failed ablation syndrome. He assured me this was a very rare outcome and he was an expert in this field and sent me lots of literature stating the safety of such a procedure.
So I placed my faith in him and had it all done early 2022. However, 6 months post-op I was experiencing no bleeding during each period but the pain was horrendous. I’d never had period pain before only very heavy bleeding so this was new to me and not at all pleasant. I put up with it for a year then went to see him end of 2023. He simply shrugged said he was sorry but it looked as though it was post ablation failure and told me to take pain relief. I was not happy with this so asked for an MRI to find out what the hell was going on. He called me Christmas Eve 2023 to let me know that I actually have endometriosis and diffuse adenomyosis and he was going to have to discharge me from his services and refer me over to the endo specialists at the same hospital.
To say I was shocked was an understatement especially when upon research I note that uterine ablations are not best performed on those with adenomyosis as it can exacerbate things further. I then registered for online medical records and discovered an ultrasound taken in 2020 showed a small area of potenional adenomyosis, this was never discussed with me at all. I complained to PALS but was given the generic ’Sorry, we will make sure this never happens again’ crap.
My pain continued at each ‘period’ until a few months ago, I’m 53 now and believe that I am now going through menopause and hopefully not experiencing a monthly cycle and therefore no more pain. However, I have been on a waiting list for a hysterectomy and excision surgery for the last year (with my endo gynae). I had a mri done privately last month which still shows the adenomyosis although this now states mild and not diffuse and no mention of any endo anymore. I’m kind of hoping this means my hormones have stops going crazy and therefore no longer feeding these two conditions. I have my hysterectomy pre-op this week but I absolutely can not go through with the operation, my mental health is so poor (for various reasons) that I am afraid I will end up with a breakdown if I have to go through with this. I have sent my mri results to my gynae and have a telephone conversation with him at the end of the month, not looking forward to it as he has zero bedside manner and not an easy man to talk with.
I’m just still so angry that I have to go through all of this because my original gynae failed to detect a very common condition which is not at all rare and effects so many women. I don’t know how to get over that anger or the terrible fear I have of hospitals and operations. I feel my trust has been completely broken now and I am scared to put my trust in any of them at this hospital (which doesn’t have good reviews at the best of times!).
I don’t know what to do anymore.