I am so frustrated about this and don’t know what to do anymore.
For 20+ years I’ve been back and forth to the same gynae department for various gynae issues. Since 2013 I have seen the same gynaecologist every year for various treatments and scans. I have had around 5 hysteroscopies during which recurring uterine polyps were removed. I was always promised these would not grow back but they always did. I had to have one lot removed via day surgery as there were so many which could not be reached via hysteroscopy. I became so anaemic that I needed iron infusions due to such heavy periods. I keep all of my paperwork so know I have had some kind of procedure every year since this date.
Eventually, in 2022 I opted for a uterine ablation. That did solved the heavy periods but I have just ended up swopping heavy flooding for immense pain and my gynaecologist concluded that I had ended up developing Post Ablation syndrome having assured me pre-procedure that this is extremely rare (since found out it is not rare at all).
So December 2023 I asked for a mri to find out exactly why I have this awful period pain. Turns out that I have deep endometriosis and diffuse adenomyosis. Gynae is not an endo specialist so referred me on.
I have seen the endo specialist who stated that I shouldn’t have had the ablation as it has allowed the endo to penetrate the uterine walls and therefore develop into adenomyosis. I am so upset especially as I now face a laparoscopy which has a very long waiting list and I won’t be seen until at least early next year. I am now left struggling with pain management. They suggested the mini pill which is making me feel awful with unpredictable bleeding (I’m in pain every time I bleed as there is no where for the blood to go because of the ablation scarring).
I started a thread on this a few months ago and many suggested complaining to PALS. I did this and whilst they were very helpful they then passed the info onto the management team at the gynae department. I had several telephone calls from the manager who, whilst very pleasant, could only state they were sorry and would ‘make notes’ so they can learn by this! That is great for future endo sufferers but doesn’t actually help me right now.
I have to say that I am also not overly happy with the Endo specialist I’ve been assigned. Although, in all the previous years I have had the same gynaecologist (who was a pleasant guy). I have only once had any dealings with my new gynae. This was during a telephone consultation with him back in 2020 during lockdown. No idea why I ended up with him for that one off call but I found him to be extremely brusque and quite rude, he didn’t allow me to talk or ask questions, he spoke over me during the very short telephone conversation. The manager stated that this gynae offered me a laparoscopy during this conversation but I declined. I genuinely do not recall this and I have no post consultation letter from this telephone conversation so nothing in writing stating this (I have kept all of my paperwork from gynae over the last 15 years and usually receive a post consultation letter following most appointments).
I have asked for a copy of the post consultation letter but they have failed to do so. Anyhow, because of this conversation I feel that they are basically saying that I was offered the chance of a laparoscopy back then which could have picked up the endo and therefore avoided the situation I’m now in but this was never mentioned or discussed by regular gynae and he never once suggested checking for endometriosis or adenyomyosis or mentioning the offer of a laparoscopy by the other gynae yet I notice there is a suggestion of possible ‘small adenoma’ on the ultra scan results I had which was arranged by the telephone gynae in 2020. Surely that should have been followed up?
I honestly don’t know what to do anymore. Do I just plod on in pain every month and wait patiently for this next year to get this laparoscopy and excision surgery or push them to expedite my laparoscopy? I hate complaining, I’m a naturally very quite and passive person but I just feel they cocked up and have just left me to it with band-aid/sticking plaster treatment until I can get the op.