I’ve been really stressing over something which is kind of eating me away atm and I’m not sure if I should just take a step back and relax about the whole thing or get angry?
I could really do with some advice.
Bit of a long story and I apologise in advance and will try to condense it down.
I am almost 51 and have suffered with gynae and gut issues for decades. I’ve been back and forth to gastro and gynae for all of this time (first appointment with gynae and gastro consultants was around 1998).
Over this time I‘ve had endless consultations, so many US scans I’ve lost count, 5 hysteroscopies with uterine polyps removed (very painful), and also 1 day surgery to remove the ones which were difficult to remove via hysteroscopy.
Over the last 8 years (I’ve kept all of my paperwork) I have had some kind of appointment, scan or procedure during every one of those years right up until end of last year.
Early 2022 I had a uterine ablation which has failed and resulted in post ablation failure syndrome. This has left me in a lot of pain (despite my gynaecologist assuring me before the procedure that it’s very rare to get this and even laughing at me for asking so many questions before the op).
I have also been back and forth to gastroenterology during this time as I have daily, all consuming digestive issues and despite spending £’s on private help for this issues and trying everything suggested, I still have daily issues. In the last 4 years I have ended up having 2 x colonoscopies (not a pleasant experience), 2 x gastroscopes with biopsies, a pill camera endoscopy, stool tests and blood tests (some of these I have paid privately for which I really cannot afford).
Before going on I need to say how very grateful I am that I have had many tests and procedures on the NHS. However, if they had checked for the condition I actually have, many years ago it would have saved a lot of money (both out of the NHS pocket and mine).
So in November I asked for a pelvic mri to find out what is going on with the pain and post ablation syndrome. The results have come back with diffuse adenomyosis, my left ovary stuck to my uterus, deep endometriosis (gynae has said this would have been going on for years and most likely contributing to my digestive issues). He has said I will eventually need a full hysterectomy due to the diffuse adenomyosis. This pisses me off because I have looked back on my records and have found mention of a small, 7mm adenoma following a us scan back in 2020, yet no one recommended any treatment for this or even called me back to discuss it, could this have prevented my diffuse situation and need for hysterectomy?
My gynae has referred me to the endo team and has diachged me from his care. Just found out the wait to see them is around 8-12 months and that is just for the initial consultation. Laparoscopy will be a while and a wait for hysterectomy is around 2 years +.
I really want to cry, I am in so much pain for at least a 7-10 days during my period and have so many gut issues which have completely affected my mental health over the years.
I am so upset that no doctor or consultant has ever suggested endometriosis despite my sister being diagnosed at the age of 44 (she too had years of being told it’s IBS) and me explaining this to them all over the last few years.
I feel as though I wish to send a letter of complaint to PALS. I am not a complainer and have never complained about my health care before but I’m so upset it has taken so long to reach this point and from everything I am now looking into I see endometriosis is one of the most undiagnosed or late diagnosed conditions in healthcare. So many young girls and women being told they have to put up with their issues and dismissed.
If I do write a letter of complaint, it’s not because I want anything for myself but for women experiencing this in the future, for young women like my 15 year old dd who has awful periods. Now I’m wondering if she has inherited this condition, will she have to put up with awful periods for decades like her mother, or her auntie or Nan (mum had awful periods too, maybe she also had it)?
If I do write to them, what do I say? I’m useless at complaining and not too grand at compiling letters either.
Or should I just sit back and wait? WWYD?