I am now having second thoughts due to a comment my friend made yesterday.
So, I am almost 51. Since the age of 12 I have had nightmare periods, days off school, ruined clothes/bedsheets/mattresses etc, years and years of anaemia.
I was first referred to gynae when I was in my late 20’s. All of my gynaecology appointments have been at the the same hospital and with (mainly) the same gynaecologist.
I had a d&c in 2000 and was told this would sort the issue but it didn’t. I then had a few fertility tests over the next few years as we struggled to conceive. I was lucky to go on have two dc (without any intervention) at the age of 32 and 35. The period issues never got better after childbirth, in fact became worse.
The period issues became worse in my late 30’s and I was re-referred to gynae from 2015. I have continually had appointments and/or procedures every year at the same department, in the same hospital. The periods just became heavier and heavier, terrible painful ovulation (which I have suffered from since my 20’s) which lasted 7+ days and iron levels so low that I needed infusions (ferritin fell to 3). Over this time it was discovered via ultrasound that I have uterine polyps, I have had these removed 4 times via hysteroscopy (4th in day surgery) and told they wouldn’t return but they always did.
Eventually I requested a uterine ablation, I asked a ton of questions beforehand though as I was concerned about post ablation failure. Was reassured by my gynae this was very rare. He even ‘joked’ with his nurse when I went in for the pre assessment that ‘oh, this is the lady who asked so many questions haha!’, this made me feel like a right twat tbh but I just laughed it off.
The ablation went well and 6 months post ablation my periods became non existent. Great, so I thought. However, each following month during the time my period was due (I still have some light spotting) the pain has become more and more intense radiating through to my hips, lower back, upper back and abdomen. It is such an awful pain which lasts 5+ days. I am gutted that I have exchanged flooding periods for painful ones. I kept being told to put up with it and it should get better. It didn’t.
A year on (last December) I saw the gynaecologist who has confirmed (after a clear us scan) that I have indeed developed Post Ablation Syndrome and his advice was to take pain killers. I wasn’t particularly happy with this so asked for a MRI scan to see exactly what is going on. I said I wanted to check all was ok as the pain is awful and my sister was diagnosed with endometriosis at the age of 45 (at same hospital). I had mentioned my sister’s endo diagnosis previously but it fell on deaf ears (I have read endo can run in families). I didn’t push it as I thought they must know, they are the experts?
My mri results have come back with ‘Deep endometriosis and diffuse adenomyosis’. The gynae rang me just before Christmas to let me know and to advise he was discharging me and referring me to the endo team. I rang them and they have informed me it’s at least a 40+ week wait just to see someone for initial consultation.
I can’t lie. I am thoroughly pissed off. Continued yearly appointments at the same gynae clinic since 2015. During that time I have seen this gynae regularly and 3 others and not one of them had suggested the possibility of endometriosis. I have kept all my paperwork and have notice a comment of a small ‘possible’ adenomyosis was mentioned from a US scan I had back in 2020, no one mentioned this to me and yet I was allowed to have the ablation, I have since found articles online stating women with adenomyosis are not great candidates for ablations as this can exacerbate the condition.
In January I paid to see a local Endo gynae privately (I really can not afford this but felt I needed as much info as possible). He was taken aback that I have been under gynae for 20 odd years and never been investigated for endo, he said the average is around 10 years! He said he can perform a laparoscopy but it’s £7400, I simply can not afford that so do still need to be seen by the NHS.
I am not a natural complainer, I hate making a fuss. I am a quiet person but I’m so upset and feel overlooked. So I have raised a complained via PALS. Not because I want any compensation or the like, it’s nothing like that. I would just like an answer as to why, after so many years, no health professional has ever thought to suggest endometriosis especially after I mentioned my sisters’ diagnosis (hers was traumatic as they told her the mass on her ovary was OC but luckily turned out to be endo). It’s all I want, answers. I feel sad that I could have had treatment for this years ago and it would have saved me many other hospital appointments and uncomfortable invasive procedures. I have had daily gut issues all this time too which I’m now told could be endo related, I’ve had gastroscopes, colonoscopies etc all unpleasant procedures.
Since the complaint I have had a call from the Endo team offering me a consultation appointment in May.
I was telling my friend all about this and she says I should drop the PALS complaint, she says I am now in the systems and as such ‘the ball is rolling’ (fwiw, she has never had any gynae, digestive or indeed any health issues).
She’s made me stumble now though - Am I making a bigger thing of this than necessary? I hate to use the word gas lit as I do think it’s an overly used phrase but I can’t help but feel that I have been all these years. I feel that in all sense and purpose I have been told to put up with my issues because that’s just what some women go through.