I’m having second thoughts about my complaint to PALS - was I wrong to raise this issue?

[Silverumbrella]

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.

same gynaecologist for last 25 years?

Thanks everyone. I will continue with my complaint. I would just like some answers as to why endometriosis was never thought about in my years of appointment and procedures. Why it’s been sitting there within my pelvic cavity for years (decades) and causing me so many issues. Surely any woman would want an answer to this?

My sister (and I) both have had a IBS diagnosis for years. My sister had a lot of extra pain around the age of 44 (now 49) and a scan found a mass on her ovary and as her CA-125 test was raised she was told probably OC. A 4 hour op later and removal of one ovary and tube was told it was endo.

has she also complained?

The appointment/treatment paperwork that I have kept goes back to 2013, it has consistently been the same gynae since that year. I may have seen him before that but in all honesty I can not recall.

This. PALS isn’t an official complaint but more of an informal way of addressing how you were let down. You were let down, and now you’re raising it and hopefully by doing so, processes will improve.

Carry on with your complaint - it may help others and hopefully it will keep your care in the spotlight.

FunnyFinch
No, my sister won’t complain, she isn’t the type. She has been waiting for the last 3 years to have a parathyroid tumour removed (same hospital), she won’t make a fuss about that let alone her gynae issues!

For the sake of every girl and women going through or facing this shit show of horror that you have suffered, please please PLEASE carry on to try to future proof and ensure that this stops.

You are not alone. This is an issue UK wide for millions of women probably.

Something has to change. By talking about it, actioning and putting yourself forward, you can contribute to the change.

This is horrific. You are right to raise this and keep following up.

Have you been in touch with any of the Endo patients' groups? That might be worth a look.

What an odd response from your friend. Ignore her.

I would be absolutely furious about this @Silverumbrella. Like you, I have endometriosis and I also suffered for years and years from horrendously painful periods and heavy bleeding. GPs told me repeatedly that was 'normal'. I learned to live with it.

In my 40s I had an episode of terrifying pain and a GP finally picked it up and sent me for a scan and a uterine cyst was diagnosed. I still then had a different GP at the same practice trying to wave it away as 'not a cyst, just constipation' and a diagnosis of IBS.

To cut a very long story short, it turned out I had Stage IV endometriosis. To get to that diagnosis I had yet another GP telling me to 'wait and see' before she’d refer me to a gynae, and in the end I had to pay privately for a laparoscopy - thank god it didn’t cost anything like the amount you’ve been quoted but it was probably half that.

It’s a total disgrace that women are ignored and gaslit over this issue. I hope your voice can be heard and I hope you finally get some decent treatment.

Thanks Brandnewskytohangyourstarsupon I will push through with it, my friend just made me wobble a little.

ILoveMyCatButHesAPervert Thank you. I have since joined several FB endo support groups, including our very local one. I just can not believe how many women have waited for so long, in so much pain and anguish and just told their issues are standard female problems, it’s frightening tbh.

I am so sorry you have also been gas lit like this for so long. My dd15 had a GP appointment last week because the private gynae (when I told hime about her period issues) advised me to go to her gp and get a referral. GP told us a lap isn’t a nice procedure and dd would be best to ‘just’ go on the mini pill. I’m still not sure what to do about this. She may not have endo but seeing that I have it, her auntie has it and I suspect my mum also had it, I will encourage her to push things as she gets older. Why does it have to be such a massive uphill struggle just to get a diagnosis and the appropriate treatment?

Did the lap help you? Were they able to excise the endo and do you now have a treatment plan?

It makes my blood boil when I hear of women's pain, humiliation and suffering being so routinely dismissed. We should not have to advocate so forcefully for ourselves and yet we do have to, as I've learned. Male surgeons are the worst for being dismissive and condescending when all you want is answers to reasonable questions.

If it takes a PALS complaint to get that gyno to treat the next woman in your circumstance with a little more curiosity and compassion, you'll have done her a great service. Pursue the complaint, it's the only way you'll get systematic change. I really hope you get some answers and some decent treatment 💐

I think you should keep going. It is unbelievable that in all that time they didn't think the pain might be due to endometriosis. Plus had they spotted it sooner, it could have been treated and long-term meds used to make sure it didn't return. It's not easy to treat, but that's no excuse not to do it at all, my endometriosis is completely at bay due to taking the pill (mini) endlessly so I essentially don't have periods, which is the front-line treatment any GP could come up with and it's worked for me (and HRT doesn't seem to suit me as it reintroduces estrogen and it all starts up again).

You poor thing. Unbelievable but sadly believable, please do continue with PALS, it's just such such bad practice, how can you sit in a gynae dep't for over 20 years and them not think of endo...

I had two lots of surgery for it, recovered fine and have been on the pill continuously since then (which I read about in the NICE guidelines and my GP was happy with it). I am very lucky compared with most, as I was in so much pain and had difficulty working prior to that, plus it was just horrible and that suffering isn't ok when there's treatment.

I have experienced much the same but I'm in Ireland and womens health care is appalling here. Eventually got diagnosed with adenomyosis and endoemtriosis after more than 10 years. I was told it couldn't be endometriosis because normally that disappears after childbirth. Then I was told it was IBS, depression and just not enough sleep. I had to request an ultrasound, they did internal ultraound and found complex cyst. Referred to gynae and they found adenomyosis. They don't do laparoscopy here like they do in the UK it seems. I had to make a complaint for them to do the laparoscopy. Its coming up in the Next 2 weeks laparoscopy and hysteroscopy.
Definitely go ahead with the complaint, it has to change and that's the only way how.

Keep going with your complaint. My symptoms tallied with many of yours, my endometriosis enquiries were met with a shrug and constant fobbing off. After 28 years I was finally diagnosed but it was too late to save my reproductive system and I had to have a total hysterectomy. If your complaint can save some other woman from that, please pursue it.

@Silverumbrella even despite, during the laparoscopy, the gynae having to cut numerous adhesions because, as I was told, ‘everything was stuck together’, he told me he’d seen ‘no active endometriosis’. He wasn’t an endometriosis specialist, but a general gynaecologist.

I (later) saw an endo specialist privately who took ONE glance at the photos they’d taken during my lap and instantly said ‘you’ve got a cyst and stage IV endo.’

What solved it for me was a (pretty gruelling) 6-month course of injections to put me into early menopause, with the aim of shrinking any endo deposits (the ones that, er, weren’t ’active’, presumably). Then I had a Mirena coil that stopped my periods totally.

Eventually I went through the menopause for good. So no more agony, thank god. But I still feel my pelvic organs are pretty stuck together and I still feel occasional discomfort and congestion. Nothing even remotely approaching the torment it was before, though.

I’m appalled by your case and so sorry, but depressingly I’m not surprised.

I too think you should continue with your complaint, both because it’s justified and your pain and upset should be acknowledged, and because hopefully it will stop other women suffering in the way you have.

I am so sorry to hear others are going through the same thing. Before I joined the support groups I had no idea so many woman have similar experiences.

Regardless of how wobbly I feel over it all I will definitely continue with my complaint.

It does make me wonder just how many women are fobbed off year after year. It is said 1 in 10 women have endometriosis but with so many GPs and even experienced gynaecologists overlooking their symptoms it makes me wonder how much higher this figure could be?

Haven’t read the whole thread, but no you don’t forget your complaint. If they cancel for May, email the chief executive, your MP and the CQC. That’s what I did when my hysterectomy was cancelled twice, suddenly I got the op I’d paid for through my taxes several times over

This.

You shouldn't think of it as about getting people into trouble it's about trying to prevent others suffering what you have.

Follow through with the complaint. They need to improve their care to women who are suffering. If you don’t complain no-one will do anything.

you were right to complain. Keep the complaint going at least until after your consultation in May. And tbh don't withdraw because they should be using these complaints to improve their processes.