When will we ever be taken seriously 😢

[Joely21]

So I seen a new gynae today went through my history explained everything, she was then trying to say it didn’t sound endo related, she then carried out examinations and then internal examinations which I cried due to the pain and have had severe bleeding since, after the examinations we then chatted some more and she didn’t believe I had endo, I told her the exact date of my lap and she looked it up and goes ‘oh these photos show endo! So what do you want me to do another lap’ I asked if she would consider it to which she agreed but basically said ‘we won’t find anything because this isn’t gynae related’ she then proceeded to tell me the risks of surgery as I’ve had a hernia repair so slightly greater risks but was like ‘well you might wake up with a stoma just because you want a laparoscopy’ I am honestly so broken right now and so frightened what to do for the best, sorry for the long message I’ve spent the last 4 hours sobbing not knowing what to do

[Tangoandmax]

Im honestly dumbfounded this is still happening. They’re inexperienced and lacking in any bedside manner.

I’d complain about the attitude honestly. Straight to PALS. I was pushed to the point where the waiting, the lack of basic listening, empathy or just any interest at all during appointments was last straw. They will not learn or change if they don’t understand what they are doing wrong, it’s our job to correct them. It still astounds me when they say well what do you want? Are you not the qualified medical professional, who is supposed to investigate and treat illnesses?

Pop it all on an email/in writing to PALS. It will likely be passed to the head of Gyne who should address directly with the individual or to the wider team if they prefer an indirect approach. Make sure you request confirmation the feedback has been disclosed and hope to see improvement moving forward. Completely within your rights to share feedback, whether that be positive or negative!

Not sure if you’re at a local hospital gyne or specialist? If not, could be worth looking into being referred to either their endo specialist or a BSGE centre where they actually know what they’re doing x

[Joely21 in reply to Tangoandmax]

Thank you for replying, I spent 5 hours crying last night feeling so unheard so upset and now frightened of what is the best thing to do next, I’m currently at a local hospital I’m trying to look into other options but do I have to be referred to these or can I contact them myself x

[Tangoandmax in reply to Joely21]

It is so upsetting. I’ve lost count of appointments where I’ve come out feeling completely defeated/bewildered and lost. If the local hospital is anything like mine was, it’s not worth staying somewhere where they treat you this way simply because they aren’t educated enough/ can’t even muster a basic level of care/interest during appointments.

Channel all those feelings into anger and fight for yourself. It was such a huge turning point for me and was only then where I started to see any progress in getting a diagnosis/treatment. You literally have to manage them.

You need to be referred to a BSGE specialist from them im not sure what the criteria is for them but if you have a previous endo diagnosis you have a chance. I think your GP may also be able to do this but I’m not certain on that. I would include that request in a PALS complaint, they should just action right away as then there’s one less person for them to deal with (ridiculous).

Stay strong, keep fighting. They’ll continue with the shitty attitude and lazy approach as long as you let them. Don’t let them xx

[Sunset-lady]

I'm confused. Did you already know you had endo from your previous lap? Why did she do an internal? What did she think she'd find? Are you wanting the endo excised in another operation or are you after a clear diagnosis? They are always worried about hernia operations causing complications later. This sounds awful and very frustrating x

[Joely21 in reply to Sunset-lady]

Yes I was told in 2015 my first lap that I had endo thankfully I knew the date as she said initially she couldn’t find any evidence, they wanted to feel for my pelvis or something honestly at this point I didn’t know as I was so upset & felt so disheartened, she said because of my hernia scar I’m slightly higher risk which is understandable but then she said about waking up with the stoma & even mentioned intensive care, I’m honestly so frightened about what to do x

[Sunset-lady in reply to Joely21]

I've been told many times that if I push for a bowel resection I could end up with a stoma bag for life. It's a very real outcome when you have stage 4 endometriosis and your bowel is stuck to everything, but it's not an outcome for a lap to excise endo unless they know it's all over your bowels or infiltrated your bowels. She shouldn't be using her position to scare you this way. Get a second opinion x

[Rainbow2468]

I have to ssy she sounds like a right 🐄, but it would be an insult to 🐄. They can be so insensitive i saw two horrible ones myself, they just didn't listen at all. Put a complaint invyo pals. Sending you a big hug x ❤️🤗

[Joely21 in reply to Rainbow2468]

Thank you honestly I just have no words, I’ve just cried ever since as I don’t know what to do anymore x

[Salamander88]

I'm so sorry you've had this experience and are understandably reallt upset from it, and I'm also really angry that this kind of thing is so prevalent. I had a similar experience of being dismissed even after my surgery which had confirmed it, he basically insisted that it couldn't be coming back, like you without even taking a proper history, but I asked to see a different Dr in the team after that and since then have felt much more believed/listened to.

I agree with the comments above about complaining and insisting on being referred to a BSGE centre. And just because you've had a hernia repair doesn't mean you should be expected to live in severe pain - of course there are risks from surgery but you need to be given them in a clear and balanced way so you can weigh them against the potential benefits, whereas it sounds like this person is a) not an endo specialist but maybe just a general gynae dr (?), which in my experience can make a huge difference to their actual endo knowledge, and b) focused just on the risks in a really not balanced way to try and scare you off it. My experience is that excision surgery in a specialist centre/by someone who really knows what they're doing can make such a difference, even though it's not a cure. So I'd try and ignore this woman and insist on seeing someone more specialist if you can.

Wishing you a lot of strength to keep fighting for what you need and sending you a hug x

[LME5]

Every response has been on point. It's so unprofessional and negligent of the doctor to conduct themselves in such a way. Do consider reporting them. I wish I had been more active with reporting the awful gynaes and endo specialists that I've encountered in my time as an endo patient.

When a doctor shows you that you have no reason to trust them to undertake your care, as this one has done, it's time to move on.

As advised, it's wise to go back to your GP and ask to be referred to a BSGE accredited endo centre. That's a good starting point. Note, not all "accredited" centres are good. They also employ doctors like the one you encountered.

You have an endo diagnosis so getting the referral shouldn't be an issue. Manage your expectations when it comes to gynaecological care. Chances are you will come across similar attitudes to the one exprienced. Trust your gut and only go along with a doctor who you makes you feel seen, safe and heard.