Drs appointment

[Kitkat2020]

Just had the most invalidating consultation with the Dr and feel very frustrated! Told him that whenever I’ve had a drink I feel bad pain and sciatica down my left leg and feel like I need a wee after like 10 minutes and he told me it’s impossible that the pain is from drinking because the drink goes to my stomach first, fair enough if that’s true but my pain does come on whithin 10 mins of drinking any fluid!! I shared my concerns that my endometrioma is getting bigger and he told me ‘not to worry about that, that it will grow and shrink’ (Wow amazing I’ve now stopped worrying) and that my discomfort will be to do with probable endometriosis and that they can’t do anything about that I just have to wait for surgery! So annoying as it takes a lot to build the confidence to call the Dr when worried about something and they just make you feel like you are being dramatic, so now I’ve been offered a urine test which was not my concern so I’m back to square one of just dealing with worsening bladder pain until I get a surgery date 😩😩😩 So scary when you feel something is wrong and they just fob you off!

[Smokey2020]

I’m sorry you had this to deal with. Totally agree that too often we are told to suck it up and just wait leaving us all heading towards breaking point. Constant daily pain is something new to me these last 12 months and it slowly eats away at you until you don’t recognize yourself anymore. I spoke to my gp again this week who didn’t even know about the endo specialist center in our local hospital even though I’m on their waiting list for a hysterectomy since October so will be on my notes. There is little hope when the people meant to help seem to struggle with knowing basics of the disease, treatment options or even reading your notes before having a conversation. I’m lucky that so far my bladder function is fine but my bowel is impacted. Are you with an endo specialist center? I’ve recently started engaging with the specialist nurse rather than GP in the hope she can help more. Perhaps you could see if that’s an option for you. Good luck as unfortunately it is something we all need when navigating through this. X

[Kitkat2020 in reply to Smokey2020]

Thanks so much for your reply! It’s so awful that they don’t bother to read our notes and say it’s ‘just’ down to ‘your gyne stuff’. I am just under my local woman’s hospital on the list for the laparoscopy and cyst removal, I didn’t even think to call them and see if I could speak to Dr who I saw before being put on the waiting list, I will try that Thankyou! I hope you get some relief soon, sorry that you are in constant pain, we are just expected to get on with it! I had never even heard about endometriosis this time last year, there needs to be a lot more education on it so people aren’t left to struggle!

Take care xx

[Smokey2020 in reply to Kitkat2020]

I’m not an expert at all but if they think you have endometriosis cysts then that usually indicates the need to be referred to a specialist BSGE center for treatment I believe. I’d double check with your doctor if you get to speak to them as you don’t want to have to go through two operations as if the first general gynae realizes they can’t complete what is needed as too complex for them they will then close you up and refer you onwards for another op. Perhaps see if you can get clarification on this to make sure you’re under the right team. Sucks that you even need to consider these things as really they should do this for us rather than us having to educate ourselves and ask the questions needed!

[Kitkat2020 in reply to Smokey2020]

Thanks for this! I’ve just googled and I think it actually is 😂 I’m under Liverpool woman’s hospital for the op, but I don’t think the Dr I saw was an endo specialist, I will look in to it! You’re right we shouldn’t have to do all the digging, it’s exhausting!! Xx

[Tuyet93]

I know the feeling being brushed off by doctors, when I was 14/15 I started to get symptoms I passed out in school due to the pain and ended up in hospital for a week, one of the doctors that treated me had enough of me being in hospital or something she turned round and had a go at me saying I was faking the pain and lying about my pains.Luckily another doctor scheduled me an emergency key hole surgery and the doctor found that I had an ovarian cyst.

I ended up being so depressed and scared of going to the doctors for years and only started to go and speaking to the doctors again in 2019 and I'm 27 now.

I would say try and get a third opinion as that could help to get seen to about endometriosis quicker.

I end up in A&E last week and even tho I ended up having to suggest to the doctor could I have endometriosis, so what he has gone and done was wrote to my doctor about it.

My nurse rang me up today and literally saying she is booking in to see a doctor tomorrow, then I will be starting a long process of whether I have endometriosis plus physio .

I really hope you will get taken seriously and get the help soon.

[Kitkat2020 in reply to Tuyet93]

So sorry to hear how you’ve been treated! It seems a theme to be constantly invalidated by people who aren’t living in our bodies! It’s understandable that you were left feeling depressed and scared. We know that something is wrong and yet the people who are supposed to help us tell us that there isn’t and so many stories of misdiagnosis doesn’t give me much hope.

I will try and contact the hospital and see if I can speak to someone who knows abit more about it! I really hope you get the help and answers you need! Sending you well wishes xx

[Tuyet93 in reply to Kitkat2020]

It is horrible when you put your health in the hands of the people whos job is to look after you and they fail you.With endometriosis I call it the silent but can be deadly condition, if you are lucky it shows up on the tests but if not it stays hidden for a long time.

I really hope one of these days more information about endometriosis is available so women can get taken seriously when it come to wanting to get a diagnosis.

xxx