Why aren't people listening to me!?

[OceanHeart]

I’m currently at an early stage of diagnosis and am struggling to have my symptoms and pain taken seriously.

I’ve had multiple TV ultrasound scans, which have shown cysts that come and go, but the pain I experience is incredibly intense. During my most recent scan, the pain was excruciating—worse than childbirth contractions. While the cyst previously identified had resolved, the sonographer mentioned that my symptoms could indicate endometriosis and recommended further testing.

Unfortunately, my GP seems to be dismissing my concerns, and I feel completely unheard. I need guidance on how to get the necessary tests and treatment because this pain is severely affecting my quality of life.

The GP told me that the pain is in my head and I'm making it up - But its really not!!

How can I make people take my situation seriously and ensure I receive the care I need?

[RedCat24]

Hi. I was in a very similar situation but it took 14year until my symptoms became very much life effecting, I was on the phone to the GP everyday at the begining for 10working days straight and no one would listen, I ended up going to AnE from this and was admitted for 6days, then It was possible endo then not then it was, did a laparoscopy and was told negative (I was also in medical menopause at this time) then I was discharged (18month later) because I refused coil. I went back to my GP in absolute tears I'd lost my job due to ill health and wanted to be seen by a specialist they agreed and refered but the wait was over a year in the meantime I went private. It's a hard road to advocate for yourself but don't give up

[velowatching]

I've been there and it sucks, I'm sorry. I ended up completely changing GP surgery because the culture at the surgery was very "well, it's not killing you so we're not going to do anything." Is it possible for you to see someone else?

I ended up going to A&E multiple times which helped convince my GP I was serious. It also might be worth taking someone with you to help advocate for yourself? I've taken both my parents to various appointments just so they could be like "she can't function, take her seriously" (and to push back when I got super upset and couldn't handle things myself).

I hope you can get someone to listen to you soon <3

[JulesUK]

I’d report that doctor and find a new one. It’s so frustrating that we are still being ignored. There’s been petitions to the government, awareness campaigns etc and still nothing seems to have changed from when I was first fighting against this type of thing. Sadly you need to make a fuss to be taken seriously. It’s completely wrong but true. Change doctors and demand the support you are entitled to.

[Lilac_10]

I’m so sorry to hear of your experience! I had conversations with GPs where I was told my symptoms are normal - I ended up challenging her about this during the appointment. The conversation did go back and forth and become a bit awkward where we both said the same thing multiple times and then she agreed to refer me for ‘peace of mind’. I think it was a case of who was going to back down first. Through this referral I was diagnosed with extensive endometriosis. I would recommend challenging them during the appointment and if needed, take someone with you to support you with this. You could look at the NICE guidelines for endometriosis to support what you’re asking for and could also take a pain/symptom diary with you to back up what you’re saying. I have had experience with another GP where despite me challenging her, she would not change her mind and was adamant it was my lifestyle, so it’s definitely also worth trying a different doctor if you don’t get anywhere.

On reflection, if I could go back in time to when I was struggling to be heard, knowing what I know now, I would have been more direct with my GP and would have directly asked for my referral. I think I thought they would offer one, but often their words were ‘well what do you want me to do’.

Good luck and I know it’s incredibly difficult and disheartening but don’t give up. You know your body best x

[asread]

Hi

As others have said, what the doctor has said that it is in your head is not ok - you need to ask to speak to another doctor. Perhaps have a look on the website and choose the main doctor or if anyone has a related specialism. Also make sure it is a doctor and not an associate physician.

You need to tell the doctor you want a referral to your local Gyne - or find an endo specialist hospital closet to you and ask to be referred there. Under NHS you have a right to select where and who you want to be seen by.

It does also make a different who does your ultrasound and who interprets the scans as people with specialisms know what to look for the scans.

You may want to think about paying for a private scan and appointment as it will be quicker and you can see a specialist for the ultrasound linked to Gyne things.