Can't find anything wrong - what can I ask?

[SufferingSilently9]

Every doctor I see thinks my symptoms are exactly that of endometriosis but nothing is ever found and I'm starting to lose it now...

Most recently got sent to hospital on Sunday by out of hours doctor due to pain but all blood tests and urinalysis were clear. Got sent home without any pain meds and told to come back for scans as they thought it may be cysts due to me having endo "ruled out" in 2018 by a laparoscopy.

Both ultrasounds came back normal and have to call my GP next week to see if he wants to refer me for anything but it's unlikely as my GP just thinks I'm a hypercondriac who enjoys burning my stomach with hot water bottles...

I'm hoping to get a virtual meeting with my gynaecologist soon and want some suggestions to ask regarding where to go next? This pain is really affecting me now as I can feel it's gotten worse or at least is increasing because I can feel it more over my gabapentin...

[Moon_maiden]

Hi

Sorry you are going through a lot at the moment, it gets very stressful.

Do you remember who did the lap, if it was a general gynae it could have been missed. Is it the same gynae you’re waiting to talk to?

If you can, ask for MRI rather than just having ultrasound. That is ok for ruling out things. Blood tend to be pointless for endo unless there is infection.

Have a look at info on the endo uk site re consultations with GP and gynae. It’ll be easier to have notes of symptoms, and if you can have someone with you and the conversation on speaker. Let the GP and or gynae know someone is with you. You’re less likely to get sensible answers and suggestions.

Let us know how you get on 🙂

[SufferingSilently9 in reply to Moon_maiden]

Hi, thank you for responding.

I no longer see the gynaecologist who did my surgery as he signed me off with nothing wrong - he is a specialist in "laparoscopies and menstrual disorders", I saw him privately initially and he thought I had endo straight away but then barely spoke to me after my surgery was negative other than to say he'll see me once I get pregnant (I could have screamed at him for that..)

My new gynae picked up my case but he isn't a specialist in it either and is just working on trying to rule other things out.

I have written a page about my symptoms and have all my medical notes that I requested so I have everything that was found and investigated so far as well as what I am going through.

I will ask about getting an MRI next (I'm fed up of constant ultrasounds anyways)

Thank you for the advice x

[Moon_maiden in reply to SufferingSilently9]

I’d had a phone call with the specialist and wasn’t happy afterwards so booked to see him privately face to face. Initially over the phone he said he’d do robotic laparoscopy for hysterectomy and any endo, this changed to open surgery as he said I’m too small for robotic surgery. I found that it was worth seeing him.

If you can get a face to face with a specialist you’ll get better answers, hopefully NHS.

[SufferingSilently9 in reply to Moon_maiden]

I've already had 2 face to face appointments cancelled with him after seeing him in person last year. Due to both this years being cancelled, they said it's either a video call or nothing until next year so I accepted video call.

[ourmolly]

I understand how you feel. I was diagnosed with endometriosis when I was in my 20's. I had a hysterectomy at: 28. However, I had rectal bleeding, which was like a period out of my bowel. Yet every time I had a colonoscopy nothing showed. After 35 years they said the lining of my bowel was very thin and that I had a rectal ulcer. Yet after 40 years I still feel my symptons are like endometriosis. I think you need to keep telling them your symptoms. Do not give up. regards, Della.