Finally, after 8 weeks, saw a gyno, no he... - Endometriosis UK

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Finally, after 8 weeks, saw a gyno, no help......

rosesinbloom profile image
7 Replies

Well, what a disaster of an appointment!

It wasn't the gyno's fault, oh no, my GP had not sent any of my details over.

So, eight weeks after finding out I had the endo cyst on my right ovary, I finally get there, obviously I've been a bit stressed about it, but then to find they hadn't bothered to send any details.

Worse still, all she had written was 'abnormal ultrasound', I was talking, presuming she had all of the information there.

She didn't know i had had a positive CA125, then she asked me what my number was, I didn't know, she didn't know I was then sent for an ultrasound, and there they found the cyst.

She then asked me how large it was, I had no idea, I was in the GP's room for two minutes, she said I had an endo cyst on my ovary and was referring me to a gyno, nothing else.

I'm just in shock that they could do this, who on earth doesn't provide the details of an ovarian cyst to the gynaecologist?

Thankfully, the nurse was the nicest person I think I've ever experienced in the NHS and she was sympathetic and found me an appointment for next Tuesday, they are going to request my records, but they've also asked me to go and ask for it to be printed out too.

I just cannot get over this. I think it's time to reconsider my future under their care.

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rosesinbloom profile image
rosesinbloom
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7 Replies
Gweeda profile image
Gweeda

I'd like to be able to say I'm surprised, but I'm not. I'm infuriated that the consultant didn't just go on their computer and look up your test results though? Sounds a bit like the consultant (or secretary) hadn't done their homework and read through their list beforehand. If they had, they could have requested the info beforehand. Your GP probably just assumed that is what they would do as I believe that's how all of my test results have been seen, whether by GP or consultant?

It's awful that you built yourself up to get there and had this as your experience. It should not be your responsibility to provide copies of your test results! And your GP may well ask you to pay for copies of them! It's impossible to say who is actually to blame for this as I found all that happens is consultant will blame GP, GP will blame consultant and you'll never know. Having to go through the whole building yourself up again, as well as all this stress on top, could well aggravate your symptoms.

It might be worth just giving the practise manager at your GP a call. Try not to sound as if you're blaming anyone and concentrate on what it's doing to you. I went down the 'I don't know what went wrong but this is the situation...........I have another apt and want to ensure its not the same, can you help?' route. They ensured that it didn't happen at the next apt and all of my tests were (amazingly) on the consultants screen (?!).

The only good thing out of all of this is that the nurse was understanding and got you another apt. Hope you get on well this time. Try and not stress x

rosesinbloom profile image
rosesinbloom in reply to Gweeda

Thanks for the reply.

Finally got through to my GP's office, thankfully the receptionist was really nice and helpful. She has printed off my referral for me to look at, and the report from the hospital for my scan and all my bloods results too.

She did say though, that the referral contains details about my endo cyst, so I have no idea why she didn't read it yesterday.

I'm so confused I could just cry. clearly it was there for her to read, I'll see that for myself, so what does that say about the specialist, if it was there but she didn't even read it?

I feel so overwhelmed just about now, my head is spinning with everything.

Added, I'm not worried about the CA125 now, as nothing sinister was found and I know that endo does cause it too. At least that's one thing I'm not too bothered about....

Gweeda profile image
Gweeda

Ps. With your positive ca125 test I do understand how urgent this must be to you. Endo can cause a raised level too so try and not panic x

MaloushkaPat profile image
MaloushkaPat

The same happened to me but the other way around! I was referred to a gyno a few months ago as the last GP I saw about my chronic pelvic pain mentionned endo to me and wanted a consultant opinion. Went there and the consultant barely asked me anything, she blamed my pelvic pain on the copper coil I had at the time and sent me to swap it with the mirena coil...which I did.

However it did not help, but as I am French, I have the luxury to be able to go see my family GP in France (who has been my GP for as long as I can remember and knows me and my family history very well) when I go visit my family. I went to see her and she asked me so many more questions than the consultant did, asked me about digestive problems that I could have around my periods, back and leg pain, etc and told me that with the symptoms I was describing she was 99% sure it was endo... she told me to go back to see a gyno if the pain did not settle down or get worse with the mirena coil (which did not and indeed got worse...). So I went back to my UK GP to get another gyno referral, however the GP could not believe that the consultant gyno did not give any potential diagnosis in their notes... I also received the notes in the post and some things were mentionned in the letter than never happened during the appointment or also false information was in the letter which I clarified with my GP (for instance I would have said that paracetamol helps me manage the pain, when it does nothing and told them that...)

So here I am being referred back to a consultant, I have an appointment next week and I'm hoping it will go better than last time. I just can't cope with the daily pain and the other symptoms anymore and just want a formal diagnosis and action plan!

Good luck to you anyway, I hope you get everything sorted soon! xx

rosesinbloom profile image
rosesinbloom

Thanks guys.

I picked up the pack yesterday, including the referral, in it it clearly states they found a cyst on the ovary and it's inductive of endometriosis, so that's the reason they referred on to gyne.

I have no idea why she said there was no reference, and I'm a little worried that she didn't take the time to read a small referral note. It doesn't exactly inspire me with huge amounts of confidence when I'm already petrified about it all.

Gweeda profile image
Gweeda

Hey, wondered how you got on with your second apt? I'm really hoping you saw a different consultant! Making false statements in a patients notes is something any medical practitioner can be struck off for!

Hope you asked her why she said what she did when the referral clearly stated why you were there. Would've loved to have seen her face - or heard her excuse!?

Anyway, hope it went a lot better than first time around xx

rosesinbloom profile image
rosesinbloom in reply to Gweeda

Hi Gweeda.

Haven't been on for a while, so just saw your post.

My second appointment went really well, I was worried as I thought she must be incompetent to not even see on the referral the fact I have an endo cyst and everything, but I had another doctor, a really good one who was also really nice. He's a top specialist, but not in endo, but he was so lovely, he said he would sort me out and knew an excellent doctor who he felt would be the best one for my conditions. He felt I would most likely need surgery and he wanted me to see an expert.

So, the next week (which I think is amazing how quickly I got the appointments) I was seeing an endometriosis specialist, who is the lead doctor at the BSGE too, which is my actual hospital, and he was just wonderful. He took everything about me into consideration, as I have a lot of other conditions which need to be thought about when looking at surgery. He was just so nice, as was his nurse too, both couldn't do more for me and treated me with so much understanding and kindness.

So, I will now see him in another six months, he said to his nurse it always has to be with him, no other doctor, so it's really good, he will be my sole doctor in all of this and surgeon if need be. I'm under the BSGE now, and have a wonderful specialist.

I have to have other tests for my other conditions to see if I have involvement which will make surgery too tricky. I also cannot go on any birth control for the time being, again because of other conditions.

So I'm in the same condition, but feel so much more relieved to know I have a good doctor and someone who more than knows what they are doing!

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