I feel like nobody is trying to help me, ... - Endometriosis UK

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I feel like nobody is trying to help me, what can I do?

Redfan profile image
6 Replies

Hi all, I'm hoping someone can offer me some advice.

I was diagnosed last September after a laparoscopy, since then everything seems to have gotten worse. I had no follow up scheduled by the hospital and was just left to get on with it. The pain has been awful for months now and I am waiting for another appt with gynae after a scan also showed I have adenomyosis. This was in May and I was told I was marked as urgent so I should be seen within 6 weeks, my appt date came through and it was mid July which is closer to 9 weeks. The next day I get another letter saying it has been changed to 10th August which means it is nearly 3 months waiting. I am really struggling physically and emotionally and I really can't wait this long. The hospital booking line isn't open over the weekend so I have to deal with it tomorrow. Is there anything I can do to get them to move it forward? I've been looking at hospital complaints procedure as I feel I'm being completely ignored and fobbed off all the time. Any advice would be very much appreciated. Thank you xx

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Redfan
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6 Replies
JOSANDY40 profile image
JOSANDY40

Well a tough wake up!Sorry but this you are going to come to terms with. Work round and find a clinic that can help.

I remember crying and all the down times.

I have lived and except my life isn't what I planned.

I have managed to work around my illness. Serious it is!

You have to expect who you are and deal with it.

It's hard, very hard but if I can do it so can you!

I cried, I did the whole poor me but unfortunately you have to grit up. Your not alone. Research your illness. This website is good. I try to help people with my experiences, drugs and out comes. Unfortunately many doctors have little knowledge of these illnesses, some gyne specialists still are behind. Find a Specialist who is at the forefront! Any questions I will try to give any info I have experienced

Good Luck. ❤️

Pixie_Pumpin35 profile image
Pixie_Pumpin35

Hello Redfan,

You might be better off calling the consultants secretary not the booking line. If the number isn’t on the letter, call the main hospital and ask to be put through to the secretary. Can I ask, is you appointment at a BSGE hospital?

Pixie x💛x

Redfan profile image
Redfan in reply to Pixie_Pumpin35

Hi Pixie 👋Thanks for your help 💛 I did think that before actually, I'm sure I have her number because she rang me to say she had put me on the list, I might try that tomorrow, thank you. It isn't a BSGE hospital no, I do know there is one not too far from me that I could go to but I don't know how to go about that now? Xx

Pixie_Pumpin35 profile image
Pixie_Pumpin35 in reply to Redfan

Is this the same hospital that diagnosed you last September, and your symptoms have gotten worse? Did they do ablation surgery? If so, I would go back to my GP and ask to be re-referred to the BSGE hospital. Yes, you will have to wait longer but you will get better treatment in the long run.

Redfan profile image
Redfan in reply to Pixie_Pumpin35

Yes it's the same hospital. I had ablation but I had no follow ups after it and I am feeling like I don't know if I can trust that won't happen again here. I've been dealing with this for years (I'm 34 now) and I just want help with it all, it's affecting everything in my life. My doctor is generally supportive so I will speak to him as well. Thank you xx

Pixie_Pumpin35 profile image
Pixie_Pumpin35 in reply to Redfan

They don’t give you a follow up appointment very often after surgery, you’re discharged to your GP. What help are you looking for?

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