Awaiting endo investigations, getting no-where

For the last 6 months now my endo symptoms and health have been deteriorating. After my admission early this year, I was told it's likely I have endometriosis and to take the pill for 6 months back to back.

Since then, my symptoms have continuing to worsen and I feel like I am getting no-where. I don't know what to do for the best.

My GP over 4 weeks ago was concerned about my ongoing symptoms and referred me to gynaecology urgently. I called after 2 weeks to see if any news on appt and hospital had no referral whatsoever. I was so upset and frustrated. Another referral has now been faxed over last week but cannot be given a timescale of the further wait.

I have contacted the hospital again yesterday to be told folder is in the office waiting for triage and to call back today. I have been telephoning all day, number continues to ring and voice mail box full so unable to leave a message!

I am struggling to get a GP appointment even though I'm not sure what else they can do. If I have an acute episode of a symptom or if having a 'bad' day, by the time I get to see anyone such as at walk in centre I get told to make appt with GP as ongoing issues. I don't really want to go to A&E to be told similar.

Any advice would be greatly appreciated, thank you xx

5 Replies

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  • Hi there. I'm so sorry to hear of your situation. It's so frustrating and upsetting when you're in so much pain isn't it? This might be worth a try as a similar situation happened with me

  • someone else advised me to do so and it really sped things up for me. Contact your hospitals PALS team by email with an unofficial complaint. Not an official one as this will slow things down.

  • I did something similar with another issue I had. I contacted PALS to see if there was anything I could to speed things up rather than making an official complaint. They were very helpful and got it sorted. In my case the consultant should have referred me to another specialist and hadn't (this wasn't for endo). PALS got in touch with him to do the referral right away.

    I think you're best writing to PALS and explaining that somewhere between you GP and the hospital your original referral got lost. Stress that your symptoms are getting worse and that you may end up in A&E. Then ask if there is any way the triage could be speeded up as you've already had a delay. It would also be worth pointing out that the whole point of triage is to see who needs rapid treatment and who doesn't so there should only ever be a minimum delay in doing the triage.

  • They will contact you normally within a couple hours to discuss. I was in tears in pain. Do try this too as you'll find it really gets the message across.

    Good luck and let me know how it goes x

  • Firstly find out what the waiting list is likely to be. You need to know how long for the initial consultation and then how long for surgery if you need it. In this area it takes about 4 months to see any consultant for an initial consultation. I had a 15 week wait for my surgery and for that I had to go outside my area as it isn't done here.

    In my case I paid to see the consultant privately, it cost £200, then I got put on the NHS list for surgery. I saw the consultant within about a week. So if you can afford that, it is well worth it.

    Check the BSGE.org/centre for the list of specialists. Many normals gynaes are very poor with endo. Phone your local ones on the list that are NHS and ask their secretary if they have a private clinic as well.

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