Endometriosis UK
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Endo specialist appointment

As I mentioned in a previous post, I have been referred (urgently) to an endo specialist în January, as I had a lap in October and the symptoms came back, more intense this time. Everytime I saw my gp with more complaints about pain, new pains, stomach pains, fatigue getting worse, losing my job because I haven't been able to keep my symptoms under control and, for the past 3 months, becoming bed ridden (my brother + friend care for me: they cook, clean, help with medication, accompany whenever I have any appointments etc), the gp asked if I saw the specialist, I would say no, and it's been x months and it was an urgent referral, and the gp would say that it usually takes a while....

Thank to your advice on the previous post, I called to hospital to see what is happening, how hey can allow so much time to pass, when surely they must know about the visits to A&E, the 10 different treatments tried and failed etc. I was left speechless when the lady told me that my appointment has been changed from urgent to routine...... I said I don't understand, I lost my job, I'm in awful pain every second, there must be a misunderstanding... Nope. I asked who could take such a decision and why, as it doesn't make sense.... All I've been told was to contact my gp, as she, the gyneo Secretary cannot do anything.

This is absurde! It's absolutely idiotic! I don't understand how it happened! How can that happen?! Why was I not noticed?! I am absolutely revolted, as if the appointment wouldn't have been changed, I would have probably still be working now, I wouldn't have had to apply for esa and pip and I wouldn't have gone through the nightmare that the past 6 months have been. I feel like there has to be someone who has to pay for this! Someone took this decision and messed up with my health!

I'm sorry for the rant, but the things that we have to endure because of this completely flawed system is unbearable. I'm sure there are better ways to keep patients informed.

3 Replies

Even as a routine refferal you should be seen within 18 weeks, and it's gone past that now, ring Pals at your hospital and ask them to look into it for you,

That is awful that no one thought to tell you about the change in referral, i would also send a email to ask consultant why it changed from urgent to routine,

Good luck xxx


Thank you for your advice. The Secretary said that, because it's been changed into a routine appointment, I have to wait 22 weeks. She told me to expect a letter by the end of July.

I called my surgery to see what exactly happened. The receptionist took my details and said a doctor will call me on the day (on the Friday). I find it very unprofessional that I haven't received any call.

I'm still trying to figure out how to contact PALS, as I live in Wales and, apparently, everything NHS related is a bit different. I did, however find an email address where I can send a complaint. I will keep trying to get through to PALS tho and also make an appointment to see a doctor on Monday, maybe they can shed more light on this matter. I will try and not bite there head off while I'm at it.


To leave so many of us suffering with unbearable pain for long lengths of time is inhumane. If it were a bigger known disease that was taken seriously then we would be treated better. My personal experience is unfortunately very similar and Im sure there are a high number of others in the same situation. Its just plain wrong.

Ive just been taken off the list for surgery as I didnt take the call from a nurse to do my pre op over the phone. I explained it was because I was sobbing my eyes out in bed in a world of pain and that when I realised Id missed the call (who can think straight in that state) I had tried to call back but was met with a voice message saying "you were called by the NHS, dont worry if its important they will call you back". Nonsense, I was just removed from the list. I have immense pain every day + can now barely walk most dys. Ive been so low enduring all this pain and with this as well im not sure how much more I can take


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