Feeling unsupported by hospital and GP after endo diagnosis

[Myfanwy21]

Hi all, I am relatively new here but thought I'd post to see if anyone else has been in a similar situation to myself and how they might have resolved it as I'm really struggling.

I am 21 and have been going to my GP for extremely painful periods since I was 14, and about 4 years ago I began experiencing all the other symptoms of endo... constant pelvic pain, painful intercourse, fatigue, depression, painful toilet trips etc etc. After a few years of battling to be taken seriously I had a diagnostic laparoscopy in March this year during which endo was found and supposedly removed.

When I came round from surgery, I had popped to the toilet on the ward when the surgeon came to speak to me and she assumed I had left hospital (?!) so I left hospital later that night with zero idea what had happened/if they found anything/if I had been treated/how long recovery would therefore take etc. It took 5 more weeks before I could have any information, which was simply a call from the GP saying they had removed multiple spots of endo. But that was it. No follow up, no questions, nothing.

I still have no idea where the endo was or how severe it was. My periods are still excruciating and I have just random chronic pelvic pain at least once a day every day. The last time I went to see my GP about it she literally said to me "I don't know why you're here there's nothing wrong". Which is obviously not true.

I don't know where else to turn as even though I have been diagnosed and supposedly treated, I am still not being taken seriously. The original consultant I was supposed to be under is an endo specialist, but my operation came around because they had a cancellation and I couldn't justify saying no after having waited for so long, so the surgeon I had on the day was a general gynaecologist. I don't really have anyone to talk to as my mum passed away when 10 years ago so I'm just feeling really alone and struggling with the physical and emotional pain.

Any help or advice would be so much appreciated x

[tmc182]

Sorry you're having such a tough time, getting a diagnosis and treatment for endo can take years of battling with doctors unfortunately. Not right, but just the way it is.

I would suggest going back to your GP, perhaps seeing a different GP, or even changing surgeries where you may find a more sympathetic GP.

Are you still under gynae at your hospital or have you been officially discharged? if you haven't been discharged you can probably call the consultants secretary and ask to be seen.

You know your own body, so don't give up. Keep a diary of symptoms, amounts of medication you are taking, days off work etc to show the doctors. I always find any doctor I see is more open to me actually having an issue if I take my partner along to the appointment. He always comes with to consultant appointments now as I have never been fobbed off with him there. So perhaps partner, parent/grandparent, sister, aunt, supporting friend anyone who can nod and input from their perspective how this is effecting your life. Again it's not right a doctor should listen to you as an individual, but if it helps!

Good luck.

[Fabbird]

Hi, your GP should have had a letter from the surgeon which you are entitled to see. These days you should really be copied into all such correspondence. That would give you the details of the surgery.

If your GP isn't helpful then you can formally apply for access to your notes, either at the GP or the hospital. Just look up the hospital/surgery online and there should be information on the website about how to apply. There's a standard NHS process.

Then at least you would have the information you need about the last lot of treatment. Sounds like you may need to then push for another specialist referral. Good luck!