frustrated and tired

[hollie676]

Hi everyone,

i’m really struggling at the moment. feel like getting my diagnosis is taking forever, 1 step forward 5 steps back kinda deal. i was discharged from my hospital in 2018 after being told to basically get on with things and since then the pain is just getting worse and worse. i don’t know what else to do or say to get a doctor to listen to me. i spoke to my gp last year about this and he basically explained to me what a period was as if i didn’t already know and said my degree would help me understand. he referred me for an ultrasound which is next week but i’ve already had one when i was 16 (i’m 20 now) so not sure why i’m having another one because they’re either gunna find the same things or worse? i just feel so helpless at the moment. i’m in pain most of the time, i’m bloated most of the time and just general feeling of depression. i’m not sure what else to do to get someone’s attention at a hospital/gp surgery for them to see that i’m not okay

sorry for the super long rant i just can’t seem to speak to anyone else who knows me.

[Fitzy3121]

Hi. I'm so sorry it's such a difficult journey. I agree it seems frustrating to have repeated scans and they are unlikely to show on a ultrasound but it will rule out anything else. I lost count of ultrasounds. I think it's important to go back saying you want a referral to a specialist in accordance with the NICE guidance for endometriosis. There is information on endometriosis UK that you can use to help you advocate for yourself

[Vixen725]

I'm sorry that you are feeling frustrated. For years I didn't know about my endometriosis. I was told that everyone's periods hurt them. It wasn't until I was hospitalized for pneumonia in both of my lungs did they discover the endo growing in my right lung cavity. Every month I was bleeding in my lung and it caused the pneumonia. I've had three surgeries and now I'm working on my IVF journey after 10 years of not knowing what was going on and listening to the doctors instead of listening to myself. Please find doctors who will listen to you. This will require you to do research online so that you can find a specialist. There is a test that you can do that will tell you if you have high BCL6 levels which can indicate endometriosis. I came across it yesterday but it is a little expensive at $690 but it's cheaper than having three surgeries! receptivadx.com/ I hope this helps you find the answers you are looking for

[Redmum2]

Hi. I am so sorry to hear your struggle. My daughter who was 16 last week has had very similar experiences . She has had 3 ultrasounds, 4 a and e trips, x 2 days in paeds assessment and 2 admissions to paeds ward. She hasn’t been suffering as long as you but we have had similar battles. She is in constant pain and has been in bed most of the time since November. We changed our GP and have paid for private consultation and now have a private laparoscopy booked 8 May. It has been exhausting but I have called, emailed , chased, and argued to get where we are. I am a nurse myself and am off sick with the stress and anxiety from it all. It does feel like 1 step forward and 4 back. Covid has massively impacted on services where we live with staff redeployed else where and gynae theatres being used for other priorities, which I understand but shouldn’t mean others massively suffer. I have found this forum v helpful and the endometriosis uk support line. We have found a private gynae who is also NHS who has been amazing. Getting the NICE a guidance and using this has helped, it is exhausting though.My advice would be stay positive, be kind to yourself and keep going - hopefully you will find someone you can trust and who will help - good luck with it all!