How frustrating!

[Peoni]

Hi everyone,

I have tried to type what I want to say so many times but I haven't got the right words to describe how I'm feeling.

I'm so sorry that we are all in this situation, if its stage 1 or stage 4, it doesnt matter, we are still suffering, stages mean nothing but endometriosis does!

I cant get my words out properly right now other than I am a little upset at the length of time we all have to wait for surgery, in my view the NHS is great, I feel lucky to have the NHS but WOW 1 specialist consultant for the northeast with a 52 week waiting list!!

That poor consultant, the amount of stress they will be under, patients like you and me suffering!

Sorry everyone I'm just upset and angry right now, im in agony, can barely walk upright because of the pain, pain killers dont seem to work, I just cant understand why there isn't more specialists 🙁

I am at stage 4.

[PaoPetite]

Sorry to hear you are feeling so frustrated! I think we all have been there ... I know what you mean about the waiting list... it’s ridiculous only for a simple scan the average waiting list is 2 months!!! How absurd... I also have stage 4 endometriosis and has been a painful and emotional rollercoaster! After 6 years of suffering and too many operations I decided to move to Germany for a treatment, because I’m the end after 2 years of waiting for another operation I found out that endo affect your fertility, No the doctors didn’t have the diligence to inform me properly about the condition nor did I receive a treatment or a follow up appointment after the first time of the laparoscopy this was back in 2015, I had to find out about all the condition investigating online and form that moment there was always the long waiting list just for an ultrasound and once you have toe ultrasound done you have to wait another 2 to 3 weeks to see the gynaecologist to explain what was found on the ultrasound taken by a nurse!!! It’s just insane!!! I hope I make myself understood ... it’s so frustrating anyway now 5 years down the line I couldn’t keep my hopes on the NHS and now within two months of seeing the first doctor here in Germany I already have gone under IVF treatment something that should have been mentioned the very first moment I got diagnosed!!! “Just in case mrs you might be infertile” think about ivf treatment if you wish to have a child! That should have been the information that I was meant to have! But I didn’t 😢 and if you have children already like me the NHS doesn’t pay for it ( although my husband doesn’t have any children) discriminatory in my opinion .... anyway long story short the system here in Germany has worked for me although it wasn’t free under the insurance policy we paid only half of the treatment, but I was seen by all the specialists that I needed to see in a matter of two months!! By the way the gynaecologist here in Germany take the ultrasound right there and tells you exactly what’s happening inside you .... nothing like in London where I never had the pleasure to see a gynaecologist with a proper ultrasound machine .... yes the NHS ideology it’s amazing but realistically doesn’t work like it suppose to, again only my opinion and past experiences, by the way people keep saying the health care it’s free ( yeah to certain extend) but we tax payers pay toward the NHS too so technically it’s not free... anyway sorry for my rant I also get very frustrated and sometimes I don’t even make sense of my sentences anymore.

Lots of love 💛

[JulesUK]

I completed a survey recently for endometriosis that is being used to help push our cause to government. I’m sure it must have been published here somewhere I saw it on Twitter. If you’ve not see. It I’ll find it and post it. Hopefully some action will be taken at long last it’s so frustrating how we get messed around and treated.

[Peoni]

Thankyou so much for your replys, I'm so exhausted at the moment, I will come back with a bigger message soon.

Thankyou both xx