I’m curious. They were talking on the radio about the average diagnosis time for ladies with endo. They said the average time was 8 years - shocking I know! Personally, my diagnosis took 5 years from when I started complaining about pain. I don’t have heavy periods so I think that may have been the reason endo wasn’t immediately discussed. How long did your diagnosis take?
Also, I’m starting a blog and I want to write a blog post on the issues surrounding prolonged diagnosis, would this be something you’d be interested in reading?
Thanks! Xxxx
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EllaB3
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It took me an active 20 months. But it was because I pushed hard. I got my laparoscopy within about 4/5 weeks of the specialist saying the MRI had come back fine.
It took me 7.5 years for mine! Repeatedly kept being told ‘I was just one of those women’ and ‘there’s nothing wrong with me’ finally get a referral and was diagnosed with endo and 2 blocked tubes via laparoscopy in March 2020 after 7.5 years
Wow! That is such a long time I’m so glad you got some help finally! I hate the stigma that surrounds women’s issues but by talking and educating we can help to break that! Thank you for sharing your diagnosis time and I hope your condition now is more manageable xxx
It really is so stigmatised isn’t it! I did have another laparoscopy on the 29th so 2 days ago, my consultant thinks he has managed to unblock one of my tubes, but this could’ve all been dealt with so much earlier, just recovering now. Obviously endo isn’t curable so I just wish there was more I could do so other women don’t have to go through what I’ve been through fighting to get someone to listen to me! Xx
Im undiagnosed GP suspected endo my symptoms started Sept 2020 just as my contraceptive implant was wearing off. After 12 yrs of hardly one period I had it removed and have had regular periods since however horrific pains in my left side bowle problems thought I had bowle cancer so bloods and stool sample were fine then and after monitoring the symptoms i realised they coinsoded with my cycle. Worse around ovulation and during period. Thats when I went bacl to GP in March and since then I had a pelvi ultrasound which showed nothing significant howeber gp refered my to gyne so waiting for that, and an upper abdo ultrasound which had now shown abnomrailty on liver.?????? I have no clue whats going on now waiting for a MRI scan and in the meantime my symptoms have become worse and more constant not just around my period. It scares me so much to wonder what the hell is going on inside and when will I ever get any answers as as you say average time for a diaognisis is 8 years!!!!!! I feel like I cant cope another month! Was so bad yday I rang 111 and they just told me to wait to see what my mri says and take co codomol!!!!!!!! 🙄
Hey! Thank you for sharing! The waiting is such a bad part of the whole process and I hope yours speeds up for you. Hopefully an mri scan will provide solid answers so you can get the ball rolling with treatment!! Thank you for replying to this you’ve been a great help xxx
It’s taken around 2 years for me. My pain started when I came off the pill and slowly got worse and worse. I started having investigations into my fertility in March 2020 which found suspected endometriosis on a scan. I’m getting my first lap within the next few weeks x
I was constantly visiting GPs from age 12 and only had a diagnosis at 40 yrs old. It makes me so angry to be fobbed off all those years whilst missing 3 days of school every month, college was a right off and many jobs affected too. It’s so unfair. I wish I knew then what I do now. Keep fighting and be strong x
I was diagnosed 'officially' last week after a laproscopy. I wasn't referred to a specialist until 2018. I'm 41 and have had problems since around the age of 14. Over the years been told growing pains, gall bladder, ibs, 'bad period' appendicitis, 'to be less anxious' trips to hospital, scans treatments (including Zoladex) constant meds and the list goes on. So even though taken 3 years for official diagnosis, I've gone through all the pain, for almost 30 years.
I'm so glad Endometriosis is being recognised now.
Thank you so much for sharing. I can’t imagine what it was like to go through all of that for so long. I’m glad you’re finally getting the help and support you need. I think you’ve hit the nail on the head there... regardless of how long official diagnosis take, you can be living with the symptoms for years before it is actually recognised! Xx
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