I was diagnosed in 2021 with stage 1 Endo by general gynae. My symptoms recurred shortly after and an endometrioma was seen on ultrasound by general sonographer. This has since been identified by a gynae (not specialist) and ivf clinic consistently over around 2 years. Last scan was Nov 2023 and was still seen but just had lap by specialist and was told my endo is still stage 1 (uterosacral ligament) and no endometriomas found. I just can’t make sense of this and am really struggling to accept this, especially given what feels like very specific ovary pain. My AMH is low, and I had poor response to ovary stimulation. I feel like this doesn’t make sense with stage 1 endo and no endometrioma. I’m concerned about the impact this will have on my pain management & staying with specialist team. Just looking for any similar experiences or suggestions?
Endometriomas? : I was diagnosed in 202... - Endometriosis UK
Endometriomas?
Excuse me?
Hey so questions for your clinic realli would be could you go on a higher dose for your stims? Or were u on the highest? So are they still seeing the endemetroma?
My clinic was only concerned it It was guna be in the way on egg collection as they don't like to pierce them? So I had mine drained before hand but they obvs will refill over time.
Thank you! I’ve messaged them to ask when they’ll see me again to look at doing another round. It’ll be interesting to see what they see and suggest. I had only 4 eggs frozen, but when I asked if they would change my protocol they suggested they wouldn’t. There are different doctors within the clinic so wondering about having a discussion with a different one to get their take. My left ovary was high and fixed too but this has since been freed.
Yea defo maybe you can see a consultant that has Endo back round. Yea defo worth a conversation 4 is a good number thou so that's a good 
I’m so sorry you’re going through this circus that is our health service, it’s beyond cruel and leaves us suffering with very little (if any) care from those who are paid to do so.
From my knowledge (I have severe stage 4) endometriomas tend to only be present with severe forms of the disease.
Also from my experience of multiple poor scans telling me all was ‘normal’ for 15 years, I do no trust them. These rubbish scans actually ruined my body and life.
Even now scans never pick up anything close to the full extent of disease which is seen during laparoscopy. This with a diagnosis of endo which has obliterated my insides, put me in menopause at 37 and so much damage I will never have children, multiple organ dysfunctions and pain 24/7 forever.
I’d recommend doing a subject access request from the hospital and requesting your surgery photos, videos and reports then get a second opinion.
It’s rubbish that we have to resort to this but if you were able to afford £200 for a private consultation with a BSGE registered Endo specialist. It’s well worth it. I’d take with you all notes and reports. They can then do further testing and surgery on their NHS clinic. It kind of fast tracks everything. Also you get their undivided attention for 30-60 mins.
Best wishes to you please message me anytime. ❤️
I’m so sorry you’ve had such an awful time and thank you so much for taking the time to reply. It is really validating to know it is not just me who feels completely worn out and confused by the system. It is really helpful to know that you can access bsge in this way! I have a nurse led review in 10 weeks so plan to take my previous ultrasounds and ask for the teams opinion on them. I am hoping they can confirm either way that what I had previously been told was an endometrioma wasnt, or what the Endometrioma must have burst/shrunk and therefore wasn’t seen in lap. I feel it’s so important to try and have an idea of what’s going on inside of me! The grading isn’t necessarily important to me outside of being able to access the support/services I need and/or make choices about my fertility etc.
post hysterectomy endo 
Has anyone else gone private after being totally frustrated with the NHS and how do I go about it to try and get a diagnosis for my 27yr old
Endometriosis diagnosis 
2 opinions 
Diagnosed after 6 years
