I’m completely new to the group, joined after my urology doctor referred me to gynaecology to have a laparoscopy to investigate endometriosis. Since then I have researched a lot and convinced I have endometriosis! Everything I have been through the last 3 years points to endo. (I didn’t know about the condition until recently) was feeling very positive about the appointment and finally felt I was going to get some answers but feel totally deflated. I was told I need to have my coil changed (currently have a copper coil) to a Marina? And then see me again in 6 months..I completely broke down as I cannot take another month of this daily pain and eventually she agreed to send me for an ultrasound to check for endo- I’m really confused as I thought it can only be detected through laparoscopy? Please help me! Did anyone get any answers through ultrasound? I’m so down about it as I have had so many ultrasounds/ct scans/cameras for bowel and bladder issues and everything is clear.
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Gingerlove195
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Hello 🌻my ultrasound showed nothing. Only MRI.I had Mirena twice but because my uterus tilted it fell out every time. And Mirena caused me a lot of pain because I have fibroids in uterus.
I was bleeding for 3 weeks after I started on Cerazette pills.
I had a huge relief from bowel pain after Prostap injections. (Consultant has prescribed me that and said your GP could do the same) .But had side effects for few months: joints pain and depression.
Now waiting for full hysterectomy with bowel resection.
I think they have the same treatment path for everyone. Unless you go private maybe. 💛
healthunlocked.com/endometr... a look at that conversation, no they can see nothing. And some professionals won't acknowledge the fact that some have stage 4 and nothing had showed up on scans! And if the MRI is not done by a specialist for endo, forget about it (it won't show up, that's the mistake that I've done).
it’s just so frustrating I feel like she dismissed everything I was explaining. I have suffered terribly this last 2 years and honestly believed that I was going to get somewhere this time but now I’m not so sure I left the hospital in tears. I’m sorry you are going through this too.
If you have an ultrasound with a sonographer who knows what they are doing it will show the endo so will an MRI. Any surgeon who is any good wouldn't do a lap without one because the scan show where it is , what it is wrapped around etc and means that the op will be much more successful. Some things like adneomysiosis can actually be missed easily on a lap and are seen better oon an MRI.
Th difficulty is how to know if the sonographer is any good? If you see a sonographer who has basic quals and little experience of endo the result will eb very different that if you seea sonographer who has high level skills/qualifications and knows about endo.
There is a very good specialist sonography specifically for gyane conditions in London you could try them privately. But if your endo is bad it will show up because your pelvic oragns will be pulled out of placeor stuck together. Having a lap witout a scan is not a great idea as laps often create internal scarring, I had my first without a scan and had tons of endo but the surgeon miseed most of it and left it in as he had no idea where it all was.
yOu need an MRI or a TV ultrasound with a specialist sonographer.
thank you so much for your reply this has made me feel so much better as I am new to all this and have maybe misread or misunderstood info I thought that an ultrasound would be a waste of time. Thank you I really appreciate it x
I know exactly how you feel I was told this. The mirena changed my life f that helps took it 18 months to finally start working but I'm starting to be able to love my old life in moderate pain that is manageable with just paracetamol and ibuprofen. Keep pushing for your self and explain to them how debilitating you life is.
My consultant totally dismissed me and was not interested in my symptoms but still put me forward for the operation.
I relaxed with this illness you need to convince people of how sick you are because I've noticed no one ever truly believes us except a few who are great support and advocate for us.
Do not take it personally I know it's hard not to but some people will never understand or be interested in our symptoms no matter what. Maybe ask to see a different consultant and see what happens from then. Try the coil as well if you want and if you can afford get a private mri/ultrasound from a trained clinician.
Do not let these nonchalant medical people ruin your mentally health or drain you because for everyone one person that takes your symptoms seriously there is 5 who don't believe you.
Advocate for yourself only you know your body and what's changed keep fighting - you've got this xx
thank you it honestly means a lot. That’s great news about the Mirena! Yesterday I was feeling very low but today I’ve decided I’m going to keep at this and not give in. The consultant told me that they would write to my GP and suggest the coil change but I know how long that takes from experience so I’ve called them myself this morning and made an appointment to do it- seems a small thing but I feel so much better taking some control. This group has been amazing already and I’m so glad I joined. Hopefully my ultrasound shows something and I can then get the MRI but if not I’m going to look into a private scan. Thank you 😊
I also like many of the ladies on her have been through this part of the process it's not worth it but keep on at them and in 6 months go back and state you want a diagnostic lap to look for endo, don't take no for a answer I found that after seeing multiple gynes you need to be heard as they don't listen just tell you to try this try that again and again there is only you that will stand up for you so be firm in telling them what you need, good luck for scan as some can spot it but don't feel downhearted keep going xx
Thank you for this post Gingerlove195 and to all of the ladies that have contributed, I am very sorry to learn about what you are going through, we can't take away your pain on this forum but we can support and guide you and give you the benefits of our experiences.
I am not sure if you have looked at the information and support that is available on our website:
thank you! I will take a look at the links. I have just received my appointment for an ultrasound it says ‘US pelvis’ then ‘US pelvis transvaginal’ does this mean I will have 2 scans? One internally? I’ve also worked out that I’m likely to be coming to the end of my period on the day does this affect the images at all? Thanks 😊
Hi! 😊 It means vaginal scan only. I had one before my surgery, it details the uterus and ovaries really well. It will also signal whether or not you need further investigations like MRI.
So it's possible that nothing will be found. Push for MRI on account of pain..which will probably show abnormalities. I did have surgery, it was to remove quite large endometriomas. Then I was formally diagnosed with endo. MRI didn't pick up the extent of my endometriosis but it did prove it existed, hopefully this is what happens for you. It's crap isn't it? ❤️.
tbf I had an MRI and they found nothing - but tbh I think they rushed it and were more concerned with looking at my back, whereas the woman who did my US seemed to know what she was about and found endo and adhesions. It does depend on who you get doing the exam, sadly. I mean it can still be missed but it’s far more likely to be found if the person looking knows what they’re looking for exactly.
I’m sorry you were recalled, I know it’s traumatic but at least they are continuing pursuing looking for answers which is a good thing
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another surgery just 6 months after my first!
Finally getting a laparoscopy, afraid I’ll go back to square one. 
My First Gynaecology Appointment - NHS
Endometriosis diagnosis 
Anyone any experience of Endo returning after having Mirena coil fitted and no period for 3 years? 
