Feeling defleated

[Ruralquirks]

Hi everyone,

So I've had an ultrasound scan, I've had an internal vaginal scan, I've had an MRI, and nothing has shown for MRI.

It's taken the Pelvic Pain clinic over 2 months to write me 4 sentences saying "I now have your scan results and reassuringly it shows no evidence of endometriosis" ....

I know that the only definitive way to diagnose endometriosis is through a laproscopy. Even the other nurse mentioned this to me. I've written all my symptoms down ready for my appointment next Friday, but I feel that I am wasting everyone's time and maybe this is all in my head? That letter really p**sed me off to say the least!

Just wondering, am I doing everything right? I've got a page of symptoms and everything I've had symptoms wise with my periods, mid cycle, and I'm really hoping to push for the surgery.

Any advice welcomed xx

[TennisAM]

Hey, I totally understand your frustration and anger.

As the nurse said scans aren't totally reliable so don't worry. It's not in your head. If the MRI is accurate (sometimes it's not) that means you don't have deep endo (5mm or more in depth).

Either way many do not have deep endo but have awful symptoms. The surgery decision should be based on symptoms.

It's definitely not all in your head, you have a list of symptoms and they're real.

Always remember the doctor isn't in charge - you are! This is your health and wellbeing and we have to be the CEO of our own health. Sometimes that means driving and pushing our own care. So as you have symptoms (and if the treatments aren't working) then back yourself, insist on a lap. This should help with symptoms. If you have signs of endo on the bowel or bladder etc make sure they will check these areas thoroughly. If it's general gynae sometimes they only check the areas of the gynae organs xx

[Ruralquirks in reply to TennisAM]

Thank you for your reply. I do definitely have a lot of bowel and bladder symptoms, particularly on my period.

You're right, we do need to be advocates for our own health and wellbeing, because reading all of the symptoms I've written down, it just isn't normal to be in that pain.

I will definitely push for the surgery xx

[CatherineEndo Moderator Moderator Endometriosis UK]

Hi, yes you sound like you are doing the right things. It can take time to get a diagnosis, ruling out other conditions first, as invasive surgery is generally a last resort. So it is good that you have been able to have these other scans first, even if it does feel frustrating.

If you are not happy with your next doctor's appointment remember that you can ask for another opinion from another doctor.

You may find the pain and symptom diary helpful, found here: endometriosis-uk.org/visiti...

This way you can see if your symptoms are cyclic alongside your periods or you might get some ideas of what you forgot to include in your list.

I hope this helps, and good luck x

[Ruralquirks in reply to CatherineEndo]

Thank you so much for your reply and your advice. I will definitely have a look at the pain and symptom diary also. Xx

[Tillyfloss]

Hi. Hope you are doing ok today. Endometriosis doesn’t always show up on scans, I had ultra sounds, ct and mri scans which all appeared normal, I had a chocolate cyst so it was really done to aid them removing it safely as it was attached awkwardly. None these scans even slightly showed the level of endometriosis, full frozen pelvis and general disaster that was my pelvic cavity, the very experienced endometriosis surgeon was baffled he showed me the scans against a normal one and he said even knowing what was going on it just wasn’t showing on the images. I did have to really push to get help and came across a lot of people implying it was all in my head and I must have a really low pain threshold but I knew something was really wrong and glad I kept pushing for something to get done. A list is a great idea, I also tried to describe the pain so the pain in my hips felt like something was being screwed into very slowly. What pain medication are you on? As certain things irritate bowel endometriosis more than help it. Xx

[Ruralquirks in reply to Tillyfloss]

Thank you for your reply.

I've been prescribed menofanic acid, and I take the usual paracetamol as well. I'm also on the Yasmin combined pill.

I do get a lot of bowel symptoms particularly on my period.

I'm so sorry to hear what you have gone through, that sounds awful and I hope you are doing okay.

Xx

[Tillyfloss in reply to Ruralquirks]

i was similar with bowel problems I was terrible leading up to and during period. Has anyone mentioned the endo diet to you? Doesn’t help everyone but really helped me. I’m good thanks, after my surgery I had prostap for 6 months and we decided to try ivf even though the chances were very slim - that slim chance is a very busy toddler and so far I’m not suffering much with the endometriosis. Good luck getting sorted. Cx

[Ruralquirks in reply to Tillyfloss]

Yes I am the exact same, as if the periods themselves aren't bad enough! 🤣

Ooo no? I might have a look at that actually, might be worth a try.

Oh lovely 🥰 I'm glad to hear that, thank you xx