Diagnosed, anxious & waiting for gyno

[Midnightbloom]

Was diagnosed with Endometriosis after receiving results from Ultrasound Scan. Was informed I am showing signs of Negative Uterine Sliding sign. Something about my bowel not sitting right with others… I haven’t really been told much else other than surgery is most likely treatment.

I have had pains and symptoms of Endo for many years but have always been dismissed and when I began experiencing more pain and bowel issues I was told repeatedly it was IBS.

Bittersweet feeling to finally have a diagnosis & I’m very anxious whilst waiting for my meeting with Gynaecologist.

Could anyone tell me what to expect or anymore knowledge on this. Eager to hear others experiences 🫶🏻

[Plantbasedsoutherner]

I've had a similar experience. I had an MRI in Feb and still waiting for the results. This will hopefully show the extent of the endometriosis. And waiting for my gynaecology appointment to come through. Get my MRI results next week will give answers.Good luck with you referral

[Midnightbloom in reply to Plantbasedsoutherner]

It’s very unsettling to have wait so long for these things - I hope your diagnosis turns out ok and you get seen promptly! Getting an answer was reassuring to know I wasn’t going crazy. Good luck to you also lovely!

[Donnaysha]

I was in a similar position as you a couple of years ago. Everyone’s journey and endometriosis behaves differently.

my experience was that an experienced ultrasound scanner / MRI doctor can determine the extent of endometriosis and its impact on other organs without needing to do a laparoscopy just to determine the presence and location.

Had my lap last March as I had adhesions between my left ovary and fallopian tube and my lower intestine, which they separated. They also determined that I had a nodule between the back of my uterus and my rectum which has been causing me all the IBS/ GI symptoms. However, they decided not to remove this as it would need a colorectal surgeon and may cause long-term impact/ scar tissue

I did start taking progesterone after the surgery which is meant to help the growth and spread. I just had a one year postop check scan and unfortunately it hasn’t stopped it from growing or making my symptoms bothersome. But I think that’s down to individual body reactions etc.

My doctor has been open with me and said that we have to balance managing symptoms and surgery which could cause scar tissue (or further complications). The explanation I’ve been given is that if you want to go onto to have children then you want to avoid scar tissue buildup at this stage.

Unfortunately it’s not straightforward. However, I do know Someone who has had the endometriosis removed from the rectum with a colorectal surgeon and they are fine now.

All I can suggest is doing your research (you clearly are by being on this forum) and with a list of questions to the doctor to understand your options. Ask where your nodules / adhesions are and understand the options and risks/ benefits of each option.

Wish you the best of luck and know that you’re not alone!

[Midnightbloom]

Thank you so much for your reply! This means more to me than you know, thank you for sharing.

“my experience was that an experienced ultrasound scanner / MRI doctor can determine the extent of endometriosis and its impact on other organs without needing to do a laparoscopy just to determine the presence and location.”

This is was helpful to hear as I were under this impression also, but unfortunately I have had no real sense other than it is definitely Endometriosis and then they mentioned Negative Slide Uterine and something with my bowels…very little info was given and I’ve been told it’s a 19 week wait just to be seen for an outpatient referral

I’m sorry to hear that progesterone hasn’t help with the growth, have they suggest anything else? Your symptoms causing IBS is something I definitely relate to. Was the treatment to remove adhesions simple? Can you give any advice on what a Lap procedure is like? Xxx