Deep infiltrating nodule?

[Lavenderpetal]

Hi everyone,

Last week I got rushed in to hospital with the worst episode of pain I've had in 6 months! The pain was unbearable. While in hospital I wasn't expecting much as everything always comes back ok! (Of course it does) but it should on my scan a what the general surgeon called a lesion! Now from these groups I've learnt that's a sign of endo so I was over the moon as I'm still undiagnosed and have my surgery next month! It gave me so much hope I will finally know what's going on. Well then my gyneacolist came around and told me everything was okay on my scans and nothing showed endo. Now on my discharge paper it days deep infiltrating nodule found! Is this a sign of endometriosis?

Thank you in advance xxx

[Lily1986]

I’m sorry you’ve had this experience but from personal experience I can tell you a deep infiltrating nodule is a sign of severe endometriosis!

What planet is that consultant on? Sorry, it makes me so angry as I’ve had it so many times being told it’s all normal, then seeing the actual scan reports later on to find it was anything but normal. If they don’t know enough about Endo they should admit it rather than gas light the patient.

Also, remembering that scans don’t show anywhere near the full extent of disease and are relied on far too heavily by medical professionals in my opinion.

For example for 15 years I was told everything was ok in scans etc until I couldn’t conceive and finally I was taken seriously and had first lap. I came round from the lap to be told my disease was so severe if there was a stage 5 that’s where I’d be and it was the worst case my consultant had seen. Now I’m awaiting surgery to have parts of my large intestines and possibly bladder removed.

I would ignore what the consultant said and wait to see your endometriosis specialist and have the laparoscopy.

Have they at least given you something to manage to pain whilst you wait?

Best wishes to you, please feel free to message me with any questions.

❤️

[Lavenderpetal in reply to Lily1986]

Hi Lily,Thank you so much for your response🥰

Omg I knew it deep down when the general surgeon told me cause of what I see on here but the gynea was so confident it was all clear.

I'm so sorry, you had to go through all of that! It's awful the care endo patients recieve. I really hope you are doing well and getting the care you deserve now🩷

I have my lap in 2 weeks! I am so excited I just want to know if I have endo or not (which I'm confident I do, especially with what you've told me)

And nope nothing for the pain just anti sickness tablets and some iron tablets! Ridiculous.

I do have a question if you don't mind me asking? They are pushing me to get the coil while I have my surgery and I do not want it! Did you get it or recommend it?

Thank you so much xxx

[Lily1986 in reply to Lavenderpetal]

Aw no worries, you’re very welcome.

Hopefully after your lap you will receive slightly better care 🤞🤞.

They also pushed me for the coil during my last excision, I said no 3 times but was coerced into having it. I tolerated it for 3 years but it ruined my skin and I put a lot of weight in. It then got dislodged so had to have anaesthetic to get it taken out. Even when it was removed it took a long time for my body to get back to ‘normal’ and an MRI done about 9 months after surgery confirmed disease had already returned so it hadn’t prevented that.

I know some people it does really help though and slows down the reoccurrence of disease, I think in milder cases.

Just out of interest did they comment on position of your uterus in the scan?

Good luck with your surgery and feel free to message me anytime, I’m more than happy to help ❤️