Fibrotic Endometriosis

[Ethel-Cloud]

I have had an absolute joke of an endo journey. To cut a long story short - after years of scans, a coil for 'treatment', pain etc... I finally had a lap 1.5 yrs ago and was told i didn't have it - I had an mri a few months after the lap. The consultant wouldn't show me the report, even though I asked to see it - so I got a copy from FOI. It said he I have fibrotic endometriosis & my uterus and bladder are in contact with one another - amongst other things.

Does anyone know anything about fibrotic endo and what stage this is?

Thanks.

[me94]

Sorry you've had such a bad journey. Following as my mri showed fibrotic adhesion but no active endo. So unsure if the fibrotic adhesion is related to endo. Did yours show a fibrotic adhesion?

[Ethel-Cloud in reply to me94]

Thanks for replying - Yes it mentioned a few adhesions and tethering - which I don't know what that means. Also, ovarian cysts - no endometrioma (which I did have a few years ago) and peritoneal pockets extending to the left and right. I don't think there is active endo because I had a mirena coil fitted 5 years ago - this has potentially stopped it? Again no-one has given me any solid info. The consultant just said 'no you don't have it' and didn't mention anything from the report. I only know all this because I got a copy for myself. I was then referred to a lovely consultant in pain management - who went through the report with me. I have been referred to another consultant for a second opinion - but I haven't heard anything yet. I have so many questions.

[me94 in reply to Ethel-Cloud]

Did the fibrotic bit mention a fibrotic adhesion or mentions fibrotic endo? Tethering means that things are stuck to something. Oh that is so bad that your consultant didn't say what your mri report said. I think after a while the coil can become ineffective and prob needs replacing as its been 5 years. You should defo speak to pals about your situation. Glad you have got a second opinion. Hopefully they don't keep you waiting too long x

[Ethel-Cloud in reply to me94]

Hiya, I got the report out - I wont mention all the details, but it says: 'there is impression of fibrotic endometriosis and further adhesion in the posterior pelvis' and also 'USL thickening with suspicion of sigmoid tethering' There is also mention of 'fluid in the POD and this fluid outlines an adhesion from the retrocervical area.' It also says my uterus is stuck down and then mentions it is in contact with my bladder. I'm waiting for an appointment for to change my coil - which I am dreading, as it's a painful process - fingers crossed it'll be ok. I think I might try and get in touch with the pain management consultant too - to see if he can move things on. x

[me94 in reply to Ethel-Cloud]

Wow that's a very detailed mri report. Thickening of the USL normally means it's caused by endo (i have read this before when researching about mri results and endo). Adhesions are caused from inflammation either by previous surgery or from endo. From that report it defo sounds like endo. Glad you're getting the coil changed and hope it manages the symptoms for you. Yeah defo try that too. Fingers crossed they can push things forward for you x

[Ethel-Cloud in reply to me94]

Thanks so much for all the advice and info. It's awful how my situation and the situations of so many other people are handled. It's a lonely journey isn't it... I had to walk away from it all for a while, as it's caused so much turmoil. I'll get back on the case. Thanks again. x

[me94 in reply to Ethel-Cloud]

yeah it is awful how anyone gets pushed aside with this condition It is very lonely. I dont know anyone with endo so it makes it harder. I also just had my appointment with endo specliast and he said to ignore my scans that shows adhesion as my mri showed that sigmiod colon is attached to uterus right side and my left oary is attached to uterus the had an ultrasound scn done a month ago and that showed that ovaries are connected to uterus. It sounded like he doesnt believe that I have adhesions as during surgery last Nov the gynae said no adhesions but I have endo nodule on ligament and superficial in pouch of dogulas. I've read it up on so many research articles that endo can cause adhesions etc. I went to a+ e a few weeks ago (i never go to a+e) but i went as had new pain on the lower left when my pain is nomrally lower right and a+e doctor looked at the mri scan and he said its cause the sigmiod is attached to uterus on the right side so everything pulling and causing pain. At least he didnt dismissive things whereas felt like this endo specialist was saying it not that bad

[Ethel-Cloud in reply to me94]

Hi, yes same here - I've often felt like I'm going mad and round n round in circles. Do you have problems / pain in your legs at all? I have sciatic type symptoms now and again. How can the endo specialist tell you to ignore the scans!?! I don't understand how the scans show them the problem, and yet they seem to be seeing something entirely different... What are they doing to help, what is next for you? Will you have surgery or medication to help with the pain?

[me94 in reply to Ethel-Cloud]

Yeah me too. Its a constant battle. I know ow it's bad for him to say that as endo can cause adhesions etc so surly that should also be taken into consideration. He has put me on the list for excision surgery. But I've never met this consultant before and during the appointment he hardly said anything about the endo and didn't really aks me for my symptoms. I don't feel that informed after that appointment. Its bad as now I won't see him again until the surgery. Hoping he was just having a bad day x

[Ethel-Cloud in reply to me94]

It is un nerving though isn't it? I had been under this particular consultant for a few years, and only met them on the day of the surgery! Then you have to just put your trust in them after barely speaking to them - it is absolute madness. I had eye surgery years ago, and I had constant face to face appointments with my doc to go through everything etc - why is isn't like that for endo surgery is beyond me. Anyway fingers crossed for you, I hope the surgery goes as planned. Ask questions - take a list. That is something I wish I had with me when I went in for the surgery. Hope all goes well and keep me posted if you can. x

[me94 in reply to Ethel-Cloud]

Yeah defo is. Its not right that we don't get to see there apart from the day if surgery. That is what happened on my last surgery. Now this endo specialist never seen him before apart from last week and he didn't give me any explanation and now I won't see him until the day of surgery which is not good. Exactly that we have to trust them that they have read all our notes before the surgery. Thank you. Hope your appointment goes better than mine. Keep me posted too x

[Avourneen]

The consultant has no right to hide your scan results form you like this. I don't know for sure but I don't think it is legal to refuse to show you. Fibrotic leisons are usual when endo is pretty bad and if your uterus and bladder are adhered that is also a sign of advanced endo too. I think you need to see a different doctor and get a second opinion.

I would also be concerned as to why your consultant sought to hide your results from you, this is the opposite of what should be done and would suggest that he/she feels they have something to hide.

Look up a good specialist endo gynae and go and get a second opinion, also put in a written complaint to PALS an d the GMC about how this doctor has treated you.

[Ethel-Cloud in reply to Avourneen]

Hi thanks so much for getting back to me. My thoughts exactly. She was very defensive and dismissive when I had the follow up. The lap surgery and how things were handled afterwards have made me uncomfortable and suspicious - it still weighs on my mind. I also found out from another doctor that she'd actually had my mri results for 3 months before she got in touch. I just thought it was taking a while as multiple docs were looking at the scan results. Surely another member of the medical staff can see she has done wrong. PALS got involved after the surgery and they prompted a second opinion. But sadly it's all gone very quiet, probably to do with the waiting lists. I was referred to pain management after the consultant told me I didn't have endo. Thankfully were so kind and listened to me. They said told they would try to hurry things up a bit. I have so many unanswered questions.