Finally! But what now...?

[MaggieBluee]

Hi all 👋

I had an MRI scan last week and today got my results in a letter. The scan confirmed I have endo! I’m strangely pleased I finally have the answer! 😓 🙏

The letter from my gynae says I’ve got 7mm on my uterus and 8mm on my left ovary. My uterus is also attached to my rectum (sorry for tmi!!). He said that he doesn’t believe treating the endo would do any good to my fertility (which is my main concern, apart from the pain) and it may be detrimental.

So he is going to leave it and only offered a consultation end of October!

I thought only laparoscopy can confirm endo!

I don’t know how to feel now to be honest... 😔 On one hand I’m happy I finally have the answer but I’m so upset that they’re going to leave it!

Don’t know what to do now...😥

[weekari]

Hey

It's a rollercoaster of emotions isn't it?

Was this an endo specialist? I've had endo found through an mri but have been told not all endo is visible on mri and is just the deeper stuff that's seen. So potentially could you not have more endo that would be visible with a lap? I don't want to make it seem more complicated but just want to check this is being considered.

X

[MaggieBluee in reply to weekari]

Hi Weekari,

The scan and consultation wasn’t with an endo specialist. Just a normal hospital gynaecologist. So as far as he’s concerned, everything is closed and I won’t have anything else done.

So I think my only option is to go privately to an endo clinic and get a second opinion... 😓

[weekari in reply to MaggieBluee]

Well you could try and ask your GP to refer you to the endo specialist centre. Your consultant hasn't followed the NICE guidelines for endo as the mri really didn't give you a full picture--you could use that as a reason for referral. I think you could get more input if you wanted it. I don't know anything about the fertility side of things though.

Sorry bout I dont think that consultant has done good enough.

If you google NICE guidelines endometriosis you can see what you should be getting.

[MaggieBluee in reply to weekari]

Thank you, that’s really useful to know!! I didn’t think of the NICE guidelines at all! 😘

[weekari in reply to MaggieBluee]

No worries. I how you get some more clarity and support. X

[MaggieBluee in reply to weekari]

Thank you very much! I hope so too...!

Have a great weekend! 👋

[Collrobbo]

Hi

Do you mind me asking how old you are? With my experience I have found that having a baby helped my symptoms but I was really lucky to even get pregnant. I have been suffering for 27 years, had numerous treatments, and only recently got referred to a lady consultant who totally understands my problems, sent me for a mri scan to find it’s everywhere! I was told about 10 years ago that my uterus and bowel were attached but that consultant didn’t want to mess about with it as it’s too dangerous!! I am due to go in hospital in two weeks for a full hysterectomy! I can’t wait!! I’m 46 now and I have been told I am lucky to have my daughter who will be 21 in December. I understand exactly how you feel regarding the results but I would persist and if you are still not happy then asked to be referred to another consultant. Good luck 😊

[MaggieBluee in reply to Collrobbo]

Hi Collrobbo! 👋

I’m 30, we’ve been TTC for nearly 3 years and sadly I had a miscarriage last year at 10w. My endo symptoms got worse after pregnancy actually and I things started happening that I’ve never had before 😥 So I’ve started looking into endo more now, thinking that it could potentially be the reason for by fertility issues. That’s why I’m really upset that my gynae decided to leave it after MRI scan 😔

I’m glad everything will finally be sorted for you soon and hope the surgery goes well!! 🤞🤞🤞

[Collrobbo in reply to MaggieBluee]

Thank you, I hope you get sorted soon. Insist on another consultant if you are unhappy! I should have done. 😊

[Hidden]

I definitely think you should pursue this further with another consultant; if this was a general gynae how can that gynae be sure it isn’t affecting fertility? If this endo is causing you pain it shouldn’t be left. Honestly I find myself more and more baffled by how these so-called specialist think they can behave. I’m so angry on your behalf. Why these experts feel it is okay to fob us off I do not know; I had my endo consultant prepared to leave me me with unbelievable symptoms for 8 months and do nothing until my fertility doctor got involved. Don’t give up and keep fighting with you all the way xoxo

[MaggieBluee in reply to Hidden]

Thank you Jess, you’re always so helpful with your advice!

It also makes me angry that there’s no consistency in the way we are being treated and that we constantly have to fight for our rights! I was never seen by an endo specialist so don’t know how a general gyeano can make such a decision!

I’m definitely not going to leave it like that! Fertility is my biggest issue and I’ve been waiting for far too long!

All the best and hope you get your answers too! Xxx

[Hidden in reply to MaggieBluee]

Aww thank you.

Of course it is; I’d sell by saying you can’t cope with the pain they cannot ignore that 😏 and anyway the gynaecologist may not have seen all the endo on a MRI ; you need a lap to check to see if any was “ hiding” some isn’t always so obvious; I had literally a tiny amount but wrecked my fertility; when it was treated I fell but miscarried unfortunately mine returned but much worse.

This reminds me of the time my fertility doctor assistant told me that my endo couldn’t regrow that quickly; thank god my fertility doctor took concern after I wrote to him over symptoms and did all my referrals; low and behold it WAS back! My point is TRUST your gut feeling; you think it maybe it is affecting fertility you maybe right. I knew mine was back even tho medics were saying “ that is unlikely..” 🙄

my fertility doctor is the only specialist I can completely trust; he’s always got my back and thanks to him I’m now being referred to an colorectal specialist for my severe symptoms. Shocking what the endo consultant was happy to let me suffer; my GP has written to him because I think he needs to hear it so hopefully he won’t do it to another lady👍

Contact the hospital and say you can’t deal with the pain especially as you are ttc and can only take paracetamol for pain relief; tell them it’s not effective and impacting on your quality of life. They will act fast 👍 thing is you will worry that it may have have been missed on MRI; if it was that easy to diagnose endo laparoscopys wouldn’t be offered for a “ proper” diagnosis if endometriosis.

Good luck you can do this 😊 xoxo

[MaggieBluee in reply to Hidden]

Sounds like you had a very long and bumpy road to get through!! It’s so important to have someone that we can trust so I’m sure you’re pleased to have your fertility doc!

I won’t be referred to a fertility clinic for a while because we’d have to been ttc for min 2 years (it’s been 2,5 now!) BUT I had a miscarriage end of last years so the 2 year wait starts AGAIN! Ehhhh.... I’ve decided that I don’t want to wait for NHS anymore and will do everything I can to pay for a private doc to speed things up and to finally be heard.

Anyway, hope you have a lovely week ahead! Xxx