Gynae phone appointment tomorrow - Endometriosis UK

Endometriosis UK
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Gynae phone appointment tomorrow

weekari
weekari

Hi,

I've just been called by the general gynae's secretary to arrange a phone appointment with the gynae tomorrow and I'm panicking.

I've had such a mess with the doctors over the last 4 years since I started getting so ill. My main issue is with debilitating chronic fatigue but I also have chronic back & hip pain and abdominal pain and gastro issues. I've seen gynae before and had a lap 2 years ago which was clear of endo & so I was discharged. I was later referred to orthopaedics due to the back pain. I had an mri which came back with showing severe endo throughout my pelvis. It was just the orthopaedics Dr that told me this & couldn't say much more than its severe and throughout my pelvis. I was referred back to gynae and last month I met with the gynae Dr who was the surgeon that did my original lap. I think he was a little defensive saying that any endo would be new as it wasn't there 2 years ago. He said the mri I had wasn't looking at tissue so they needed another more specific one to plan treatment. He was confusing me by saying 'possible endo' which I asked, is there a possibility I don't have it and he said no. But he still kept saying that. He wouldn't really tell me any specifics. He said the results from the second mri were needed and they would be discussed at the endo specialist clinic which was on 31st July.

So I've now got this phone appointment with the gynae tomorrow to discuss the mri results and the outcome of the meeting and my head is in a spin. I feel I'm going to get told they didn't find anything in the second mri and I don't actually have endo and this past few months has been all for nothing. And I will feel like a fool telling everyone this is what I have and feeling all justified for feeling ill when actually there's nothing wrong with me, I'm just making it all up.

I'm just having a really tough time of it today. My fatigue has been awful this week and my husband, who's my only real support has been awful...working really late and just not being very nice or helpful and getting really defensive and annoyed when I tell him this.

Ugh.

Sorry, I just need to share all this. It's a really tough day.

9 Replies
oldestnewest

Im so sorry to hear you are having a rough time of it.

This is a positive thing though and I think its important that you see it as that. You have fought hard for this and have been through a very tough time. I think its natural to be worried though but you aren't making it up so you are going to be alright.

I hope it all goes well. Just try to see this as a good thing. 😊 xxx

weekari
weekari
in reply to livvi_livvi

thank you. It's what I've been waiting for for so long- some actual information about what's been going on but I am now just panicking. I think it's because I've been let down so many times. I find it hard to believe someone is now going to tell me that they have a treatment plan for me. Fingers crossed it will be something positive!! xx

livvi_livvi
livvi_livvi
in reply to weekari

Yeahh I can understand that but I think you do have to stay positive otherwise you could drive yourself crazy with the what ifs.

Good luck xxx

HiddenThis reply has been deleted
weekari
weekari
in reply to Hidden

thank you- you're so right. I'm not usually this panicked. It's just been a long, long wait and there's also been a lot of other life stuff going on, as is always the way. I'm usually pretty zen but we all have our moments!!

Thank you for taking the time. I've managed to have it out with my husband too so that feels a bit better.

xx

I also thought that this post does not sound like your usual calm self! And don’t even talk to me about bloody husbands 😆 they just don’t get it on another level 😂 I think I would honestly feel the same as you in your situation-is your gyne an endo specialist? Mine was not originally and I had no faith in him, if he’d missed endo on a first lap I’d be even less happy about seeing him again! If you’re not happy with how things progress today, you need to ask to be referred to someone else. It is amazing the difference you feel when you have confidence. 😉

weekari
weekari
in reply to emmaquinny

I know, yesterday really had me throwing all my calm and accepting thoughts right out the window! 😂 We all have our breaking points.

This gynae is general, he specialises in cancer. I was told I've been referred to the specialist centre and they reviewed my scans etc. This phonecall is to tell me the results of all that. I'm just so worried they'll say I'm not being offered any treatment. I just feel a bit desperate. I want so much to have some relief from my fatigue. 🤞🏻

Only another hour and 16 minutes to go. 🙄

Thank you for taking the time to reply. X

Big hugs, I understand your fears. Try to remember this isn’t all in your head and you know your own body best. It frustrates me that all women doubt our pain and start thinking it’s in our head as we are so often dismissed. I was doing this constantly until mine was confirmed via lap, right up until then my gynecologist had been telling me it’s unlikely to be endo even though I was passing menstrual blood from my rectum and my gastroenterologist had ruled out everything else and said it’s endometriosis.

Keep us updated. Best of luck xxx

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