I have an appointment letter!: Hey, I have... - Endometriosis UK

Endometriosis UK

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I have an appointment letter!

Bumblebee11 profile image
7 Replies

Hey,

I have posted a few times recently and I just wanted to update.

I have finally received an appointment letter! I mean.. 27th November, but still, its a date!

What really threw me is that it is for yet another ultrasound appointment. So I have just called them and they said the consultant wanted me to have another one before a clinic review appointment in December.

Here are my concerns: my last ultra sound was June 20th and essentially all of my left sides moved as one with no wiggling around (and my uterus/bowel too) and it hurt- my goodness did it hurt. I bled from it also and then had unmanageable symptoms that lasted almost 3 weeks.

What if all of a sudden that changes and then nothing is detectable.. I think because I have been fobbed off before the removal of my endo the first time round and a huge fight for the right treatment, I feel so unbelievably anxious.

Has anyone else had the "what if my doctor doesn't believe me?!" heavy feeling on their chest?

All the best to my fellow empaths,

Thankyou for being a Tippidy-tap of the keyboard away for when I'm feeling vulnerable!

Bumble x

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Bumblebee11 profile image
Bumblebee11
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7 Replies
Tangoandmax profile image
Tangoandmax

Hey, I’ve just had first lap. I went in worried sick I’d wake up to them saying there’s nothing wrong but it’s engrained after eight years of being told it’s in my head. My scans both indicated there was obvious adhesions but the constant gaslighting just means a lot of us are anxious of every appointment. (Well I was anyway)

Completely normal to feel this way under these circumstances I think.

Wishing you the best of luck xx

Frankatele299 profile image
Frankatele299 in reply to Tangoandmax

I had my first endometriosis surgery 4 years ago, I woke up with doctors saying there nothing wrong. However, on my second surgery I saw the endometriosis specialist, who looked at the pictures from my previous surgery and said endometriosis was there all along. Think sometimes general gynaecologist do the surgery and miss it .

Tangoandmax profile image
Tangoandmax in reply to Frankatele299

That’s literally my worst nightmare! My MRI thankfully indicated something my general hospital wouldn’t touch so I was moved on to the BSGE specialist. Still felt worried there would be nothing located though.

Lornalost89 profile image
Lornalost89

Hi. Totally get your worries. I think its normal when we have been fobbed off so much.

Take someone with you and just be strong, keep advocating for yourself. Remember a clear scan doesn't mean there isn't endo !!

Bagel96 profile image
Bagel96

I had my first lap just over 2 weeks ago and I was filled with anxiety the day of my surgery as I was convinced they would not find anything as they kept telling me it’s highly unlikely and trying to tell me all my symptoms were caused by other things such as IBS. My ultrasound was clear which made them right me off pretty much straight away. But my surgery got my diagnosis of endo! Just keep pushing for it!

ClaudiaGrace profile image
ClaudiaGrace

Hey, completely legitimate worry but also amazing to hear your consultant is so on it that they want an up to date scan to discuss ways forward. I know it’s tough but I’ve always found it helpful with this journey to try and focus on just that one step at a time and to write lists of questions or points I want to convey at significant appointments. So maybe focus on the scan for now if you can, and get any questions or concerns you might like to raise with them about your previous experience together. The internal ultrasound can be really horrible, unfortunately I think that’s partly due to lack of training as I recently paid for a specialist to do one and was really worried about the pain and it was almost completely painless. So it’s totally fair to share your concerns about that with them about that.

Really hope it’s a less painful one and that it helps you and the consultant to plan effectively.

Take care,

Claudia

Bumblebee11 profile image
Bumblebee11

Thank you, everyone. I'm sorry that you're all suffering too- really sorry, but st the same time so greatful you have offered support! X

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