update!: Hi guys, I posted a few months... - Endometriosis UK

Endometriosis UK

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update!

BlackcurrentSquash profile image
12 Replies

Hi guys,

I posted a few months ago about my laparoscopic diagnostic surgery. They didn’t find endo however I was convinced that I had it regardless.

I took all of your advice on getting an opinion, and I am now seeing an endo specialist instead of a general gynaecologist and wow you can tell the difference!

Absolutely no disrespect to my previous gynaecologist but it was just clear she didn’t know exactly what she was looking for and therefore I got told I didn’t have it.

Well, long story short, I had a 2hour MRI scan and I have endo on my left ovary, a cyst in my fallopian tube, endo covering my ‘pouch of Douglas’ and superficial endo on my bowel which has lead to it becoming completely stuck on the one side (explaining the excruciating pain when I open my bowels!!)

Honestly sounds ridiculous but I have FINALLY been heard, I have finally been validated and my specialist said these exact words “Kelly, you are going to get your life back” these words will stick with me forever.

Now waiting for my next surgery!

I hope everyone is okay :)

Sorry for the ramble, had to let it all out, and here is the best place as you guys can understand.

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BlackcurrentSquash profile image
BlackcurrentSquash
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12 Replies
Rehafer profile image
Rehafer

Glad to hear that you have finally got some answers and you can move on with things. Wishing you well with surgery.

Out of interest did the endo in your bowel show up on your scans? I had MRI and ultrasound of abdomen pelvis, recently had laparoscopic surgery but say they cannot rule out bowel endo without more investigations. I was kinda hoping that as nothing showed up it wasn't there. But my endo has been very small but spread out and has never previously shown on MRIs but they've found and removed during laparoscopies.

BlackcurrentSquash profile image
BlackcurrentSquash in reply toRehafer

Hey, i hope you’re okay, thank you for your response :)

My bowel endo did show up on my scan, he said he could see that the endo had caused my bowel to stick together.

My bowel endo is superficial which means it is on the outside of my bowel, I’m not completely sure if it is different and if it shows up on scans if it is deep endo which is actually inside the bowel.

Sorry I couldn’t be more help x

megiiva profile image
megiiva

That's an amazing, it proof that we need to be our own advocate as it seems no-one understands better than us. Wishing you all to go smoothly and to be able to feel pain free again xx All the best

YellowDahlia profile image
YellowDahlia

Yey! Congratulations that's amazing.

EndoViking profile image
EndoViking

I'm so very happy for you. It's a strange situation to feel happy that you've got a diagnosis of endo but it is such a relief to be heard and finally know you were not crazy and that you can now get the treatment you shouldn't have had to fight for in the first place. And your specialist is right, you will get your life back!

Bubble-z profile image
Bubble-z

wow, well done for finally getting diagnosed! Are you going to get your surgery privately?

BlackcurrentSquash profile image
BlackcurrentSquash in reply toBubble-z

Thank you so much! Yeah, I’m very lucky because my dad gets private healthcare insurance with his job, and I am under his policy, so the new consultant I am seeing is privately x

DarkStar85 profile image
DarkStar85

Well done for persevering and getting a specialist. Are you booked in for excision surgery? Hope it all goes well.

LolaBear15 profile image
LolaBear15

I am so very proud of you, sweetheart. You were never in any doubt - even after you were told time and again that it wasn’t endometriosis, you still stood firm. You are an incredible, bright, brave, resilient and feisty young woman.

Whoever thought that a diagnosis of endometriosis would be cause for celebration?! Our family - that’s who, after all the pain we have seen you go through.

I’m just sorry that you had to fight so hard for so long.xx

Nish710 profile image
Nish710

Hello! So pleased that you’ve found the root cause of all that pain!! I’m in a situation where they have found a 3x3 cm cyst on my left ovary via a pelvic scan, and due to have another very soon so they can see how the cyst has changed. I’ve also been thinking if I should see a endometriosis specialist however I haven’t been diagnosed with that until I have the laparoscopy, so my question is, should I see my general gynaecologist and have the laparoscopy with them or go directly to an endometriosis specialist now? Also where did you go, happy to travel within the UK. Also hope you don’t me asking but is it expensive to go through to a specialist? Thank you in advance

Maggieeeeeeeeeeeeee profile image
Maggieeeeeeeeeeeeee

great. I am happy for you. I had the same experience with NHS …. I am availing to see dr Denis t in Harley street . I know he will help straightaway.

HT267 profile image
HT267

It must be such a relief for you to finally have answers. It shows you must trust your body over everything else. Best of luck with your next surgery xxx

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