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Endometriosis UK
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Negative lap follow up tomorrow.. what should I ask?

Hi, I'm a 19 year old female with the symptoms of; pain with intercourse, irregular periods, pelvic pain prior to bowel movements etc....

I was diagnosed with IBS when I was 13, however then when I was 17 I got diagnosed with GERD and Esophagitis, alongside a Milk and Gluten intolerance, and so the diagnosis of IBS was dismissed...

However, my pain prior to bowel movements has not subsided and so alongside my pain with sex and irregular periods my doctor reffered me to a gynae and I had a laparoscopy 3 weeks ago, unfortunately this came back negative for endometriosis which would have explained my symptoms.

So really i am a lost cause, and have my lap follow up appointment tomorrow and was wondering if anyone else had a similar experience or anything?

Also need suggestions of what to ask so i don't just get brushed under the carpet and dismissed

Thank you for reading x

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Hi,

I'm 20 and have very similar symptoms to you. I had a negative lap in march and had my follow up 2 weeks ago with a different gynae to who did my surgery. Reading my notes, she believed that my surgery did not check deep enough and that i may have bowel endo or endo behind my uterus (where my surgeon didnt check.)

I have been referred to pain management and am waiting for a letter to see them so i can ask for an mri and more pain killers. My next gynae appointment isnt until January so it's another waiting game.

Have you had an MRI or other scans? Xx

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I will get back to you following my appointment tomorrow on wether they checked behind my uterus or bowel for endo, I'm hoping he did as my key symptom is the pain with bowel movements.... i was shown the photos following surgery but was so out of it and quite upset that nothing was found i don't remember if they did.

Ive only had an ultrasound, but that doesn't show much, i think i'm going to have to push for an MRI, as I've had a colonoscopy and that was negative also

thank you for your reply, as much as its awful we're both suffering, its nice to know I'm not alone makes me feel less crazy xx

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Hi there,

When I was 19 I had a negative lap, and was fobbed. I was diagnosed at 22 (4 years ago) with endometriosis and adenomyosis. So yes, they can definitely miss it.

Please don’t give up, and keep fighting for a diagnosis.

Hope you get the answers you need x

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Hi

I had a lap last year and they didn’t find endometriosis but I had a tube of fluid which was drained. It was until my recent lap (two weeks ago) to remove that tube where Endo was found within that tube and on my other tube, it had gone from nothing to severe in 12 months.

I would ask what your treatment options would be for your pain moving forwards and what other things can be done in future to determine if Endo has grown (ie MRI scans or further surgery)

Hope the appointment goes well! X

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My daughter has been going through the same thing and she is 16 , I am telling her to see another gynaecologist because I am wondering if the one she went to missed something. Sometimes a second opinion is needed . I wish you luck

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Hi,

I had the same problem, and am aged 20. I completely understand your frustration. I’d say to double check whether they checked your bowel for endo, and if you’re not satisfied with the outcome of your gynae appointment, go back to your gp and ask to be referred to someone else. Make sure you at least start looking into pain management because then even if you don’t have a cause for your symptoms, you’ll at least start to be able to manage the symptoms and then hopefully not have your symptoms taking over your life! Good luck!

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So I just left the appointment... he showed me all the pictures and they did look comepltley clear.

So as I expected he dismissed me and just said keep a diary .... and that was it appointment over ????? I’m quite shocked to be honest, not even an offer to be referred to a gastroenterologist ...

I did ask and he said that’s the best thing to do from here

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They can't refer you to another department, you have to go back to your GP and get them to refer you. I'm surprised he didn't tell you that!

My GP suspected appendicitis so sent me off for emergency scans, they found cysts on my ovaries (one on each). So the appendix doctor told me to go back to the GP to get to gynaecology because he couldn't do the referral.

It's such a stupid system!

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Despite bleeding during intercourse and pain with intercourse he has happily said it’s not gynae related .. I’m quite upset to be honest

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Pain during intercourse was my first symptom, I kept getting told to take STD tests. When they came back all clear I was sent on my way with no idea what to do next other than 'try a different position'. Every time I complained I was sent off for more STD checks, I know it was down to my age but in the end I gave up. I thought maybe it was just normal for me.

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Hey, I’m the same age as you and have the same symptoms. My lap showed endo and a cyst but my gynae was an endo specialist.

Go back to your gp and ask to be referred to an endo specialist. Carry on making a pain diary and it will help you more xx

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