GP said my results are normal then said this? Advice for endometriosis

[Mummto1]

Hi everyone,
I am fairly new and was looking for some advice.
I had a c-section 2 years ago and from then I’m dealing with chronic abdominal pain, random bleeding, heavy clotting, I can no longer use tampons due to the pain, swelling to the point of looking heavily pregnant. The pain can be indescribable.
its effected a huge part of my life - gp has given pain medications, I have had 4 external scans referred to gyne - but never given any answer. I was told to take the pill which didn’t work and I was also told to join a baby group meet other women who may also have this problem.
this week I had my first internal scan and was told while in the scan there benign changes and scaring to my womb and he said it looks like adenomyosis and to ring my GP in a few days to discuss.
i called my surgery today to request details of my scan and the receptionist said yes they’re all normal. I then mentioned what I was told in the scan and she said oh yes that is documented that it looks like endometriosis and/or adenomysis. Following this I had to ask to speak with my GP which she signed and said ok I’ll try sort it out for a call in a week or so.
I just feel like I’m constantly being fobbed off and this is all in my head - like I’m going crazy. My pain is always there, I could barely move after my internal scan.
I am 25 with a very active little boy.
does anyone have any advice at all?
Thankyou for reading x

The GP should refer you to a gynaecologist as this is outside their remit. i would also have a word with their practice manager as you were given incorrect information initially re your scans.

What pain medications did the go prescribe?
were you prescribed tablets like tranexamic acid tablets previously?.

Write down any questions you want to ask in advance.

You write you were previously referred to gynae - what happened then?. Would also suggest you keep a daily pain and symptom diary in the meantime as this can also give a gynae clues. If you can take someone along with you for moral support to appointments so much the better.

You need a referral for gynaecology and push for a laparoscopy. My endometriosis didn’t show up on any scans and after years of being fobbed off I’ve just been diagnosed with severe endometriosis that has spread to the bowel and pelvic organs.

The receptionist is unlikely to be qualified to give you your results, fortunately you know they are not normal as the sonographer told you.

I am also not qualified but I do know this sounds like it requires a Gynae referral, please be clear with the gp how much this is affecting your quality of life. You could ask gp if there is a specialist endometriosis centre you could be referred to directly. If not the see a Gynaecologist who may investigate further, treat or refer to specialist.

There maybe something a gp can prescribe meanwhile I don’t know so do ask that also.

You might want to look up NICE guidelines too.

It doesn’t sound as if the receptionist is equipped to give these results - I wouldn’t necessarily take any of the info at face value for now. Can you see the results in the NHS app? I agree you’d do better to see a doctor.

Hi all,

Thankyou so much for your replies.
I have previously been under the gynaecology consultant - she prescribed me the pill without doing any investigation other than a physical exam. This did not work. N

i have had a phone call from my GP practice today who confirmed that the internal scan shows I have adenomyosis.
I have been offered the marina coil as a form of treatment.
I have not been offered a referral back to gynae.

my main issue is controlling my pain on my bad days. I already take tranexamic acid, codeine and paracetamol but sometimes this doesn’t touch the sides.

I have a 2 year old toddler, I am 25 and work part time as a nurse. I feel like I have finally been given answers to what’s wrong with me and it’s not in my head but with no solution to how I can improve my pain or quality of life