Mri results - what next?

[Kfaiza1999]

Hi, just had my MRI result from the community gynaecologist at St Mary's and unfortunately showed no sign of endometriosis, feeling a bit deflated as it's makes me think if the pain is just all in my head, the gynae said that it could be a bowel problem as I have pain when my bowel and bladder are full and now has put me on microgynon without a break😭I have tried this pill before and absolutely hated it, I have my gp appointment in December and wondering what I should do next? Should I ask my GP to refer me to an bowel endo specialist or get referred for a bowel related problem, I know that it does have something with endo I just have a feeling 😩

[Glondon1]

Hi. Have you had a laparoscopy? I've done some research and that seems to be the only test to rule out endo x

[Kfaiza1999 in reply to Glondon1]

Hi, I have not had a laparoscopy, the MRI was used to see if I have any adhesions or deep seated endo but nothing showed up so the community gynae is not that keen to do the op if she is not certain x

[Glondon1 in reply to Kfaiza1999]

Really try to push for one, your so young and this is already interfering so much with your studies and life. Reading the other replies, it's very likely you have endo as the symptoms all add up. x

[Kfaiza1999 in reply to Glondon1]

Thank you so much, hope my gp does refer me for a laproscopy x

[Mummy1982]

Hi

I had a Mri scan that came back completely normal. my problems still continued nd eventually I had a laparoscopy

The laparoscopy revealed endometriosis and adenomyosis.

The problem with endo is some people can have very extensive endo and no symptoms yet others with mild endo have chronic pain as well as many other symptoms.

The only real way to know if you have endometriosis is to have a laparoscopy.

It's very common to also have bowel issues with endo because of the proximity of where the 2 areas are

Try not feel deflated though I know hat it's easier said than done.

If you don't mind me asking what are your symptoms? xx

[Kfaiza1999 in reply to Mummy1982]

Hi, my symptoms have certainly become worse but I used to have severe pelvic pain a week before my period but now during my period is the only time I have a 'good' week, my period is very irregular and I have like a sharp pain when I put pressure on my pelvis (e.g passing urine and emptying bowels) I have have pain when my bladder and bowels are full and that is why my gynae thinks it may not be a gynae problem, I have really big blood clots and heavy period but my cycle is not that long( 3-4 days) I get sharp pain in my rectum area and mainly get the worst pain during ovulation and after my period has finished. This year I sat my GCSEs but I missed so much of school due to period pain and my teacher was very concerned as I have not been diagnosed yet so it's abit like you're missing so much school just cus of cramps? It is so hard to explain to other people especially doctors and they think it is not as severe as I think it is. Thanks for replying xx

[Mummy1982 in reply to Kfaiza1999]

It certainly sounds like you do have a lot of symptoms of endometriosis.

I now have chronic pain daily it used to be just the week before but I feel that it's mostly the adenomyosis causing that.

I also don't have a long period about 3-4 days of heavy clotty bleeding, so don't think that because it isn't long that it doesn't fit endo because it's different for each of us.

I wonder if you possibly could have endometriosis in the bowel from some of what you are describing?

No I completely understand it's very difficult for people to understand just how painful it is.

I would suggest that that you go back to your GP and ask for a laparoscopy because that's the only way you can definitely know and get some treatment.

I know it's scary I really didn't want one but I was pleased to finally know what was causing the pain and for people to know if wasn't imaging this pain.

I hope this helps xx

[Kfaiza1999 in reply to Mummy1982]

Thank you so much xx if I ask my gp for a laproscopy would I need to be referred to another gynae and go through the whole process again? And would they look at my MRI result so see if they should carrt out the lap? Thanks again xx

[Mummy1982 in reply to Kfaiza1999]

Yes you would a referalIdeally it would be best if you could be been seen at a endometriosis centre with a consultant on the bgse list who specialise in endometriosis.

They may look at your Mri but that should not be a reason for them not to offer you a laparoscopy because a specialist would tell you the only way to confirm the endometriosis would be via a laparoscopy.

bsge.org.uk/centre/

Here is a link to look to see if you have a endometriosis centre nearby to where you live, you can then take that information to the GP and ask them to refer you to them rather than just gynaecologist.

Xx

[DrWatson]

Push back about the pill if it doesn't agree with you. There are plenty of others you can try and you shouldn't feel you have to stick to one that makes you feel awful. I've been there and it is no fun.

[ElizaEliza]

Hi Kfaiza,

I’m so sorry you are going for this at your age too. You need to push for an lap, it's the only true way to know what is happening. Imaging is NOT an effective method of diagnosing endometriosis. I have had 4 laparoscopy to date (my last one was 6 days ago) and every single scan I have had before each surgery has not been effective at showing endometriosis.

My last MRI scan showed that my left ovary was in wrong place and that there was a small amount of endo on it but during my last lap, they found two large nodules of endo on my bladder, bowel adhesions, endometriosis on both ovaries, ligaments and my left ovary was stuck to my uterus. Trust your body and how you feel!

The problem with imaging is it can’t show the blood like deposits that endo is made up of and it can’t identity small bits of endo which can be incredibly painful. Did you have a scan with contrast dye?

What are your bladder and bowel symptoms?

[Kfaiza1999 in reply to ElizaEliza]

Thank you so much for reply, honestly means a lot to know that that are people who are suffering the same symptoms as me and makes me think all is not in my head, my bladder and bowel symptoms are only when they are full I get pelvic pain and sometimes shooting pain up my bum when passing wind or on the toilet, the mri test wasn’t done with any contrast dye but they put a liquid up my rear End to make it easier to see. I’ve currently been bleeding continuously for around 4 months and recently had a ultrasound which the report suggested my endometrial bit is thick enough for the cycle that i am at however my gp said how would they know what point of cycle you are at if you have been bleeding continuously, I’ve also had a stool test which should the inflammation was high so going to have a colonoscopy! Wish me luck! Sorry for the very long reply! Hope you are well xxx

[SweetSparrow]

Hey, so I have just had the same thing my mri was clear but my gynaecologist said that doesn’t mean I don’t have it and I am now on a waiting list for a laparoscopy as that is the only definitive way to find out 😊 hope this helps!