So I’ve had my mri results and nothing showed up. The gynaecologist said we cannot rule our endometriosis because it doesn’t always show up but we can rule out the fact that it’s extensive, because then it would have shown up. He said there’s no correlation between the extent and the pain.
He spoke a lot about chronic pelvic pain and how the receptors get super sensitised and then can continue to feel pain even if the endo is removed. He’s always worried about the risk that a lap poses for nerve/organ damage so has suggested that we don’t do that. Instead he’s suggested going on the pill to try to alleviate the symptoms and a referral to the chronic pain physio department at the hospital.
Mixed emotions really- I don’t know where I am with it now and whether I have it or not. We also want to start trying for children. Feel so tearful!
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Kitty-102
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Do you know where it is? Have your AMH checked via your GP. ASAP it will determine the number of eggs you have. Exercise helps a lot apparently! Take serrapeptase it’s natural and stops excess water in your pelvis often happens with endo and turmeric is anti inflammatory. Again supposed help with endo. If you have low egg reserve get on IVF asap. You may have to go private. Get those eggs on ice.
I’m 35 and with suspected endo, it started off with a cyst on one ovary. Tbh I am still not sure if I have it. But my AMH has dropped severely. If your AMH is low don’t be upset about it as it’s not always an accurate thing with endo sufferers. Birth control will keep it at bay, but not stop it. Why hasn’t he said you go on Zoladex? It’s an injection to stop inflammation and prevent endo flare up.
I have just had an mri scan which didn't show up anything and I have got extensive endo- I have had many years of operations for numerous endometriomas, been diagnosed with adenomyosis and have it on my diaphragm and urethra. I had an ultrasound scan before the mri and it showed up the adeno and an endometrioma. I am asking for a second opinion from another radiographer because I think something must have been missed and perhaps they are not a specialist in looking for endo. If you are getting lots of endo symptoms, I would ask for another opinion from a different radiographer about your scan. Is your gynaecologist at a BSGE specialist centre for endometriosis? If not, I would suggest you ask to be referred to one. I don't want to worry you unnecessarily, there is a chance you might not have endo but it is worth exploring further with specialists if you are indeed getting the symptoms.
Thanks for getting back to me. I saw him privately and he does specialise in endo. He went through the mri report with me really carefully and was explaining that there’s no sign of an endo that they can see or of organs being stuck together etc which is positive. He said the mri will only show deep infiltrating so he’s certainly not ruling out endo but said it’s a good sign that not everything’s stuck together down there but did say that the pain is not always related to how physically bad it is.
He said the treatment is usually hormonal ie the pill and physio so let’s judt treat me as if I have got it, even though it’s not confirmed, rahther than putting me through the lap and the risks it has. I think his concern is that my brain will have already formed these pain connectors so even if they remove it there’s no guarantee the pain will go away and if they can tell that’s it sticking everything together and doing too much physical damage then why risk it? I can completely see his point and obviously I don’t want to have surgery unnecessarily. I guess I just wanted a hard diagnosis so I actually know one way or the other and ideally for it to be removed and then for everything to be ok but I guess it just doesn’t work like that
Hi Kitty-102, I can see why you wouldn't want to have a lap but I would monitor it and have a scan again at some point- you can always have a lap later on if need be. I have had four laps and each time it reduces the pain for about a year and then goes back to normal levels of pain. I have had a lap every couple of years for recurring endometriomas cysts- I think once you have these it's important to have a lap as they could burst and get so big that they start damaging surrounding organs as well as increasing the pain.
I had mri right before my last surgery and all it showed was a cyst. I had endo all over bowel, bladder, rectovaginal endo and it was basically thiughtout my whole pelvis and I had lots of adhesions.
I don’t think mri can give the picture needed on these things, like they say it only shows the DIE.
Hi, have the removed it and if so have your symptoms improved? I can see what my dr is saying but don’t know whether I should be pushing for a lap regardless or whether it would even benefit me even if they did find anything x
I only had the surgery a few weeks ago so the jury is out on total reduction in symptoms but yes it has helped massively. I had nerve pain which shot down my leg and daily pelvic pain which at times meant I couldn’t walk.
With regards to choice of to lap or not to lap, I guess the question is what outcome are you hoping for? If you want children then it’s no good having the pill or zoladex and they both just hide symptoms and prevent you from being able to get pregnant. If you have a lap you know 100% what you are dealing with and can move forward from there.
It’s a totally personal choice but for me, having tried everything else I would choose the lap every time.
Make sure if you do go the surgical route that it is with a BsGe endo specialist. X
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