So confused :( Is it endometriosis or not?

[Bellefire]

Hi. I finally had my scan to see whether or not I may have endometriosis. I had both an ultrasound and a transvaginal scan too. The person who did the scan said everything looked fine. i'm so disheartened. He has referred me back to my doctor to see what he wants to do next (if anything). I'm sat here with the most excruciating pains down there (it feels like someone is twisting my insides), so I'm guessing my period won't be too long now. I've been looking at possible symptoms, and I have nearly all of them. If it isn't endometriosis, then what could it be? Is there another test that I could ask the doctor to do? Thanks in advance.

[katymarie]

Hi! I was in the same boat as you about 4 months ago! Constant pain especially on my period etc.

I firstly went to my GP and she thought it could be a kidney infection of some sort because I was getting dull constant back pain on my left hand side. But all the tests came back clear. She then sent me off for a ultra sound and again she couldn't see anything on the scan!

I was so angry and upset because I was in this pain and getting no where. Again after the us I went back to my GP and mentioned I was still in pain and she suggested I wrote a diary of what pain and other symptoms I had and when.

I was then referred to a gyna, who has no booked me in for a diagnostic lap on the 20th! So don't give up! Keep pushing for the answers, don't leave it!

I hope it all goes well xx

[Tboag]

Endo dosnt often show up on a ultra sound scan, it's possible to show on a MRI, but that's only if it's exstensive,

The only true way of getting a diagnosis is to ask your GP for a referral to a specialist gyne endo doc, on the BSGE list, they can then do a laporscopy to look inside for endometriosis,

Look up a lady on here called Lindle, her posts will point you in the right direction,

Good luck

Xxx

[missm87]

Hi, I'm currently in the same situation as yourself. I went for my pelvic scan before Christmas and they said everything was fine with my womb however they noticed on my scan that my bowel was very gassy, I do have IBS but the dr insisted I have a blood test to see if I'm gluten intolerant. I've told her all my symptoms and that I've been living with IBS for 10 years now and I know it's related to my womb but drs dont seem to listen.

You just have to keep pushing them, I know it's so tiring and you shouldn't have to but you shouldn't have to put up with the pain.

What are your symptoms? if you don't mind me asking.

[Bellefire]

I suffer from the following, which i believe are symptoms of endometriosis: Very heavy, painful periods; trouble conceiving (took 8 years), constantly exhausted, stomach pains leading to a diagnosis of IBS, bleeding from back passage, lower back pain, depression, pain just before periods.

Keeping a diary is a great idea, i'll start that tomorrow.

[Thecupcakesoldier]

Hi lovely, I'm writing this from my hospital bed after my second lap yesterday!

Keep fighting and don't take what they say for an answer! It took me 4 years to get diagnosed after being dismissed several times but as previously mentioned endo doesn't tend to show up on a scan, they usually do that first to rule out anything else.

Ask to be referred to gynaecologist and make sure your happy and confident with your consultant. For this operation I refused to go back to the consultant I was referred to as she was awful and now I'm with someone in really happy with.

Stay strong and keep pushing xx

[listofproblems]

Push for a laparoscopy. Endometriosis most of the time does not show up on scans! A laparoscopy is the only procedure that will let you know for definite! Good luck xx

[applebird]

Endo can only be diagnosed by laparoscopy. Sometimes it will show on an mri or a cyst can show on an ultrasound but most of the time nothing shows up. Discuss referral for lap with your gp, pref with Endo specialist x

[Naomi1002]

They cant diagnose endometriosis via scan, only by key hole surgery.

If you are still in pain go back to GP. Dont suffer...

write down what you feel and what symptoms you have. Dont let them send you home with your problems.

Good luck

[Hidden]

Hi

The same happened to me normal endometrium on Ultra sound scan. I had a 2 cysts which were though to be simple cysts on ultrasound but were actually found to be endomertiomas when I had surgery. The laparoscopy showed extensive endometriosis.

I wish i had made a record of my symptoms as it helps you and the Dr. You know your body best and ask for a referral to gynaecology. You shouldn't have to put up with this pain. You need answers. Take care and hope you get the help you need xx

[nsimpson]

My endo was only diagnosed when I had a lapo done to remove a cyst. Since then every doctor I have ever seen cannot see any endo in a scan even though I have it severely. So unfortunately you may need some more invasive investigation for a diagnosis. But the pain you describe sounds exactly like endometriosis to me.

I hope you get some piece of mind soon.

[Hidden]

I had extensive disease that did not show up on either the ultrasound or MRI...Dr. even looked me right in the eye and said I don't think you have it because your tests are normal but he did the laproscopy (the only way to truly diagnose it) and it was so bad he thought my appendix had burst although it was fine underneath all the endo scarring...anyway he unfortunately told me hysterectomy with ovaries removed would cure my endo and it did not...I have now been struggling with this disease and it's after effect for decades...all because of Dr.'s like this! It took me 13 years of searching myself to finally figure out what was wrong and I went in to say this is what I think I have and would like a lap to confirm or deny it...I suffered long before this but that was when I could no longer ignore the pain and by then it was too late...so please listen to your instincts they are right on! Hopefully they can get you to a qualified Dr. to help you! xx

[mylady77]

Hello there,

I had the same soul-destroying experience following an internal and external ultrasound scan. Couldn't believe they didn't find the cause of all the pain!

Pushed for my GP to send me to a gynae and she did an internal exam. Her face showed surprise and she said "The scan has missed a lot". She sent me for an MRI, did a biopsy and I'm awaiting results.

Hope your GP is sympathetic and happy to refer you. That much pain should always warrant further, and specialist, investigation!

Best wishes xxx

[skybluepink]

I believe there is discrimination going on as inordinate delays which don't make sense , the lack of fair examination & investigation after ignored it since first severely painful period at pubity effecting bowel & bladder too.I shouldn't be having to have to pay to get it diagnosed along with groin lumps, discharge & chronic utis acute 3 weekly not being appropriately cultured The attitude appears to be let it go too far then whip it out .This is not acceptable & Metoo situation from those directed by insurance companies who refuse to cover what say pre existing that NHS ignores ?!!.