If not endo then what?

[Beth1002]

I’m a little bit lost...I’ve been seeing a doctor(s) for about 4 years with severe pelvic pain, heavy bleeding, irregular bleeding and bloating etc all endo symptoms. Multiple hospital stays and too many tears. I’ve had ultrasounds that have been clear and sometimes cysts. I had a lap last month and was told I was clear of any endo. My doctor is a specialist I think but I just have a gut feeling somethings been missed. I’m 24yrs old and dependent on tramadol and now I have oramorph at home when it gets too debilitating. I had the Mirena coil fitted too and been told to expect pain but this can’t just be from that?! I honestly don’t know what to do next. I’ve fought for an MRI and it’s happening next week but it’s only looking at my back because I said the pain radiates there.

If you’ve got this far I appreciate it and any help/advice is highly appreciated. My mental health is taking a huge hit from this all. I feel like I’m going crazy or something like being told it’s all in my head

[CryBaby91]

I sadly can't say I've managed to get a diagnosis either love, I'm about 10 years in to trying to find out what the hell is wrong with me. Been a long journey but only the endo route for the last 12 month, pre that it was suspected lupus (miscarriage is a common symptom in both, most of the symptoms are very similar).

Anyway, all I want to tell you is not to give up. If you aren't getting answers then please keep pushing, I gave up a few years ago and stopped going to the doctors, took the painkillers and just accepted it was in my head. It wasn't until my husband heard about endo on the radio that we began getting some answers! So please never give up, keep pushing them. And don't forget you can ask for second opinions, new doctors etc to look at you. Maybe contact a specialized endometriosis centre, I believe some other ladies will be better help in that regard though as I don't have the information.

I hope you get answers soon. Lots of love

[gettingusedtoendo]

I’m so sorry to hear, sounds beyond stressful and demoralising. I wonder why they agreed to do a lap without evidence of endometriosis? I’ve had an MRI which showed endometriosis but they are not pushing for a lap. Seems everyone’s experiences are so varied. I really hope you get some answers soon. Best wishes

[USgalwthendo]

In a small set of cases even a specialist can miss endo during a lap. And one of the odd things with endo is that a large obvious amount of adhesions could cause very little pain and in another person a very small amount of adhesions can cause debilitating pain. I can only suggest follow up with an endo specialist center and a second opinion as another member mentioned. There may be a small chance that it was missed but there is still a chance.