Just here for a rant about no diagnosis...

[TallulaShark]

I'm just so frustrated, I have every possible symptom of Endometriosis as well as severe and widespread adhesions as found at my lap. How can it not be Endo? Pelvic pain, severe bloating, constipation/diarrhoea, bladder problems, haematuria, very heavy bleeding and large clots, ovulation pain, pain after sex, hip and leg pain, lower back pain, fatigue... adhesions fusing my bladder, ovary and fallopian tube to my abdominal wall, as well as on my uterus, vesicouterine pouch, bowels and liver. Ultrasounds are normal, they won't send me for an MRI. I could cry, I just feel like giving up. I've had constant pelvic pain since my last Ultrasound on Friday. I'm so bloated all the time that it hurts and I can't wear a lot of my clothes anymore. I can't sleep well because of constant bladder urgency. And don't get me started on how I can't even leave the house on my period. I have a hysteroscopy on Thursday, which no doubt is going to be "normal" and then that's it, no further plans for anything else other than waiting for another lap for adhesiolysis. My hat's off to all of you who have fought for years and years, I'm just over two years in (at least since my GP listened and referred me) and it's exhausting already. I don't know what to do next.

[Twin4Life]

I am so sorry you are going through all that. It sounds so frustrating and tiring. I wish I could give you some advice, but all I can say is keep fighting. It's the only way to get anywhere with the NHS. I wish you the best of luck on your health journey. Take care of yourself as best you can!

[Cocoacupid]

hunni there is always a reason for scar tissue and adhesions believe me I’m so sorry that they aren’t exactly listening to you. Please get someone to push for you for an mri . My other scans were normal even though had severe endo please push and get someone to advocate for you. Sending hugs x

[Jollie93]

Hey! Just wanted to say I'm in the exact same situation as you, it's so so horrible and sorry you're going through it ❤️ I also have every symptom you've listed, had a lap and they found adhesions/cysts but no endometriosis diagnosis. The specialist booked me in for a lap immediately and didn't even think an MRI was necessary beforehand because I had every symptom, so felt very defeated and confused when I had no answers after the lap.

I think all you can do is keep pushing and don't take no for an answer (easier said than done, I know). There's always a reason for your symptoms, and not having a diagnosis makes it even worse. Has your gp ruled out any other conditions they suspected? I'm at the point now where they have ruled out almost everything else, and my GP agrees that she still thinks it's endometriosis, so I'm also pushing for another lap.

I imagine you already are, but don't be afraid to push for referrals/a plan of how they're going to get you a diagnosis, from my experience the GP is good at fobbing off with painkillers/IBS diagnosis. But I've found going to my appointments and asking for next steps/a clear plan of action helps. Say you need more, because people experiencing this pain deserve more xx

[TallulaShark in reply to Jollie93]

I'm sorry you're in the same boat! I think the gynaes are going with PID but honestly I'm not convinced, some of these symptoms I've have for as long as I can remember and I've never had an STI and I feel like I would have noticed if I had a pelvic infection. So I'm not ready to accept that diagnosis yet. Plus they keep pushing for me to have the Mirena and I read that the Mirena isn't suitable for people with PID anyway, so that's even more confusing. I had a TV ultrasound last Friday and I'm having a hysteroscopy today and will be discussing the results of both. Everything is riding on my appointment today, because if I still get no answers then I'll be going back to my GP.

[Sunset-lady]

I'm completely confused. Lesions like you have described ARE the result of endometriosis. Most women aren't fused internally. How can they just say it's scar tissue, from what? It may not be "active" (as my consultant refers to it ) but it's still very much there under these lesions. Why are they so reluctant to diagnose you with it when it's so very obvious? Was it an endo specialist who did your lap? I'd go private for a second opinion. We shouldn't have to keep having surgery - which makes the scarring worse!

[Sunset-lady]

I paid for an MRI and it was very clear x

[TallulaShark in reply to Sunset-lady]

It was a locum doctor who did my lap, I don't know anything about her and haven't seen or spoken to her since. I paid for a private ultrasound which was also "clear" but now I wish I'd paid for an MRI which was my original plan.