Undiagnosed but starting to think it's adenomyosis

[Albeon]

I've been having severe symptoms for over a year now and the only 'treatment' I've had is tricycling the combined pill. This has taken the agony of the periods down a few notches but to be honest my most worrying symptoms persist. When my symptoms first started I kept getting some random bits of bleeding outside of my period. Along with lower back pain. Over time though this bleeding has gotten out of control and now I just feel it's normal to have bleeding every day. It seems to me that when I tell people this they think I'm exaggerating like 'surely she means spotting and she's not literally bleeding every day' but I AM. It's not as heavy as a full blown period but it's more than spotting. Every day and also with pain and cramps. Obviously I'm depressed anyone would be with this. Honestly it's so distressing considering I had absolutely normal bleeding patterns only a year ago and I'm only 27. But I've been told that bleeding at the wrong time ie every day isn't a typical endo symptom, and reading the (very limited) info available it seems that my symptoms line up more with adenomyosis but of course no one can tell without investigation.

I have my next gynae appointment next month (the first one he basically told me to go away and come back in half a year). Previous tests include infection, bloods and ultrasound all of which found nothing wrong. Do you think that asking for an mri would be good? From what I've read mri is good at detecting both adenomyosis and endo if it's quite grown. I'd like to think they'd suggest an mri but I'm sure we all know they rarely approach our health problems with any degree of concern. Any advice would be much appreciated.

[AllthatGlitters]

Hi Albeon, I wanted to offer some advice as like you I have severe issues with bleeding and pain and being low on iron.

I have had the usual ultrasound, hysteroscopy, bloods but the only thing that diagnosed me with adenomyosis was an MRI scan. It showed up thickness in my stomach which indicated that this is why I suffer with flooding, labour like pains, blood problems. I have been bleeding for months now. Can hardly function. Can hardly work. It’s effecting my life so much. I was told a hysterectomy would not take the pain away.

I would suggest you push for an MRI scan as that may well give you answers. You are in the MRI for about 20 mins and it’s a wonderful thing if you get a diagnosis, I was so pleased as it meant I was not imagining all of this and it had an actual name.

If you have any question feel free to send me a message x

[Albeon in reply to AllthatGlitters]

Hi there thank for your reply!

It's interesting to hear that someone with similar symptoms was diagnosed via mri. Good for you that you got the information you needed.

Sorry to hear you've been in pain too, how you describe it as being barely able to walk sounds like how I was before I went on the pill. The pain and bleeding are still there but it's much less. Before taking the pill I got such bad inflammation that walking became difficult which was awful. And trying to sleep was hard too. Are you not taking any hormonal treatment or anything else for it? I hope they agree to give me an mri, I can't see how they could refuse when these symptoms have been ongoing for so long.

[Albeon in reply to Albeon]

Also have you come across this info on adeno? I found it to be one of the best sources I've come across

sciencedirect.com/topics/me...

[AllthatGlitters in reply to Albeon]

If they refuse you ask why, then go to another doctor until one says yes. I am lucky as I have a fantastic doctor and I don’t have to really push for anything. I am sure she sees how much I am going through. Go in at your worst and maybe take someone with you for support.

I am on the pill as well as menefemic acid and codeine for when it gets really bad. Failing that i end up in hospital on morphine x

[Albeon in reply to AllthatGlitters]

I'm sorry to hear how hard it's been for you but that's fantastic that you have such a good doctor.

Thank you very much for the advice, I feel a little better about my upcoming appointment now and the next steps to take x

[AllthatGlitters in reply to Albeon]

No problem at all, we only learn from other people’s experiences. I didn’t know anyone else with these issues until I joined this site. So glad to have come on here x

[AllthatGlitters in reply to Albeon]

Good luck and let me know how you get on. X