Adenomyosis or Endometriosis?

[sarahsarah123]

Hi all,

I had a lap a month ago which, during which my BSGE surgeon only found a few "very minimal" suspicious spots that actually came back negative for endo at biopsy- so technically I don't have an endometriosis diagnosis. However, I am still having lots of ongoing issues. My symptoms are:

- pelvic (uterine?) pain during periods and ovulation that radiates down front of legs

- left leg numbness during periods

- Pain/numbness that also radiates down my arms and face (?!) during periods

-Week following period I get extremely fatigued/flu-like symptoms, sometimes low grade fever

- Bleeding brown blood after period/before ovulation/after sex

-Long irregular cycles (35-45 days)

-Sometimes abdominal cramps related to bowel movements, but doesn't get worse during periods so may just be IBS.

I'm wondering if this can all be attributed to adenomyosis (which I technically don't have a diagnosis of either, as it didn't show up in mri/ultrasound/during lap), or whether my consultant may have missed some endometriosis during the lap? My symptoms, particularly the extreme fatigue, makes me sure there is something very wrong. It’s just frustrating to still not have a diagnosis- just get told to go on the pill, which I have done, but would still like some answers! Would love any opinions/advice. Thanks guys!

[BiggapTwins1]

Hi!,

I am no expert. Suffered the same as you. Sorry. Plenty of gynae issues yet I am led to think Endo and Adeno too. An Endo expert is needed, as looking all around, behind and on outer gynae organs is necessary. On Facebook thete is an awesome group with an awesome resource of tested Endo experts worldwide: Nancy's Nook. Excision. If, by any chance, it is not either, they will still be able to tell you what it IS.

Good luck and best wishes.

[sarahsarah123 in reply to BiggapTwins1]

Hey, I am in Nancy's Nook, and a few other facebook groups too. I guess you're right, the best option really would be to find an actual Nook surgeon and have another laparoscopy to look around. I'm just loathe to do it so soon after my other one! But thanks so much for your reply Good luck to you too!

[lizzyxx]

If your surgery was performed by a general gynaecologist then I would say it is possible to miss it but if yours was done by a bsge surgeon then I think it's highly unlikely that they missed it as they are specifically trained in that area and they look everywhere. If you're still having symptoms though I would definitely say go back to your doctor as even though it's not endo that doesn't mean it can't be something else that's causing it x

[sarahsarah123 in reply to lizzyxx]

thanks, I think I will. My GP just seems to assume because I'm young and healthy-looking I must just be a hysterical woman with no actual problems. But maybe it's time for a new GP!