Endometriosis? Not diagnosed yet

[JujuB77]

In June 2020 I had a niggling pain in my left groin area so saw my GP, over the next few weeks this changed to contraction like pain in my tummy and terrible cramps. Had an ultrasound in Sept 2020 where they said I had a bulky uterus. CA125 tests done which were higher than normal (70s). Was seen by gynae in Dec 2020 and fitted with a mirena coil due to heavy periods and was told that if it was endometriosis mirena coil is first thing they try. Gynae said they would be happy to see me again. Ca125 levels reduced a short while after this. Since Dec 2020 I was then referred to gastro as my GP kept insisting that I had irritable bowel (even though I had told them my bowel movements were normal). I asked to see gynae again but GP said to wait until I had been seen by gastro! I had to wait until Nov 2021 to have a 30 min phone consult with gastro to be told that he felt it wasnt irritable bowel and that it could be endometriosis as they often have similar symptoms. He referred me to gynae at the beginning of November and Im still currently waiting to be seen as in between the referral to gastro gynae had discharged me! I have had daily pain for nearly two years, bloating, cramps, small bleeds every month (since having mirena coil fitted), pain intensifies when period is due. Pain is in left side from my groin to under my left breast round to above my tummy button and back. A lot of the time it is in my left side just at my hip. I also have a throbbing pain there once Ive moved by bowels. The pain is the last thing I think about at night and the first thing I think about in the morning. Ive really changed as a person since June 2020, very tired, no energy, no get up and go and somedays I just want to stay in bed (where Im not even comfortable any more) but I need to keep working and keep being a mum to my 4 boys. I just wondered whether any one can relate to my symptoms as I havent been diagnosed and the anxiety of not knowing if it is endometriosis or maybe something else plays on my mind every day. Ive been told that it could be a 36 week wait for gynae (from Nov 2021) and Im still waiting for a CT scan since September 2021.

[Anne357]

🤗 hug 4 u JujuB77 i know how u feeling.In the same position like u ,very similar symptoms,constant pain,no diagnose yet,waiting time list...U r not alone x

[JujuB77 in reply to Anne357]

Aww Anne356 thanks. We will get through this 🥰

[Laurak26]

Hello

I’ve got a referral for June, but I’m very similar - primarily on the left hand side, but also in my back, and in my legs. I also get shooting pains in my bum sometimes…Also sometimes stabbing pains when I actually go to the toilet.

I hope you can get some answer soon. I keep wondering if I’ve got IBS, but my bowel movements are all normal. I use to suffer a bit with a loose tummy during my time of the month, but at the moment I’m on the pill constantly as I can’t face the pain of a period!

Laura x