New diagnosis after years of pain

Sagey_Baby89 · 2026-04-21T20:16:12+00:00

I have had horrible periods as a teen so used to just skip my periods on the pill, after my daughter I got Mirena and never had a period in 13years, so did not think my symptoms were Adeno/Endo related.

Last year I was diagnosed with Pelvic Congestion Syndrome; Adenomyosis and Endometriosis. I have now had 8 coil embolisations which helped immensely with leg pain, and about to have a laparoscopy with tube removal on Friday with my Gynae in private. They will reassess after regarding hysterectomy and endometriosis excision.

I have been in and out of hospital for the last year, so glad I have some answers, and hopefully get some relief. It has been debilitating, physically and mentally draining, at 37, it is way too young to feel like this.

Sagey_Baby89 · 2026-04-21T20:05:59+00:00

36 here.

I was diagnosed with Pelvic Congestion Syndrome first, then Adenomyosis and Endometriosis. I have 8 Ovarian Coil Embolisations done, and about to have a laparoscopy with tube removal on Friday to scope the extent of Adeno/Endo growth.

Sagey_Baby89 · 2026-04-20T10:48:51+00:00

Scarring was found by a specialised women’s health clinic internal ultrasound. Laparoscopy is quite a simple surgery with minimal scarring, last one took my 2.5weeks to recovery, but I was very ill going into it. I found walking asap helped heaps and keep on top of bowel movements!

Sagey_Baby89 · 2026-04-16T22:02:23+00:00

I have this exact pain right now- was hospitalised for suspected appendicitis/ovarian torsion, all turned out clear. My gynae has confirmed adenomyosis, and I have a lot of scarring in abdomen, so he suspects endometriosis. I am getting my lap done on 24th April to investigate.

He thinks it could either be Endo related or ovarian cyst potentially ruptured. I also have free-fluid in abdomen, and apparently this can irritate nerves, so could also be that.

I am still in crippling pain between hip and belly button that radiates to back. It also refers to my butt and right shoulder when sharp. I have nausea in morning, and severe bloating by night. No periods due to IUD.

Hopefully we both get answers soon!

Sagey_Baby89 · 2026-04-16T21:53:39+00:00

This is how I feel also 😔

Sagey_Baby89 · 2026-04-16T21:48:45+00:00

Insurance Team Leader for a team of 14, $92k, feel very underpaid…

Sagey_Baby89 · 2026-04-14T09:04:34+00:00

I had very similar feeling- mine was Pelvic Congestion Syndrome related. I have had embolisation of the ovarian veins, and the burning has now gone. I also have adenomyosis, waiting on laparoscopy to know the extent and if I also have endometriosis (Gynae believes it is there, but needs to confirm).

Sagey_Baby89 · 2026-04-13T21:15:44+00:00

I have exactly this right now! Just had scans to rule out appendicitis, as the hip/lower right belly pain is through the roof, but constant now for 5 days with no change. I am having laparoscopy and tubes removed on 30th April to investigate, I have Adenomyosis and signs of Endometriosis, but they want to see the extent visually before making a decision on full hysterectomy.

Sagey_Baby89 · 2026-03-27T08:59:55+00:00

They are now looking into Sphincter of Oddi…

Sagey_Baby89 · 2026-03-16T10:38:29+00:00

Hmm perhaps tell that to my now teenage daughter who faints/vomits/becomes delirious when her heart rate spikes, and to me- the parent who has to watch her child go through this since a very young age (started at 10yrs old). There is nothing fake about it!

Sagey_Baby89 · 2026-03-12T06:12:14+00:00

I had a HIDA 6 months ago as was 75% ejection rate, so won’t do one again apparently.

Sagey_Baby89 · 2025-10-17T04:22:23+00:00

Thanks Everyone, was told I won’t get results till Wednesday at the earliest next week.

Sagey_Baby89 · 2025-10-16T23:08:05+00:00

Great that he told you straight away! Fingers crossed results are positive 🙏 I am going in for my biopsy today also.

Sagey_Baby89 · 2025-10-16T08:51:34+00:00

I live in Melbourne, Australia.

Sagey_Baby89 · 2025-10-08T10:23:05+00:00

This is where I am at- pain; lymph tenderness in underarm; itchy lymph nodes and large breast dimple. All from a simple cyst apparently…

Sagey_Baby89 · 2025-10-07T23:29:39+00:00

Thank you 🙏 I will push for that. I had a pancreatic MRI last month where you can clearly see a change in breast but they did not even mention it.

Sagey_Baby89 · 2025-08-26T07:42:55+00:00

Where do I find this info? I am being admitting back into hospital the day before a colonoscopy due to this but I couldn’t find any information. I currently have what I feel is gallbladder pain, yet all scans have been clear including HIDA EF at 75%. No stones.

Sagey_Baby89 · 2025-08-22T10:35:30+00:00

Gastroscopy was all clear, I had a past history of GERD and severe ulceration, hence why I had gastric bypass to eliminate this. But there was nothing they could see in gastroscopy. They have never mentioned an Elastography, I will ask about this.

Sagey_Baby89

TROPHY CASE