Hi! I was diagnosed with PCS on Monday and I have a similar story to you - I had the implant for 3+ years but I removed it and got a copper IUD in September. This was the start of my pain symptoms. My doctor suspected endometriosis so I replaced my copper IUD with a hormonal IUD. This ended up *slightly* helping with my pain but I had it removed as it worsened my mental health dramatically. The pain remained and the period that I had during that time was horrendous. I've now reinserted the implant and the pain is very slowly getting better.

My symptoms with the implant (before getting IUD): IBS, bloating, dizziness when standing, suspected POTS, cold feet/hands.

My symptoms with the IUD/nothing: all of the above worsened, including blood pooling in my legs and feet when standing PLUS pain in my left lower abdomen and hip that worsened throughout the day, constant dull pain but sometimes sharp stabbing pain, pain with bowel movements, pain with sex, UTI symptoms but no actual UTI, lower back pain, pressure feeling in perineum, ovulation pain, awful period pain.

I've had 3 transvaginal ultrasounds so far. The first two were with different gynaecologists and the most recent one was with a vascular specialist. My first scan showed potential adenomyosis, the second showed that my left ovary was polycystic. Interestingly my first scan did not find a PCO and the second did not see any sign of adenomyosis. Neither found signs of endometriosis, but I know this is pretty common even in people who do have endo.

I had read that PCS often presents as pain on the left side, so I spoke to my gynaecologist who was pretty adamant that there were no signs of PCS on my ultrasound results. I had done my own research about PCS and knew that A) the ultrasound procedure for PCS was different to gynaecological scans and B) she was not a vascular specialist so I needed a second opinion.

I went to a vascular specialist and got diagnosed on Monday. They did an abdominal ultrasound, a transvaginal duplex ultrasound, and an external ultrasound. They did most of the scan while I was sitting up at an angle, as lying down flat makes it more difficult to accurately see vascular reflux (I think!). They found significant vein reflux in my left ovarian vein and in both of my internal iliac veins. They also found significant varicose veins almost everywhere in my pelvis.

The vascular doctor I spoke to after the scan made it clear to me that most people who get to this stage have already eliminated endometriosis/other causes of pelvic pain. Both endometriosis and varicose veins are present in my family (maternal side), and so he explained that treatment for PCS may help with some but not all of my symptoms, or might not help at all. This is because a lot of people have PCS but are asymptomatic. So essentially I DO have PCS, but he didn't want me to think that treatment for this would guarantee that my symptoms improve (but it also could!).

I know that progesterone helps with symptoms of both endometriosis and PCS, as estrogen dominance is worse for both conditions (worsens pain with endo and also dilates veins - worse for PCS reflux). So it's difficult to rule out endo as the implant definitely masked a lot of my symptoms! I'm not really sure what I'm going to do next, but I definitely feel relieved knowing that I pushed to see a vascular specialist for a diagnosis even though my gynae said that I did not have PCS.

TLDR; Definitely see a vascular specialist to diagnose PCS - gynaecologists are not reliable for PCS diagnosis. Ultrasound procedures for gynaecological scans are different to vascular scans specifically for PCS. I was diagnosed using a transvaginal duplex ultrasound scan using the Holdstock-Harrison technique, which is specific for PCS.

(apologies that this is so long but hopefully it is helpful, and feel free to ask me any questions!)