u/saltwatertable

Normally I have lower back pain when I stand, that's my main symptom. It's severe so I don't walk more than 2 min around the house. I'm in the middle of may thurner evaluation.

Today I got new stabbing pain 9/10 in my groin. I stood up and I felt this whoosh of warmth down my left leg, so warm I reached down to feel for blood. Obviously there wasn't but the skin was warm.

I was nervous this was a blood clot or something so I went to the ER, they said it was probably a hernia.

I go to the IR doctor tomorrow but I feel like something happened around venous pooling.

Anyone have something similar?

I still have the pain but it's less with meds and strictly laying down (no sitting specifically).

Just met with the vascular surgeon and she says my case isn't extreme enough to warrant treatment and I should re-scan in six months.

Had a CT scan with contrast and left ovarian vein measured 10 mm and was diagnosed with mild pelvic congestion. Side note: I also have severe hyperadrengic pots.

No notes on nutcracker syndrome or may thruner other than the veins looked fine.

I do realize that a lot of women have some enlargement of pelvic veins but don't necessarily need intervention. Her main points where that I don't have varicose veins in the legs, and my pain is mostly lower back on standing which is unusual for POTS and PCS.

What should I do? Let this thread of investigation go? Or find another vascular surgeon?

Edit: I went to the lab and requested an addendum because it appeared that the radiologist read the images without the clinical context, which I had sent at time of booking, and they did it! Like within an hour. So now I have the corrected report with the measurements for pelvic congestion. Thanks everyone!

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I have an appointment next week with my vascular surgeon but my CT scan with contrast report just came back and they didn't mention anything about ovary veins or arteries. It was labeled as (I'm translating to English):

Procedure: Non-contrast and contrast-enhanced abdominal CT with axial slices and sagittal and coronal reconstructions

but my doctor requested an "abdominopelvic CT with arterial and venous phases" and the reason was pelvic pain and probable pelvic congestion.

The report says nothing about ovarian veins or pelvic varices. Essentially and didn't measure or describe any of the features of the veins, just details on my organs.

Should I message my vascular surgeon office and try to escalate this or am I off base here? I feel like the scan was correct but the report was wrong.

I'm posting this here because I used this group to research and I just wanted to add my experience in case it helps someone else. I have MCAS/hyper pts/heds.

I am on cetricizine (H1 blocker) 20 mg bid, famotidine (H2 blocker) 40 mg bid and Montelukast 10 mg (reduces leukotrienes)

Ok so I had a mold exposure that really set me off but beyond that I had facial flushing, all over itching, severe gi issues and brain fog as my main symptoms. The H1/H2 blockers helped with that and I left the mold environment, got better, ate homemade low histamine fresh foods but months later I noticed my back was still itchy, if I scratched my skin it left marks and I have hives on my bottom and waist from compression garments (delayed pressure uticaria). I noticed the skin scratches weren't raised and turned white when pressed so it's not dermagraphism, maybe just heds delicate skin. Still the uticaria and itching seemed like MCAS.

I started Montelukast in hopes it would address the remaining issues, since I was already on a H1/H2 blocker and Ketotifen is hard to get. My pots remained severe and I wanted to address as much mcas underlying issues as possible.

Montelukast made my arm swelling go down. I didn't realize I had arm swelling. I had sore shoulders too but just assumed I slept wrong on them. (I would later find out this is all MCAS)

But the itchy skin and pressure based uticaria continued so I got my hands on Ketotifen (not easy!). I was started on 1 mg and immediately flared. Hr and bp were up, I slept badly. I tried to power through but couldn't. I stopped. A week later I tried again on a lower dose. Same thing.

So Ketotifen makes adrenaline receptors more sensitive for about 4-8 weeks as you adjust. If you have hyperadrengic pots then you have a ton of adrenaline, norepinephrine etc constantly being pumped into your system, then the ketotifen makes the receptors more sensitive and boom flare. The second thing is that Ketotifen is mildly anticholinergic -- not as bad as benadryl but if you're super sensitive it might not be great for dysautonomia.

What finally worked:

Mestinon and propanolol (which I was taking anyway) moved to be timed with ketotifen so they could offset the part of Ketotifen that was flaring me. (Mestinon is cholinergic and propanolol blocks adrenaline before it can bind to the Ketotifen sensitized receptors).

Was able to take 1 mg Ketotifen x 2 in a day without flaring.

So far Ketotifen reduced my pain, swelling and brain fog right away but I will take a few weeks to know the full effects. I was really shocked at how many symptoms I still had after all the meds, diet changes, new environment etc.

If any of this sounds like you, I'd check it out.

My cardiologist waved this off but I want to go to get evaluated for pelvic congestion.

1. Pots started after pregnancy

2. Bikini area pressure since pregnancy (years)

3. Standing or walking caused severe lower back pain that was instantly fixed by sitting down or laying down

4. 1 year on meds and symptoms have improved across the board EXCEPT ability to stand has not. I have pain after 3 minutes by 7 minutes it's severe and difficult to continue. By 15 min I'm about to faint and can't communicate

5. Standing in chest high water in the pool I can stand for hours, zero symptoms.

6. Super heavy periods after last baby, had to start hormones because I would bleed through in public with tampon + pad.

7. Stabbing pain occasionally during sex

8. Hyperadrengic pots with hypermobile spectrum and MCAS.

The main thing that always bothered me is that while I have a POTS DX I don't see a lot of other folks with the crippling pain. I'm basically housebound and use a wheelchair to go out.

Does this sound like PCS? What's the process for getting evaluated?