pelvic congestion syndrome

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Digging into the connection between POTS and Pelvic Venous Insufficiency

I’ve had POTS for years now… along with hEDS, Endometriosis, Narcolepsy, Factor V, and Homocystinuria. I had a full hysterectomy due to endometriosis/adenomyosis and thought the constant severe pelvic pain was a thing of the past. Unfortunately, my symptoms were exactly the same post hysterectomy. I researched for years for anything that could explain my POTS, other than just “lote of people with EDS have it”. Then a few months ago I stumbled upon Pelvic Congestion Syndrome, aka Pelvic Venous Insufficiency, and I broke down in tears reading the symptoms.
Chronic/persistent, severe (5-8/10) abdominal/pelvic pain
Pain after sex
Pain that is worse after sitting/standing for a long time
Dysautonomia/POTS symptoms
Bladder pain
IBS like symptoms
Vulvodynia, varicose veins in the genital area and thighs
The list goes on.

No doctor from any specialty was able to tell me what this was or offer it as an explanation to the myriad of debilitating symptoms I had. I was so desperate for answers that I found the only vascular surgeon in my area, got a referral and got him to order me a CT scan of my veins. I had areas near my kidneys of expanded veins extremely suspicious for Pelvic Congestion. In 1-2 weeks I go see another Vein specialist to get a venogram done, then if needed, schedule embolization of whatever problem veins are causing this.

What triggered this? For me, pregnancies. The more pregnancies, the more at risk you are. However it can and does happen in those who have not been pregnant along with Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). It is believed that it is responsible for 40-60% of ALL chronic pelvic pain! It also exists in men as an issue with iliac veins (MTS). It can cause SEVERE abdominal pain that seemingly has no other cause. Doctors will not always advocate for you or give you answers as I am sure we all know by now, so please advocate for yourself! If any of this sounds familiar to you, I urge you to find a specialist that is knowledgeable on Pelvic Congestion/Pelvic Venous Insufficiency. There is a chance you can walk away from a minimally invasive procedure 80% better. And that’s something, to me, worth sharing with any person suffering from POTS.
#PosturalOrthostaticTachycardiaSyndrome #PelvicCongestionSyndrome #pelvicvenousinsufficiency #Chronicpelvicpain

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“Sometimes walls are there so we can lean on them and rest.”

Lately I have been hitting some walls and maybe it’s a sign to rest before fighting on. My body needs breaks and I give it those, why can’t I give myself a break mentally and in fighting the medical profession. A breather may be in order. Everyone out there feeling really tired, lean on that wall for a bit before you climb it. #JointHypermobilitySyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Lipoedema #Lipedema #PelvicCongestionSyndrome #LivingWithPOTS #Fibromyaliga #ChronicPain #BackPain #HypothyroidismUnderactiveThyroidDisease #Bipolar2Disorder

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Doctors who don’t “believe in labels” are quite possibly my least favourite kind of doctors. Especially when the reality is they aren’t treating my specific symptoms anyway. You are underestimating me when you tell me patients go to Google something and decide they’re going to die. I can promise you patients want to know what to expect. They want to research everything so they know, so their treatment can be the most beneficial to them. And also, don’t tell me that if I had ‘insert condition’ hear I’d have a specific look. I didn’t realise everyone was the same, sort of defeats your whole point against labels then doesn’t it? #HSD #HEDS #SLE #PelvicCongestionSyndrome #Lipoedema #HypothyroidismUnderactiveThyroidDisease #Bipolar2Disorder #LivingWithPOTS #ChronicPain #Migraine


Has anyone seen a vascular surgeon for PCS? I think I have this condition. I had to research on my own. I feel all the symptoms but mainly malaise.


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Chasing doctors is often worse than the pain

I am sure I am not the only one who feels this way. After every diagnosis I've gotten I've felt like, yes I feel like I've found answers. My body then deteriorates more and in new fun ways so it's back at it. Of course, none of these things are obvious to look at me so you have to go convincing people you actually have more things wrong with you. I am recently back on the "please diagnose me with what's actually wrong with me and help me" train and I was really only off of it for a couple of months. I often feel like saying, "Hi, person living in my own body here. Maybe you could listen to me?" With the Covid shutdowns, it's been almost impossible to get an appointment to even be able to say that to anyone. I completely understand the priorities and I don't want to be selfish but the pain is truly awful. #hypermobilityspectrumdisorders #PelvicCongestionSyndrome #Lipedema #BackPain #ChronicIllness #BipolarDisorder #Anxiety

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Wondering if anyone else out there has this body humming/ vibrating experience? Either during a #Manic episode or some other time?

I have been diagnosed with some many things #ChronicFatigue #GeneralizedAnxietyDisorder #Fibromyalgia #POTS #ComplexPosttraumaticStressDisorder #MCAS #InterstitialCystitis #PelvicCongestionSyndrome #ChronicPain #PelvicFloorDysfunction #Neuropathy I could go on but you get the idea...

so many diagnoses, so little "cures" most of the time I am just laying in bed wishing I had the strength, energy or just a little less pain so I could get at least a few items on my ever growing to do list checked off... but occasionally and for no particular reason that I can discern I have a day, sometimes longer, of complete #Mania - I can't slow myself or my mind down at all and when I lay down to try and sleep I feel like my whole body is humming with electricity and it just won't turn off.

l wish I could say I get my to do list accomplished on these days but I'm generally so scattered that I bounce from one thing to the next without actually completing anything. This episode is coming after a short period of days of needing 14+ hours of sleep and barely being able to get out of bed.

I have also had severe #constipation this week and did a Fleet enema on Wednesday, which unfortunately did not clean me out very well. is it possible that the stimulant laxative in the enema could create this hyperactivity?

Wondering if anyone else out there has this body humming/ vibrating experience? Either during a manic episode or some other time?

I also find it nearly impossible to eat when I get like this...

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What Next?

I was diagnosed with #PelvicCongestionSyndrome on Jan. 7 of this year by a radiologist after an extremely painful IUD placement. Almost a year since diagnosis and I still don't have any answers. I was told shortly after my diagnosis to seek a doctor closer to my university that could help treat the PCS and seek out other things that could be causing my pain. The gynecologist I went to was terrible. She repeatedly told me that I was far too young to have PCS and it was probably all in my head anyway. That I was overly hormonal and just experiencing changes, and that it couldn't be true, since I hadn't had any kids (that is not a real thing, any of these you can have without having kids). She refused to do the laparoscopic procedure that was suggested by the other doctors until I started bringing "witnesses" to my appointments (3 months of appointments).
I was in surgery for less than 20 minutes and never got a diagnosis from it. She stated "it doesn't look like you have endometriosis, but you have adhesions and fibroids throughout your gut." She wouldn't see me after this and I can't find any record of me even having the surgery scheduled, let alone what the results were. She also refused to refer me to a doctor that specializes in these things.
Fast forward from April to now. I recently found out that this gynecologist and a couple of the doctors I saw while hospitalized this year have many malpractice suits against them. The charges? Negligence for ignoring patient diagnosis and concerns, leading to traumatic and serious health problems. Apparently my gynecologist is known for just keeping things to herself and misdiagnosing patients or completely missing the diseases to being with. Since I was still fairly new to this area when I started seeing her, I didn't know about all of this.
Now I'm worried. What if she missed my diagnosis or just lied to me because she wanted to be right? What do I do next? I can't find my records of ever even having the surgery, let alone the results. I'm frustrated and angry that this is even a possibility and I could be right back at square one.

#GenitoPelvicPain #pelviccongestion #PelvicCongestionSyndrome #Endometriosis #ChronicPain #ChronicIllness #Michigan #MichiganUniversityStudents #PatientAndDoctorExperiences



I often forget how close I am to others that under stand. An app I can open anytime to vent, relate, or just feel what I’m feeling.

I’ve been struggling.. a lot. Just trying to keep up with life. Trying to figure out why I’m sick 24/7. Trying to be the best mom I can be to my beautiful little monster. Dealing with constant pain, symptoms, anxiety, depression at all times. It’s terrifying not knowing what’s going on with your body. Not knowing how it’s going to feel day to day, even hour to hour. Trying to keep up with being myself- not my illnesses, being a mom, a girlfriend, daughter, sister, aunt, cousin, friend..

I’m doing my best to take care of myself but the doctors don’t have answers.. or they have answers with no solutions.

Why is my ASO in the 500’s, it was in the 400’s in February and April. I’ve been on antibiotics and steroids 7 times this year alone. WHY DO I STILL HAVE AN INFECTION 😩

As much as I don’t want to be consumed by my illnesses, I still need to learn to live with them. I need to coexist with them.. because they chronic.

I have so many questions left unanswered about my health but I do have a few so far.

Thanks for reading my late night insomnia rant/thoughts that don’t entirely make sense 🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃

#Fibromyalgia #GastroesophagealRefluxDisease #PelvicCongestionSyndrome #Anxiety


Am I in pain because of my anxiety or is my anxiety causing me pain 🙃 #Anxiety #ChronicPain #Fibromyalgia #PelvicCongestionSyndrome #Depression

Can’t sleep, can’t decide if my new pain is me being a “hypochondriac”, cysts, my appendix or my #PCS 😩 my mind won’t stop trying to figure out what’s wrong with me. It’s not extreme pain and I’ve gone to the hospital for worse and wasn’t helped.. just tried of the constant pain and feeling on edge from it.