Pelvic Congestion Syndrome Community Group

Pelvic venous congestion syndrome PCS or Pelvic Venous Insufficiency / Incompetence is similar to the condition of varicose veins in the legs. In both cases, the valves in the veins that help blood flow toward the heart do not work properly. As a result, blood pools in the veins, and the veins in the affected body part stretch and bulge. In pelvic venous congestion syndrome, the enlarged veins cause pain in the area around the uterus, ovaries, and vulva. and other symptoms that may not often be

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MY Pelvic Congestion

hi everyone,
thought i would post about my own personal experience/sensations and symptoms with Pelvic Congestion.
i'm feeling a little alone because i know it affects me some what differently and badly all over that i can not work or go out and do anything... its been two years of my life stopping and im 24.
i suddenldy got ill near the mid to end of 2007 and it slowly got worse. i
it started with skipped, light and three week late periods for the first time in my life, diarreah non stop, very bad lightheaded'ness, random rather strong nausea, and some cold chills.
i wont write about all my doctor and specialist visits, or this will become too long ! ill just add that many kept on dismissing me and saying it was in my head and trying to put e on anti depressants ! to wait so long for all these appointments and then for them not to listen and turn you down has been emotionally rather traumatizing !
anyhow, i finally got diagnosed on the 10th of September by Laproscopy.
i thought i had endo as that was all that seemed to be left and what i felt with my physical symptoms. but all that time thinking it was endo.. something was nt sitting right, i found i was still different to other women with endo. it would not just affect my pelvis but all over and my key word that i said many times to doctors was 'preassure' (no doctor even mentioned this condition!).
so here are my symptoms in detail:
--alternating constipation and diarreah... always felt like something pushing on my bowels (constipation) or tickling it (diarreah)
--lower back pain (i knew what ever i had, that it was coming form inside my lower back area and causing everything)
--leg pain/hip pain/inner thigh pain.. the inner thigh veins are becoming affected
--preassure on vagina.. especially at period
--migraines (different than i had suffered all my life).. they streamed up from the local point (inside lower back).. i also would cramp at the base of my neck/skull
--cold chills.. also streaming from local point, it would go down my legs and all over like little shocks.. very intense chills
--hot flushes
--tail bone pain
--rectal pain and preassure
--fatigue.. like a heaviness from local point that would completely drag down my body and leave me breathless
--excessive gas.. would not come out, it would 'bubble' and 'pop' in my intestines
--late periods, skipped, very light bleeing, brown & black blood
--tender breasts at strange times of month or just constantly
--hormonal imbalance (tests showed low estrogen & high prolactin levels)
--numb limbs
--numb ears

some other words to describe in my initial symptoms above are:
burning, tingling, numbness, clammy, stabbing, radiating, throbbing, itching, bruised feeling, weakness, a feeling of being ill all over like the flu.

so now that i have my diagnosis all my symptoms make sense.
the affected vein is meant to pump the blood back up towards the heart but it back flows (causing the congestion) hence i get the strange migraines from the lack of blood flow, i get 'cluster migraines' which are known to be caused by faulty blood flow (it all makes sense!) and cosidering that i had always felt and described that what i felt from the local point and at my legs is also the same sensation i felt at my arms and up to my head. my arms have dialated veins (they are usually big) and they go numb and tingly all the time as do my legs and feet. my ears go numb too. also when i had my bloods done once the man had trouble getting the blood out.also bruised eye feeling and a weak vision which are also caused by lack of blood flow to the head.

also one of my symptoms (more a secondary symptom) is an increased heart rate, especially with movement and especially when the 'preassure' (preassure from vein) is very strong my heart rate increases trying to keep up. its my most overwhelming symptom (i mention it below at the end).

also my body shakes and tremors internally from the preassure build up and my hands shake. sometimes one of my leg shakes if i put preassure on it when i stand.

my inner thigh veins and my front pelvic veins (ovarian) are becoming worse with time. i can not walk much because the innerthigh veins hurt. my whole hip becomes numb, and i feel it from lower back radiating to the front and hips and down my thighs.

when i breathe in i cramp all up my back, i feel like an old lady.. every inch of my body is just hammered !

*my most overwhelming symptom/sensation is the immense preassure it creates all up my body (basically my whole body feels egulfed by it) my head becomes so tight and i feel like i have a huge bubble under my chest, so its hard to breathe in when the preassure is already so huge, very hard to explain. my throat aches, my jaw hurts badly and my ears get numb. (the numb ears are part of the lack of blood flow). when the preassure is imense i get very dizzy at the top of my head.

ok thats about it, i know its a little all over the place... i have tried my best to make it 'neat and in order' :-D i hope its not too difficult to understand, and most of all i hope someone can relate to this.

i have an appointment with the vascular specialist this coming tuesday, it was very lucky to get one... mum rang the hospital for me this week to push it and someone must have cancelled their appointment !




Here is my story that I posted in 2008:

I was 23 and being told that i need a hyst. 23!!! I laughed, cried and screamed. Denial, you name it. My mother said no way (her hyst ruined her life) So went "doctor shopping" I lost count and was on so many drugs for so many years I lost track. I have tried almost everything. Then i met this doctor who asked if I had been tested for Pelvic Congestion Syndrome. I was like huh? He said it was a clogging of the ovarian VEINS and unlike a UAE this was different and affected much more.

He made me do venogram which is where they injected me with dye and watched to see where it went. It should have flowed freely through my uterus and gyn region. HECK NO! It sat there. FOREVER. I looked at him and asked if this was normal and he said no and that it should have been gone within 60 seconds. Wow, i thought. AN ANSWER!

SO, i agreed to have the minor surgery to fix. Ladies no laser, no cutting, nothing. All they did was go in through a major vein ( i chose my neck - no scar too!) and then coil the vein off with a non-metal coil(nestor coils). The vein dies off and then a new one forms.

When i woke up, it was so weird. I felt so different like pressure was gone and things were different. Unfortunately, this doctor got me addicted to pain meds but i got off them and BOOM no pain at least major endo pain since. this was 4 years ago and counting.

I am throwing this out to you as a suggestion/alternative to surgery and a hyst, also to ask your doc and to look up. There is not alot of info about it but you can google it. It worked wonders for me a whole bunch of other women i know who have endo. I hope this story helps and please ask questions if you have any....

Hugs, Romi

P.S. Oct. 2009 I am still pain free, no pressure, no major cramping and everything has returned to normal. I did not explain all of my symptoms but I can if you would like me too. Keep the faith. This too shall pass and an answer will be yours! HUGS!

hey Romi,
i actually read this today again in the other forum... and i like the bit where you mention you felt the effects of the preassure alleviated immediately after waking up !
its great that everything went back to normal. it's sometimes difficult to see through the cloud.. when everything is so affected and so extreeme we think how can it ALL possibly go back to normal ! after all it did come on suddenly ! what must go up must come down !
it would be great to hear your symptoms... when you have time, i know to type it all out takes effort and alot of re-telling which we have all done !


Hey everyone!

I just read through my surgical notes and it turns out that i had a left ovarian embolization and bilateral internal iliac vein embolization. This is what my venogram results said:

Patient has Chronic pelvic pain, severe periods, vulvar vestibulitis, andometriosis with chronic pelvic pain. She complains of lower back pain, sharp stabbing and shooting, with radiation into the left lower quadrant , right lower quadrant, and thigh.

FINDINGS; The venogram revealed moderate congestion in the periuterine veins with abnormal fillings of the iliac system and filling that crosses the midline and the presacral area. Moderately delayed clearance of dye at 30 seconds, consistent with pelvic congestion. There was moderate congestion , especially on the right side in the periuterine veins. There was also abnormal dye uptake into the iliac veins, femoral vein, and presacral veins, consistent with PCS.

Ironically, during the venogram, pathology found more endometriosis as well, which they took care of. 2 weeks later I had the embollization.

The Findings of the embollization just said that it was successful, following sclerosis.It seems like my right vein has an issue with it. I have to look into it. Hope this helps!! I will post photos.

xoxoxo Romi

hey Romi,
did you have the coil embolization or just sclerosis ??? i though sclerisis could only be done on smaller leg and groin veins ?
im soon having my embolization. also my internal iliacs and gonadal/ovarian ones.

I'm glad I came across this. Thanks for sharing this. Everything you have mentioned is everything I'm experiencing for the last 10 yrs.. I've just been diagnosed with chronic pelvic congestion and having vein embolism on the 20th. I'm so excited and looking forward to moving forward and having my body back after being made to feel for years after my hysterectomy that it's all in my head. I'm positive it will work., but have nothing to loose as gynaecologists won't operate, on me due to past history, so it has to or I will continue to put up with this forever. I appreciate knowing that we aren't alone. ❤️️❤️️❤️️
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