Pelvic congestion

[needingadvice]

I was diagnosed with endometriosis and also pelvic congestive disorder.. does anyone know the treatment for this or is it something that i need to manage myself? It is very painful, and i am in a lot of pain most days

[beks169]

Hi i too have been diagnosed with pelvic congestion syndrome, a month ago. I was actually going in to hospital to have a fallopian tube removed as it was blocked (i'd had hip pain for 6 years with a diagnose until now). but when i came round i was told i had adhesions to my stomach wall which they removed and that i had pelvic congestion disorder, i was not given ant information, so i have just looked on the internet. I am due back @ the hospital next week so will know more. Are you on any medication ? i'm on a mixture of painkillers that change frequently as they don't work Glad to know there is someone out there like me how did you get diagnosed ?

[needingadvice]

ouch that sound so painful bless you! i wasn't given any info either, apart from having pelvic congestion is just like having varocose veins in your pelvis, and when you're standing, sitting etc makes the veins become more prominent meaning it hurts more.. im on mefinaminc acid.. parecemaol and cocodamol when im bad but it doenst seem to work though! they made the diagnosis when they did the laporoscopy where they found endo and pelvic congestion! yeah it is nice to know there are others out there who can understand and relate to the pain i get! Hospitals are useless, surgeon said he didnt real it was necassary to remove any of the veins as they would in a varocose vein surgery?

[beks169]

Hospitals, hey ? then you look on the internet and start the worst. Yeah thats what i read varicose veins, which i find really funny as i never have anything normal (i also have raynauds syndrome (for 20 years !!!, which is just coming more common) My GP wondered if i had Endo, but i conceived within first month of trying for our son. I hated it when i was pregnant (the pain) as it got worst but i just got told i had PGD (pelvic Girdle Disease i think) but i kept saying i had the pain before. I'm on Nefropram (Acupan), Ibuprofen & just gone on Gabapentine, after taking Amiltriptalyin (made me go wee eer two hours) My main problem is sleeping as i just can't find a comfortable position which then makes me depressed (which i have found out is also a symptom of Pelvic congestion !!! No wonder with pain we're all in i would say. Will know more Tues, after been hospital re surgery etc Keep smiling

[beks169]

Well looks like i'm in same position more or less as you I was told @ my appointment that yes i have Pelvic Congestion Syndrome but nothing more they can do, they said my veins were definetly engorged even when i was under anasethic which they shouldn't be ????. They have now referred me to another Dr - Watson, who i amm very lucky to have @ my hospital who is a consultant who specialises in Chronic Pelvic Pain. I think they only did this because i just broke down and said all i want is a good night sleep, i can cope with the pain during the day ( i have a very high pain threshold i have been told) its just the night Hopefull i will get some answers. How long after you been suffering with this ? as i read more than 6 months is classed as Chronic Pelvic Pain

[needingadvice]

ah well im glad they are doing something about it! My gyne keeps telling me that its nothing to worry about and keeps brushing it off like its not even there ;L i got diagnosed in february where i was also diagnosed with endometriosis. I said i keep getting these pelvic pain and hes acting as if thats not the cause of my pain!!! frustrating

[truesark]

I just found this site. I was just diagnosed with PCS in the ER due to severe pelvic pain. I had just had a UTI and they gave me a CT scan and told me that was my diagnosis. I had never heard of it, but they gave me an internet print out and told me to visit my Gyno. I trust him a lot, and he has delivered two of my three kids, and did my tubal after my third. He helped me through heavy periods and cramps in my mid thirties and then I went into quick menopause at age 40. Now at age 49, I get this diagnosis and I make a immediate appt as I was living on Hydrocodone for nearly a week with hardly any relief. Tired and fatigued, due to this and being dizzy for nearly 2 months and under treatment for that with no known cause. My Gyno told me he does not believe in it (PCS) and believes that it is due to other issues/problems, etc, and believed it to be my bowels. Sent me to my Gastro doc, who then insisted on a colonoscopy right after two treatments of antibiotics for my UTI, that left my stomach and digestive tract messed up already. So I do the colonoscopy and was sick before and after for nearly a week with digestive disorders. Now that is getting under control due to a whole food diet, nearly gluten free with digestive aids and probiotics, which I had already taken for awhile. To top it off, I still have stomach acid issues, dizziness and the pelvic pain and all I am told is that I have diverticulosis and to eat high fiber diet, take fiber supplements and add food back into my diet and given an anti-spasm smooth muscle relaxer and come back in the gastro doc in 2 months. I am still tired, fatigued and weak. I am hungry, but do not eat much as I am afraid and yep, I STILL have the pelvic pain, but no one wants to talk about that and brushes me off. I try not to take pain meds for it, as I can't live on them. I am worried it is something more but have had ultrasounds, CT scans, blood work and everything else you can think of and this is all they tell me. Where do go now, what to do? I am a stressed person, but it is no wonder, the doctors make me this way. I am not rich, but do have insurance, but it doesn't cover all this. I have had $1,500 out of pocket, plus co-pays and meds just since the beginning of the year/Jan 2014. At this point, I would given anything to find someone that could help me, even if it cost everything I have, or don't have. I am just sick and tired of being sick and tired. It is hurting me and my family.

[r1970 in reply to truesark]

Your story sounds similar to mine but I'm in the early stage. Was diagnosed with pelvic congestion in the ER followed up with my OBGYN as recommended only to have him say he doesn't believe in it. I've been working with GI specialist and getting no where because they insist that nothing is wrong there. You posted this 3 years ago... have you made any progress and if so how?

[Hidden]

I am in the UK but if you are in the US this website may help veindirectory.org/content/p... . If this links to the home page go to PCS on the right hand side for more information. PCS is a very real condition and has been written about in medical journals but many doctors are unaware of it still. It can cause irritable bowels and bladder as well. It is treatable by a simple proceeedure- Pelvic Vein Embolisation by an Interventional Radiologist.