Pelvic Congestion Syndrome

[MSKshelly]

I was recently diagnosed with Pelvic Congestion Syndrome! Does anyone else have this or know of some good resources of information on this.

Since I have had several children, and have also have interstitial cysitits, along with Meduallary Sponge kidney disease, with multiple stones and infection, I spend a lot of time in research to find answers. I am also an IC support group leader and work with other Pelvic Pain organizations, yet find little to nothing about this condition
even there.

When this new diagnosis was made, based on a CT scan which unusually showed the blood backed up in the left ovary, then I was sent sent to a GYN specialist, and a Pelvic Pain Physical therapist, all confirmed the PCS diagnosis, I was shocked at the last of information or support I could find on this condition!  The GYN here just wanted to do a hysterectomy but the specialist suggested this may or may not solve the problem.

My Pelvic Pain PT was the best, and taught me to move the blood flow using my lymph system.  This usually helps a lot, however had a bad bout of constipation that has flared it badly again and I am having trouble getting the pain back under control.  I would really appreciate any information or insight on this that I could find.  Not only for me but to help get the information out to others!!

Thanks for any input or advice!

Shelly

[bellagatorgirl]

Thank you i will check it out. i have had the symptoms since i was 15 but they just found out it was pcs about 2 months ago i also have polys-cystic ovaries which dose not help the situation out. it seems my best bet is a full hysterectomy but im just so nervous about that.  

[Mandy7516]

check out the FB page pelvic congestion. Lots of ideas on there. Good luck! I'd had pcs since age 26 at least and finally ended with coil embolization and hysterectomy. I had lots of other things going on with my pelvic organs tho...

[bellagatorgirl]

im glad this is on here i have not found anyone thant knows what im going through i have pcs and am trying to figure out what by best option is im only 24 but the pain is so intense it affects my whole life i sometimes just dont want to be here anymore and i hate taking pain pills but without them i cant function i dont know what to do every doc ive saw pretty much said to deal with it. I CANT DEAL WITH it..... grr

[dee211980]

my story started when i was a teen i always would had havey periods n it would make me nauseated n i would vomit n the presure was so bad.then when i was 20 i had my son n the pain just got wrose n i had gone to the ob so many times my folder looks bigger then a encylopedia. i got told so many different things. i was told the pain may be because i had a sexually transmitted desease but i didnt have it. i then thought it was in my head n i didnt tell anyone that i was in pain so i kept it my secret but the pain never went away so i had to go back they tried birthcontrol n nothing helped. then got pregnant while trying the pill when i was 22 i had so many pains wit that pregnancy that i ended up haveing her at 8 months they thought i had a ugr pregnancy. so for a few years after i had my second kid the pain was so bad i wouldnt want to have sex n it was puttin stress on my marriage. i went back to the doctor to get help telling them all my symptoms they tried another birth conrol cus they thought that i had endometrois.i first went and the patch.that didnt work  so they   told me i was young n i could try to revese it by having another child so i opt for that i only had two so y not one more so i thought this was my answer to fix my pain so i tried to get pregnant by this time my 2 older kids were 5 n 3 so for 5 yrs no right answers. i got pregnant n i thought this it going to fix me well i was wrong my pains did not go away they just got wrose n i was so bad after i had my 3rd kid that i couldnt sleep in my bed n i couldnt lay flat n i could move.i had 2 todllers n a new born n i was in so much pain that i had to go back to get help. they put me on the depo shot for 6 months and that didnt help wit the pain. it took them 3 more yrs before they realized that i may need to go another rout. in oct 27 2010 i went to the new ob n they gave me a script to go get a mri n i did  in dec of 2010 i got it done. at this time i was off the depo shot for6 months n i hadnt bleed yet but the next month i stared bleeding n i never stoped i would bleed so bad that i wouldnt bleed for only14 days out the month.  the doctors looked at my mri n seen that i had plevic conjestion syndrom. when they told me that they said there was different ways to treat it. i looked into it n read alot about, it well what there was on it anyway. and seen there was a few different ways to help. now my baby is 4 n i was wrose then ever i was fallin from the pain n i couldnt stand n i had to take pain pills to function. so i saw another ob due to the fact that my other doc wasnt on call this guy answered n i told him my pains n i was in tears at this point i needed someone to help me and he said he could help i asked him if he can take it out i felt like my insides were tearing apart inside n it was buring n i couldnt wear jeans or anything tight. he told me he would help to come in and see him. so i did just that. he did a exam n seen that my cevix was low and in the past i was having abnormal  cells called displaysia on my cevix. so he said they can take out my cevex n uterus leave my ovaries so i dont go through menopause. i did that on april18 2011. my recovery is still ongoing its been 8 weeks since i hady sugeryi had some infections after my sugery though.i still have faint pain but no where near the pain i was in. i get up n function better now. the hysterectomy worked i dont have pain wit sex i did it for the fisrt time a few nights ago it it felt good no pain. some dissconfurt still but i can deal with it. i m still healing so i hope in a few more weeks i can be better then i m now.

[diamond961]

I understand what you are going threw. I just found out i had it three days ago after being in pain for  years theY found mines out threw ultra sound. I am still waiting on to see what my options are it affecting everything from my belly button down. I am a stylist I stand all day and its getting harder and harder. Back pains leg pains bladder problems, its hurting me sexually it hurts. So if you find out more can you email me ***@**** and if I find out more I could let you no I understand how you feel
vercell

[clearblueseasplz]

Hi,
Wow, glad I found you all and reading your stories has been supportive.I got the PCS diagnosis this week and had never heard of it, neither had my doctor. I have not had children, 57 yrs old, "DES daughter" (lots of moms took this drug DES espec. in the 50's); I've always had painful and irregular periods. All kinds of things are flying thru my mind now like whether there is a connection between PCS and  the DES designation. I only had one ovary that ever functioned. I've had pelvic and back pain for 2 years now and no one could figure out what it was; they looked at me like I was crazy, a few suggested therapy for depression.I kept going, trying to find answers rather than live with pain meds. It was a neurologist who ordered the MRI that found the PCS condition. I plan to get a 2nd opinion of course but now I'm relieved and NOW depressed at the same time. Has anyone had relief from weight loss and/or diet change?