Pelvic Congestion Syndrome

I recently was diagosed with this too. i have been dealing with vericose veins pelvic and legs for 18yrs................and im 35! I have been through a series of things. First of all..........very hard to find a well educated doctor to help you............sometimes you have to go to several, too many think this is a "cosmetic" issue and it is far from that!!! I just had a venogram 2 days ago, i have pelvic vericose veins and my ovarian vein......was running downward instead of towards my heart. My dr coiled the vein. I have to have many other procedure's done. This is a very frusterating thing to deal with, only because even if you have surgery and they remove the veins...........the problem is that the blood can re-route itself and this could be an ongoing issue forever!!! I can only hope that this procedure will relieve me of some pain!

Hello Everyone. I am new to this forum so I hope you don't mind me writing. I can really use some help from people who know something about what I am going through. I am 27 years old and I cannot remember a painless period. I have been reading some of the posts in here and can really relate. I have been made to feel for the longest time that I am making symptoms up for attention. I can't even tell you how many jobs I have lost because I don't know what to tell my boss besides "I feel sick". My good days consist of not being able to walk and only go downhill from there. Last year I had a laparoscopy done and was told "you have varicose veins on you uterus. I don't know how to treat this so you need to find someone else." The only other Dr I found was an hour away in the next state and all he did was put me on birth control pill constantly (no period break) and pain pills. It wasn't until I had my Gaul bladder removed and was put on Vicodin that I accidentally found a pain pill that helped. I have been married for two years and no children. Dr's in the past tell me that having children could stop the pain but I don't know. All I hear with this problem is children cause or increase risk. I am very scared about getting pregnant, if I would put my child’s life or my own at risk. Also I cannot stand the BCP anymore. They make me depresses and angry all the time not to mention the physical problems; the pain did lesson but did not go away, migraines dizziness and passing out were constant and the weight gain. I took myself off them in Jan (I lost my Medical Ins and cannot pay for them anymore) and not including that time of the month have been doing better. I don't think I want to go back on them. I am still using Vicodin for the pain and worry that I may become addicted. I hear of other types of treatments but I cannot find a Dr that can help me with this. I also really don't want to start over again. Whenever I meet a new Dr they want to put be back on the pill trial again for 6 months. Will they ever learn that the pills just are not working? I am in lower PA outside of Philadelphia. If you know of a Dr in this area, please let me know. Also, I would like to hear from the woman who had this, your thoughts about children for me. Adoption is definitely an option but I feel strange that my heart as a woman is not into carrying my own baby. Any suggestions would be helpful. Thanks Karen

sounds good, I will look for personal emails, it has been helpful mentally talking to someone who can actually relate to the exact same problem. I have an appt with the pain clinic on MOnday, I have never been to one so I will have to see how it goes. I will check out your dr, thanks, keep in touch. Dianne

I can relate to your pain. I suffer everyday. I had the surgery from Dr Venbrux an interventional radiologist who was very familiar with PC. He stated that my condition was one of the rarest he had seen in his 19 yrs. I had a hysterectomy in June 04 but my gyn dr left my left ovary. The gyn dr said that I had an engorged vein on the left side so he embolized it. Three months later I am in severe pain (since Oct 04)my gyn dr said he couldnt do anything else for me because he already did what he knows. No one in my area of WV has heard of this condition. I found Dr Venbrux on the internet. He told me that the entire left side was so engorged and tangled around my pelvic wall and ovary and went around in a circle and grabbed the right side of the pelvic wall veins pulling them to the left side causing my right side pain. He stated mine should have been done in 2 surgeries but since I had to travel 2 hrs he did it in one surgery and also said it could take up to 6 months before I will feel different. I dont feel different after the embolization. I was awake partially during the procedure and heard them saying more contrast and kept feeling him stuffing something in my leg/groin area. I dont know what to do, my gyn dr doesnt want to deal with giving me pain meds, I am only on hydrocodone and it helps for about 1 hr them stops, he thinks I can take over the counter meds, I am not one to take meds,hate taking pills at all but this condition had gotten me on prozac,xanax,clonopin,zypan(for nausea) and pain meds if I can get my dr to prescribe them. I see him tomorrow and I am going to take my husband with me for support and ask him for a referral to pain management if needed. My leg veins have bulged out tremendously. I work full time and mother of 2 boys 10 and 13, I want my life back and the drs dont understand it. If you get satisfaction with your dr can you let me know? I might need someone else to help. Thanks for listening. I pray for you each night as I do for other people who suffer with this condition. I have an identical twin sister who started going through the same thing in her 20's and think she was just never diagnosed with PC, she now had intersticial cysticitis of the bladder and on SSA disability. I work for SSA and can relate alot to disabled people. Anyway stay in touch and if you want to personally email me instead of posting, DMKane4@aol.com Dianne

I am so sorry to hear that your condition has gotten worse. Try to hang in there and let me know of what they decide to do. My pain feels the same, hurts so bad but no one, drs for one are familiar enough with this condition they just think you want to be a drug addict. I go to my follow up appt Monday with my gyn and see if he can refer me to pain management because the loratab just doesnt help. keep me posted and stay in touch, glad to have a friend to talk to, I think it helps to have someone to discuss what you are going through. My prayers are with you. Dianne

Good luck with your appt, let me know how it goes. i am still experiencing alot of pain and wonder if it will ever go away. dr venbrux at george washington university hospital in washington dc was the one who did my procedure. i will keep you posted. dianne

Just wanted to let you know that my surgery went through ok. The surgeon said I was a rare case that my left side veins were so tangled and went in a circle to the right side pulling on it causing the pain. He told me it could take up to 6 months for me to see relief. I was upset to hear that. I am back to work and go talk to my regular doctor on Monday to discuss pain management. I hope these dont come back.

I will definately keep you informed, I think these forums are very supportive to each other and will let you know how it turns out. Thanks for your messages and prayers. Dianne

Thanks for the good luck. I am in severe pain and really hope this procedure works. The dr says it helps 70-90% of the women but I have a difficult time with my regular doctors controlling my pain, its like they dont believe me.

I was reading your situation. I am in severe pain and getting ready to go have the embolization done next week. I have severe pelvic variosities. I am worried that it will come back too. Have you found a solution. This pain is horrible and most doctors dont understand.