pelvic congestion syndrome

[crystaljohnston25]

I have pelvic congestion syndrome, and i just meet with a vein specialist today. he told me he could do surgery, but only if i was done having children. i currently only have one child now, but told him i was looking to have another. he told me if i were to get pregnant that my pain would only increase, and could even make things worse. my question is. has anyone who has PCS, been pregnant with it? and if so how much pain were you in? my husband and i really want to make sure we make the right choice before we choose what to do. please comment with anything that can help us! thank you!
  crystal

[vega99]

Hi, my name is Christa. I was diagnosed with pelvic congestion about 3 years ago. I had a procedure where they cut off the blood flow to a few of my veins that were 3 times the size they should have been. I would not recommend anyone to have that done. IT DOESN'T WORK! It was a complete waste of time and money. I was so desperate I would try anything to relieve the pain. The doctor told me that my only option for full relief was to have a total hysterectomy. I had my surgery on July 15,2014. I'm am in so much pain due to surgery. I have been reading about people with my condition that had hysterectomys to help them and it didn't work. I'm very worried that I'm going through all of this horrible postoperative pain for nothing. If a hysterectomy doesn't always work then why didnt my doctor tell me that there was a chance it wont work? Im very scared now that it wont work for me. If I'm going through all of this pain for nothing I'm going to be so upset. Does anyone know what my chances are that the hysterectomy will work? I really need some input or I'm going to worry myself to death!

[LadyPea]

I have pelvic congestion syndrome and was diagnosed about 5 yrs ago.  I've been on the meds have had several procedures done and finally a hysterectomy and seems I am in more pain.  During these yrs, I went to pain management, but those meds I could not do anything sleep and was too medicated.  I don't have children and I'm single so parents and family are my support Thank God.   I have not seen a radiologist, but from what I've read some that have seen one and had the embolization done are still in pain.  Has anyone tried anything natural that eased the pain.  I would appreciate any feedback.  Thanks Denise

[bellagatorgirl]

i to have pcs and i HATE It it is ruining my life. I hate that you have it but im glad to have found someone that knows what im going through. ive read it gets better through pregnancy but worst after the baby is born> but i have 2 and would like to have another but the pain is so sever ever single day im not sure i can make it without a hysterectomy... idk what to do sorry for what  you have to deal with.

[luv2bmomjen]

I cannot believe I just read your post.  I too have PCS!  I was not diagnosed until I had had 3 babies.  That being both good and bad.  Good because I got my three angels, bad because it did indead make my pain SO much worse.  After my third child I started Oxy and have weaned up and down off and on it since he was born in 2007.  I will have chronic pain forever and I cannot have the surgery because it was left undiagnosed and untreated for so long that my entire abdomin is now full of the PCS.  Even a hysterectomy would do me no good because it has spread to my bowel, intestines,etc.  
I have actually never talked with anyone else who has this so I was so happy to see your post.  To answer your question, my pain was not worse during pregnancy.  It was actually much better.  I did still require some pain management but never on a daily basis like now.  Pretty much after my third baby I have not had one day that I don't feel like I am still in labor.  During pregnancy I felt days that I thought were labor as well and they were just the PCS.  
If I were you and you know you want to have another child and are willing and able to have the surgery following I would go for it now.  Take into consideration though that it will make your PCS worse.  You will need the surgery following and to do it sooner rather than later.  That is my advice.  If you are fine with not having more children than by all means don't.  The pain will be worse.  But my pain after my second child was nothing compared to after my third!
Good luck and I will check back with you.  I would love to chat more about this.  
What are they giving you for pain now?  Will you be able to wean from it for the pregnancy?

jennifer

[Tuckamore]

Hi Crystal,

Welcome to the Pain Mangement Forum. I am sorry to hear about your chronic pain the the problems it has brought you.

Please know that you are always welcome on the Pain Mangement Forum. You may have a better response on one of our OB/GYN focused Forums so I encourage you to post there also.

I do not have PCS so I apologize but I cannot offer you any information. Hopefully one of our members will have suggestions or information for you.

Best of Luck to You,
~Tuck