Pelvic Congestion Syndrome ~ is a hysterectomy effective?

I have had 2 embolizations for pelvic congestion syndrome and for me, it did not help. The last one was about 5 weeks ago. I am now looking into getting a hysto but I cannot find a obgyn who is familiar with pelvic congestion, or even believe it exists. I'm looking for any and all information I can find on this condition and whether or not a hysto is effective long term. My obgyn wants to do a laporoscopic hysto leaving the ovaries. I'm at the point where I am willing to try anything, my pain had gotten completely unbearable and have a hard time taking care of my family due to pain, exhaustion, etc...I am 38 and have 2 small children. Anyone, please ~ your stories, suggestions, anything that might give me some answers.

Thank you!

Madjac

I don't have any experience with pelvic congestion syndrome, but I'm sorry you are hurting and going through this. If you do a HysterSisters/ Google Search (upper right corner of any page here) it will bring up other thread discussing this condition. (Some may be outdated, but hopefully you'll find something helpful.)

With your latest embolization being only 5 weeks ago, does the interventional radiologist feel that if you were to achieve success you would have noticed it by now? Sounds like a very painful and frustrating road you have been on. I'm so sorry.
Perhaps since he had to have seen something to target to treat ... maybe he could help you with a referral and provide documentation and validation about your diagnosis.

Sorry I couldn't be of more help, but I at least wanted to welcome you here and send you a

Beth

madjac ~ I am so sorry that you are suffering so, but maybe my story will help (I'm sorry if it gets too long or if my spelling is off).

I suffered for years without knowing what was going on and had a couple of OBGYN's who thought it was all in my head. Thankfully, I found a new one who thought it could be endometriosis or pevic congestion syndrome and said she'd need to look through the laproscope to confirm either one since they don't show up on scans, which made me immediately feel at ease. We did the exploratory surgery, and was happy to report that there wasn't any endometriosis but there was a small fibroid that they removed and they found that I had hyperplasia. They also visually confirmed pelvic congestion. She explained to me that it is in essence like vericose veins but internally. She showed me the pictures, and to me they looked huge; like the thickness of my pinky finger, but it all started to make sense to me. I have a few vericose veins on my legs and if I press my finger on them it feels as if I'm driving a knife through my leg. Since PCS is trapped behind and between muscles, all the pressure from the blood pooling and stretching the veins can cause intense pain. Of course, the longer you are in pain, the more pain you can feel: it got to the point where I couldn't stand to even be hugged, much less tolerate the smallest speculum made. And forget dating! The pain would escalate if I found myself attracted to someone. The pain also became embarrassing; I couldn't ever get comfortable, and just sitting in a chair for longer than fifteen minutes caused excruciating pain; it got to the point where I was feeling my pulse internally in my pelvis 24/7.

I researched as much as I could find, but there isn't a whole lot out there. Everything I found I discussed with my doctor, who was absolutely wonderful and honest, she gave me all of the options from the least invasive (various birth control pills) to the aggressive: hysterectomy. I asked about some of the newer procedures of other vein health issues such as filling the ballooned areas with the "springs and glue" (I forget the technical term) and she said that can be an option, but not for me as my congested veins were the ones feeding my uterus (and turns out multiple fibroids that were growing inside the muscle wall, another source of pain for me). If they were to try that, they might end up killing the organ, so it seemed logical to me that removing it completely (as well as those veins!) would be the best course of action.

She explained to me that while rare, it is possible that the congestion could return in the veins that lead to the ovaries, the only part of the system left for me. But that was a chance I was willing to take.

For 18 years I had increasing pain; before my hysterectomy I bled every day for a year and a half. I ended up with a fibroid that descended and that I "birthed", warranting a surgery between the diagnostic one and the hysterectomy. I was on straight progesterone for 6 months prior to the surgery to try to cure the hyperplasia (thankfully it worked, sadly my altered state throughout this difficult time drove away some friends; but they just didn't understand).

Today I am pain free, well, a slight pain from the scar tissue in the cuff with extreme exercise, but I know that will go away with time. I have more energy than I've had for years (I actually don't sleep much at all anymore, thus the 2 am reply); I feel like I'm 16 again. Because it was all so slow growing, I didn't have a full grasp on just how much my life had turned to basically existing; all I did was work, eat, sleep, take pain medication, and be in chronic pain. Only now, a year later, am I feeling as if I am understanding just how bad it was, because of all that I am now able to do and enjoy.

I took a long time to heal, but I also didn't push it; I decided to take the full year to myself, to let myself grieve for the loss, to work through the internal healing (there is a lot of cauterization and it can take a long time for the body to reabsorb the tied off veins; again she showed me pictures and I'm thankful that she did, it made me really think twice about what exercising too soon could do as far as damaging the healing process).

But the main thing is, I had PCS, and the hysterectomy and resultant tying off of the veins did resolve the trouble for me. I feel as if I have a new life: or more apropos, I finally feel like this is how I am supposed to feel. I thought to myself today that I feel more like a woman now than I had for the two years leading up to my surgery; and even for years prior.

I wish you all the best in your journey; it is a tough decision and a tough diagnosis; but it is very real and one that can be difficult for others to understand.

If you have any questions I'm happy to help!

Stay strong,

~BrighterDays

Hi,
I know these posts were a long time ago, but this is exactly what I'm looking for!
My vein doctor was happy to discuss pelvic congestion with me but I didn't like the procedure. I belive I need a hysterectomy but my doctor doesn't, as with almost all doctors I have seen, won't even discuss the pelvic congestion. I'm wondering if while he is in there he would be able to see how bad it is and if he would take care of it. I know this is what I have!!!! I have been dealing with this for 7 years and now my pain is so bad that it is 24/7. I'm just want to schedule the hysterectomy and get it over with; but I would be so mad if after I recovered the actual pain wasn't taken care of. The vein in my right leg are protruding and on fire; I can barely even walk. The vein doctor just wants to just keep doing procedures on me. I'm wondering if I just have the hysterectomy I won't have to keep doing vein procedures.
Any help or advice would be greatly appreciated. I don't want to try a new doctor because I have already tried that and now it's 6 months later and still nothing. I also wonder if I have the right ovary removed where that main vein comes in if that will take care of it or does something need to be done with the veins?
Thank you so much

sunsetseeker:

Currently the only way to 100% positively diagnose PCS and endometriosis is to view it visually; while it is possible that it is linked to vein issues elsewhere, and many women with PCS also have leg vein issues, there are many who have leg vein problems and do not have PCS. As difficult as it is to doctor shop, I suggest getting a second or third opinion. In my search I ended up finding our local laparascopic specialist who is also the head of the OBGYN department at the local teaching hospital, and she was great. For me, I don't think PCS would have been diagnosed if I hadn't found the people who were on the forefront of their area, so that's become my main suggestion for anything: research the best doctor in your area, because taking care of yourself is the most important thing.

Also, see if you can find out for certain which veins are problematic; if they end up being the ones that carry blood away from an organ vs. feeding them, etc, because only with a lot of questions can you and your doctor decide if a hysterectomy or just vein work is the best option.

And remember that pain receptors are funny things: sometimes you can remove the source of the problem and phantom pains could linger for awhile.

Best of luck! I hope you find the answers you seek.

Brighter Days,

By just taking out the uterus did that take care of PCS or does something have to be done with veins? I am in so much pain? I was doing hyterectomy because I was bleeding so much, but the last few months I didn't bleed that much. I do have other vein problems in my legs, really bad actually. I can barely walk; but I thought if I just have the hyterectomy it will take care of these problems. The thing is I can no longer wait months and months for my fourth opinion, something needs to be done now. The last 2 months I can't even function. Everything does get worse during my cycle so I figured that is a good sign to just get the uterus and right ovary out. The reason i want right ovary is because all my pain is on right side.
Thank you for writing me back. I feel alone because my husband doesn't understand. He is a great guy but it is just too much and too long. He doesn't get that these decisions can't be made in an instant.

Thanks

Sunsetseeker ~

For me, they said that they removed and tied off the veins and left the "ends" to die off and be reabsorbed. I still have the little vericose veins in my legs and always will unless I decide to have those filled or stripped someday. From what I understand, once they give out like that they won't go back to shape on their own. For me right now though, my leg veins (when they occassionally do hurt) feel like a paper cut in comparison to how the PCS veins felt!

I suggest you ask the vein doctor for their opinion on whether it will stop your leg pain, and what steps would be next if it doesn't.

I may be a weird case, but when my doctor came to visit in the hospital the next day, she said I didn't even look like I had gone through major surgery; and I finally had color! I remarked that she had fixed it to where the blood could get out of my belly and up to my face.

All kidding aside, the pain I had been feeling was gone the second I was coherent after surgery. Sure, I still had the "surgery pains", but those are very different... more superficial in a way and not so much emanating from within; unexplainable I guess, but I just knew. It took a lot longer that 6-8 weeks for me to heal from the surgery pains, but I didn't really care, I knew from growing up that I'm a very slow healer and that it would sort itself out, and even these days I find that I'm so amazed at how bad it had gotten and how absent it is now: the past two days I've been up and down and on my knees, bending and twisting to install a picket fence... I never would have been able to do that two years ago.

It took me a long time to get the courage to do it, but after much discussion, prayer, meditation, listening to myself, etc. I knew for me it was the right thing to do. I guess what I'm saying is right on par with what everyone says: It is a tough decision, but only you and your doctors know what's right for you.

Take care and I hope things get better for you,
BrighterDays

Hello,
Thank you for your story. I'm so happy for you; I can imaging what a relief it must be. It sounds like we have lived similar lives. This gives me a few extra questions to ask the doctor this month. I am going to schedule a procedure for my leg today. Even if this is PCS; I do have some that need to be taken care of. I just hope I'm not making a mistake and it's all just coming from my pelvic area. I wouldn't know what to do with myself if I actually had energy and no pain. What a blessing that would be!!!!!
Take care and enjoy putting up that fence, what a great feeling!
Thank you!

Brighterdays,
I'm sorry if you already stated this, but what kind of hystorectomy did you have? From reading past messages, it seems like the only women who have had relief from PCS were those who have had a hystorectomy with removal of the ovaries. I wondering if I should change OBGYN's (again) but I'm feeling like Sunsetseeker, where I don't want to wait months and months for another opinion and with high hopes, then end up in some other OBGYN's office who doesn't even believe that PCS exists. It's devastating. I asked my current doctor what happens to the veins after a hysto, and he said that he just leaves them. You mentioned that your doctor "tied them off" and the one similar thing that I noticed when reading posting on this subject, was that the women who did have some relief also had their veins tied off...anyway, I'm glad you are feeling better. You mentioned bending and twisting to install a fence - that is great! I dream of the day I can go out and garden again, or just do any physical task...please keep reading this post, I know I will have more questions for you!!! Thanks for all your detailed information...BTW, my doctor also told me to stop reading things off the internet! This site and all the sisters have been way more helpful in trying to figure this all out than all my doctors in two years put together!!!!

Sunsetseeker,
Please keep in touch also. I find it VERY interesting that I have vericose veins on my legs as well. They have been really bad since the pregnancy of my daughter, 4 years ago. Fixing them has been on the backburner, since I wanted to get this pelvic pain in check before I got those fixed, but now I'm wondering if fixing them will take the pressure off my pelvic ares. The veins on my legs don't LOOK really bad, becasue I'm really petite to begin with, but they are extremely painful, I have to wrap them in an ace bandage every day to take the pressure off. Also, interesting, the pain in my vericose veins on my leg has also gotten worse after my uterine embolization. I finally decided there might be a connection to the pain in my leg and pelvic area, and just got an ultrasound on my legs yesterday so they can begin the process of "stripping". Maybe somehow that will help...I will keep you posted...Also, you and I are in the same boat. My husband does not really understand, I think he tried but just can't, especially after hearing my OBGYN say that PCS does not exist, I think now my husband thinks that, too. Too much for him...all he knows is that he hasn't had sex in months...after reading your posts I could have sworn I was reading my own...please keep in touch. I want to hear what happens. Take care, I know what you are going through. The pain just sucks all the energy from your body and takes over.

An afterthought to my previous post, has Lupron shot helped with any PCS symptoms? Or maybe my doctor was offering it to me to do a trial hystorectomy run, which would make more sense. I've heard scary things about the side effects of that shot, especially with me being so moody, hormonal, tired, acne prone, etc, anyway. Sounds like I would become a crazy woman and my family would run away.
Any Lupron stories (good or bad) you would like to share??

Thanks!
madjac (my little honeys)