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Pelvic Congestion Syndrome?
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mt94127 posted:
Hi-

I have had unexplained pelvic pain since 2004, which has gotten worse in the last year, after my third child was born.

Here are some of my symptoms:

-Dull, heavy pain in my lower pelvis on both side and alternating sides -like a bowling ball needs to fall out. -Shooting pain in vaginal opening, possibly cervix-like a grapefruit needs to come out of there! -Bad back pain in both sides that gets worse as the day progresses. -Shooting pain down legs and out sides of hips -Pain after intercourse. -The most recent new pain is when my bladder is full, it makes the pelvic pain very bad and is relieved about ten minutes after I empty it. -Had appendix removed when I was 3 months pregnant with my second child-the appendix was evaluated and was not the problem. -Very irregular menstrual cycles and very painful periods. -The week before my period starts is very bad as well, often having to stay in bed-not easy for me. -My third pregnancy was very difficult and my uterus measured larger than it should. -When I work out, the pelvic pain gets very bad and after a week of working out, I can not walk at the end of the day the pain is so bad. -I am 30 years old and eat healthy and am a healthy low weight for my height. I have lost all pregnancy weight gain each time and weigh less than I did before having kids.

-My OBGYN has done exams, tests, and laproscopy but none for PCS I found PCS while researching on line last week. All of the symptoms match up with what I have been experiencing. When I mentioned it to him last week, he said he didn't see it on the laproscopy and he thinks the test for it is too invasive and even if it was positive he would remove my uterus. In my research, I found that laproscopy was not a reliable way of diagnosing PCS and removal of the uterus does not relieve the symptoms of PCS.

-I have switched doctors and am tryign to get a second opinion and the appropriate test for PCS, which I know involves goign to a interventional radiologist. -If anyone has info about this or something that will help let me know. -Having unexplained pain in your pelvis and havign three small children(5, 4, and 19 mos) is very hard for me to deal with. Most of the time I just keep going. I do not take and can not take pain pills three kids but even advil doesnt help. What I have found that helps the pain is if I lay down even for 20 mins. during the day, it can lesson the pain a little bit.

Thanks!
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monkeybane responded:
Hi mt -

I have just recently been diagnosed with pelvic congestion syndrome. I didn't even know that was my problem until they found "prominent & quite vascular" veins on an MRI that I had done for right hip pain. It was a diagnosis that I wasn't expecting. I was referred to an OB, only after my midwife told me that she didn't think that it was a big deal (I truly believe that it is) I had an ultrasound to confirm the diagnosis, which it has been, but now my nurse practitioner is telling me that it is somewhat of a catchall term. I believe that this is because there are women out there that have prominent vessels as well that have no problems or pain and are asymptomatic. I also personally believe that the reason that having a hysterectomy doesn't help or only helps to a certain degree is because they are only removing part of the problem. PCS consists of the varicose veins along the pelvic wall and possibly even down into your legs. I have had unexplained severe leg pain since the birth of my twins and have been to 9 different types of doctors to try and figure out why and what to do about it. I believe that I have finally found the source of my leg pain, and I could cry. Don't give up - talking to an interventional radiologist is the perfect step to take. They will probably do the ultrasound and maybe even and MRI to rule out everything else and get you that solid diagnosis. Don't let them tell you that the only thing they can do is take your uterus - they are telling me that, too. I am 27 years old, and though I have four kids and have had my tubal, I am not ready to lose that part of my body yet. Talk to you radiologist about embolization - my doctors haven't heard of it (I live in Fargo, ND) but I think I may have found somebody that has. Good luck, rest when you can, and have faith.
 
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DukeDaisy responded:
Hello, I was diagnosed today because of the MRI I had on my hip. I have had hip pain for two years, since my first pregancy so my ortho doc thought I had a hip joint tear, which was not the case according to this MRI. Is an interventional radiologist the way to go if I have PCS? What about a vascular surgeon? I have had sharp chest pains for 4 months now (I am a healthy, athletic 32 year old with 2 recent pregnancies) so I contacted my IM doctor who had both EKG and ECHO done on my heart finding that my heart was one of the healthiest hearts he had ever seen. So there is nothig wrong with the heart, but now I am wondering if this healthy heart of mine is getting enough oxygenated blood, since the veins do not seem to work properly? Is that why I am having these chest pains? I also had post partum hemorrhage from my uterus immediately after my second delivery, I also wonder if this was a result of "bad" veins? Anyone else with similar issues?? DD
 
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DukeDaisy responded:
Hi there! I was diagnosed yesterday with PCS as well , so I am kind of a rookie on this topic, so I am wondering if you have found out any more information what to do next? I also have chest pains quite often, even though I know my heart is extremely healthy according to a recent EKG and an ECHO. I am 32 YO athletic woman with two kids, 10 months and 2 years old. Do you have chest pains also? After reading about PCS I found that the blood is pooling instead of going up to the heart, I thought that might be why the chest pain? Let me know how things go and if there is something I should be aware of or ask the doctor.

DD
 
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TiniG responded:
I too have pelvic congestion syndrome and my gyn has recommended a hysterectomy. However, I think I may try an interventional radiologist first. Do any of you have horrible trapped gas that is not relieved by anything? My pain is always on my right ovary and is so bad at night that it keeps me awake. I too, am very healthy and have had lots of chest pain. I think my health is deteoriating though, b/c every time I try to walk or jog for excercise, I am in pain for days afterward. I wonder if the blood can just pool in there and stay - and then somehow affect your bowels, thus my horrible gas. Any advice would be appreciated!

Thanks!
 
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BlondieDC297 responded:
Hi I recently had a CT scan after getting salmonella poisioning. They were checking for damage to my kidneys and found that in addition to the kidney stones they suspected, I also had what the doctor described as varicose veins all over my pelvis. I was very confused, and since I was in the ER they didn't really go over anything with me, just told me to talk to my ob/gyn. I googled varicose veins in pelvis and found that it could be Pelvic Congestion Syndrome. All the symptoms are very similar to what I have been experiencing since my 3rd child was born. I thought it was just my IUD. I never had one and figured it just takes some getting used to and all the aches and pains would eventually go away. I'm 24, 5'8 and 125. I'm not overweight, I don't know what caused this. I'm going to be calling my doctor tomorrow. I'm concerned because from what I read this never goes away on its own and always needs some sort of intervention or treatment. I'm wondering if anyone else out there has gone through it and what there story may be. Also is this common? Do women have this and it gets dismissed by either their doctors or themselves as something else? I'm asking a lot, but I am really confused and a bit concerned.

Thank you! DC
 
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Mich2009 responded:
I too have been diagnosed with Pelvic Congestion Syndrome. I had pain on my right side that started near my rib cage and worked down to my hip and sometimes in my back. My GYN did a laporoscopy and took pictures of the veins. She put me on Provera 10 mg. I feel a lot better. I don't feel bloated, I am able to pass gas and I don't feel like I am 9 months pregnant. The pain has subsided and I feel healthier. The night sweats and mild mood swings are annoying, but it beats the pain. And to answer some other questions I seen on here, I had my uterous taken out prior to having these issues. The only other thing they suggested was to take the ovaries and they will not do that unless it is neccessary. They do not want me to go into early menopause. So a hysterectomy may not be the answer.
 
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deneen615 responded:
Hi ladies,

I have also been diagnosed with PCS over a year ago and have already had an embolization and a hysterectomy. I have a pretty extensive story and belong to several PCS support groups so I now just have my story saved so I can just copy and paste it to those that would like to read it and who may benefit from it. If you would like to read it or ask me any questions about the embolization you may contact me at rndeneen@yahoo.com. I have posted on WebMd before and have met many wonderful women that unfortunately are going thru the same thing and now we all support each other. Several of us have a support group on facebook if you are members. Just FYI.

Feel free to contact me and good luck. rndeneen
 
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Praize2 replied to deneen615's response:
I too have been diagnosed with PCS. The prescribed pain meds are not working. I have been in and out of the hospital. One ovary was removed hoping to alleviate the pressure on the side that hurting the worse. It did now work. Another procedure was done and it does not seem to be working. I am unable to work, not married and no children. Tell me about the emobolization. From all the information i have read nothing seems like a guarantee. I want to know can anyone work with PCS? I tried and ended up using all of my time. Please share some info. Thanks Praize2
 
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ChinMed responded:
From a Chinese medical perspective PCS should be very effectively treated with both acupuncture and Chinese herbs.
We classify pelvic pain either as a blood deficiency, yin deficiency, and/or blood stasis (varicosities are classified this way). Specific Chinese herbal formulas as well as acupuncture points can be used to treat this effectively in most cases. I have specialized in Chinese medical women's health for over 20 yrs and have seen good results in most situations. To find a certified and licensed practitioner near you please go to www.nccaom.org, then find a practitioner. You will want someone who has extensive experience using herbs as well. This will cut down the cost of overall care.


 
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Arrowwind replied to ChinMed's response:
Thanks ChinMed for reminding me of chinese medicine for this. Chinese herbs has had a good rep for treating vericose veins... I am very concerned about any surgery for this procedure. You cannot replace those veins. Are not your veins needed? I will try a classical homeopath first as I have seen several cases of vericose veins and hemorrhoids cured with this type of treatment. I've had great success with homeopathy for a variety of things over the years. If this fails then I will be looking for a chinese herbalist..as I know for a fact that herbs can have a profound effect on the vascular system. So far my pain is not terribly severe so I will explore alternative methods... even if it were severe it seems that conventional medicine cannot offer a whole lot. I want to be free of this.
 
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goldfan responded:
Hello,
I so feel your pain. I have dealt with similar issues for about 2 1/2 years. I have had numerous tests done and every one but one came back normal. The test that found the PCS is an MRA it reads the veins and arteries in the body.
Best of luck
 
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mission12 responded:
I know this was a while back. And I hope that you are still alerted to comments on this. I was wondering if you have found any solutions.
 
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sewhappy5 replied to mission12's response:
After 14 months of horrible pain I was diagnosed with PCS. Between my primary physician and an interventional radiologist I underwent a venogram with embolization. A partially blocked vein from the right ovary and five twisted veins were discovered. After a month I feel 90% better. So anyone that is suffering don't give up and seek the medical help you need.
 
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Sharthirkill responded:
I realize this was posted yrs ago, but when I read it I felt overwhelmed with relieve. I have been having the exact same symtoms for almost two yrs. I just went to my sixth doctor trying to find answers. I was orignally diagnosed with PCOS and when I still had pain they did a laproscopy to see if I had endometriosis and ended up diagnosing me with PCS. Between the two some days are a real struggle to get through. I have two children, in the Air Force Reserve and a full time student. I get very frustrated when I feel like I can't keep up with my own life because of the pain and discomfort I constantly feel. I have really stuggled with exercise and with the PCOS I have been slowly gaining weight. I can't keep up with the regular exercise I used to do in order to be ready for my physical assessments for the military. I was never a great runner to begin with so I have to really push myself to get were I need to be and I can't get to that level of intense exercise on enough of a daily basis without like you said by the end of the week being in so much pain I can't function. The Dr I went to before this last one said that PCOS and PCS are catch all terms and that I was just severely depressed and needed to deal with that to feel better. He went as far to ask if my husband is helping me around the house. I wanted to sarcastically say no and his lack of help makes my uterus hurt. In that case a lot more women would be suffering. The doctor before that saud there isn't anything we can do until I am done having children. I am remarried and my husband doesn't have children of his own and would like one. I went off birth control so we can try but in the mean time that Dr told me I will just have to take over the counter pain relievers, which by the way don't do squat, and he also said I will just have to find a balance between the pain I can tolerate and what I can do. Anyway I have been looking online for answers and was starting to feel like maybe it was more in my head and me being a big baby until I saw all these post from other women in the same shoes. I wanted to post so that when other women who are having issues find this thread I will be one more person that knows what they are going through and how difficult it is when everyday you are in pain and you can't be the person and live the life you want. I hope someday they have better answers for how to treat this. Good Luck and don't give up.


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