Aa
Pelvic Congestion Syndrome
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
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
YES! I can tell you my pelvic pain PT, was the most amazing woman! I wish every single woman could go to a PT after they have a child. My youngest was 14 and she could tell me by exam only my whole history etc, including some trauma I suffered from years ago! A good PT can really help heal and find many issue others doctors miss.
Mine also found that my pelvic floor was in a constant state of spams and was able to
relax the muscles so that was not the case!
For my PCS he taught me to move the blood flow using my Lymph system which does help, though some days I still just hve to get off my feet!
Our MOARK IC website has a great article on treatments and self-help options for
vulvadynia and urethra syndrome. If you need or want the link just pm me!
Good luck and keep us posted on how your doing!
Shelly
Mine also found that my pelvic floor was in a constant state of spams and was able to
relax the muscles so that was not the case!
For my PCS he taught me to move the blood flow using my Lymph system which does help, though some days I still just hve to get off my feet!
Our MOARK IC website has a great article on treatments and self-help options for
vulvadynia and urethra syndrome. If you need or want the link just pm me!
Good luck and keep us posted on how your doing!
Shelly
Hello all, I have been diagnosed with PCS by a pelvic pain specialist in Birmingham, Alabama. I have been enduring the pain of Vulvadynia for 7 years. It has been the cause if much marital strife as painful sex is the last thing on my mind. After the birth of my 5 year old it only got worse and I began begin to feel a lot a pelvic floor pressure, especially before menstrual time. After the birth of my 10 month old, things really deteriorated. I began to experience severe pelvic bone pain 2 days after he was born. No I have the trifecta, PCS, Vulvadynia and this awful pelvic bone pain. My doctor has referred me to a physical therapist and I begin on 2/3. He seems quite confident in the physical therapy. Has anyone had any positive experience with phy. therapy and in anyone else battling vulvadynia at the same time?
BWM
BWM
i m 35 yrs old. 3 kids, and have pcs, looked for a doctor for the last 10 yrs. found interventional radiologist at washington university/barnes st. louis, mo, Dr. vandantham. I had coils put in both ovarian veins, helped with groin area pain tremendously. this was 2 years ago. I had no pain after surgery as others say they have. but the veins are still there and under buttocks and believe this is starting to cause problems in my leg veins. I would like to get with all of you through my email ***@****. I also am starting to experience the pain in pelvic area now during sex and after and around menstrual time. I have found a doctor to remove the visual veins in groin area and buttocks due to this syndrome, I go this wednesday the 20th. Please email me, I have written in to the dr. oz show and would like you ladies to go with me, we need to get this disease more known, I am scared. My pinky toe now has a blue tip on it. Lets get together and hit this head on.
Hi Ladies,
So glad to have found this forum, and I am going to join the group on Facebook too. I too am debating whether or not to pursue the Embolization procedure. My Ob/Gyn advised against it, however, I am extremely frustrated and uncomfortable w/ the constant pain. From what I have read, there is no guarentee of full pain relief after Embolization.
I developed PCS after my pregnancy in 2006. I was having a constant dull pain on my lower right side, which was thought to be due to a small cyst that I had developed during the pregnancy. My doctor found the variscosities on my Uterus during the Laprcoscopic procedure to remove the cyst. Since then, the pain is constant and has become a bit worse, especially two days prior to my menstrual cycle. Having no relief from the pain is really wearing me down.
This has become a quality of life issue for me. It would be great to read about some more experiences relating to the Embolization procedure. If I move forward w/ this procedure I will post any additional information.
Thanks,
Kim
So glad to have found this forum, and I am going to join the group on Facebook too. I too am debating whether or not to pursue the Embolization procedure. My Ob/Gyn advised against it, however, I am extremely frustrated and uncomfortable w/ the constant pain. From what I have read, there is no guarentee of full pain relief after Embolization.
I developed PCS after my pregnancy in 2006. I was having a constant dull pain on my lower right side, which was thought to be due to a small cyst that I had developed during the pregnancy. My doctor found the variscosities on my Uterus during the Laprcoscopic procedure to remove the cyst. Since then, the pain is constant and has become a bit worse, especially two days prior to my menstrual cycle. Having no relief from the pain is really wearing me down.
This has become a quality of life issue for me. It would be great to read about some more experiences relating to the Embolization procedure. If I move forward w/ this procedure I will post any additional information.
Thanks,
Kim
Not sure why all of your posts did not come to my daily update till today.
I am also part of the support network on facebook. We still know little but by joining together, we have learned with the other 2 chronic painful hard to treat conditions I live with, that patient support is where you learn the most!!
I have set up an Interstitial Cystitis Pelvic pain support forum here on medhelp too. I had hoped to include the PCS and any links and info to the site here as well. Medhelp has some of the best search engines and are working on adding health pages to the user groups.
http://www.medhelp.org/forums/Interstitial-Cystitis-IC--Pelvic-Pain-Support-Forum/show/412
It is only togther that we can make a difference!
Shelly
I am also part of the support network on facebook. We still know little but by joining together, we have learned with the other 2 chronic painful hard to treat conditions I live with, that patient support is where you learn the most!!
I have set up an Interstitial Cystitis Pelvic pain support forum here on medhelp too. I had hoped to include the PCS and any links and info to the site here as well. Medhelp has some of the best search engines and are working on adding health pages to the user groups.
http://www.medhelp.org/forums/Interstitial-Cystitis-IC--Pelvic-Pain-Support-Forum/show/412
It is only togther that we can make a difference!
Shelly
Mander,
I had the embolization done 11/24, its the 16th of December now. I had coils and a sclerosing agent placed. As of today I am still taking Ibuprofen and Lortab around the clock. I am still having pain 3 weeks out which, by all of the studies I have found is not abnormal. (I have resorted to internet info as, 2 doctors have told me that they do not know a whole lot about PCS and have not bothered to learn about it either) There is very limited info with small study groups as this is a horribly underdiagnosed condition.
My pain is equal to the pain I had before the procedure. I see another gyno today for another opinion on my pain as the last doc I have seen in my clinic is not convinced that PCS is causing the pain and wants me to go to another gyno...although she admittedly does not know anything about it.
My resources are limited in my area for this condition, I travelled 100 miles one-way to see the IR who did my embolization after calling on a friend who is a physician who found this man for me.
I was told I would have no pain at all, in fact; I could get up, go to lunch and go spend some money in his town on dismissal, am supposed to call "in a month or two" to let them know how I am feeling. I hurt so bad as soon as I got out of bed to urinate before going home I was actually in tears. I was sent home with no pain medication and was told 24 hours after the procedure by the IR's nurse to call my own doctor to get pain relief. I have been informed by other women that they were kept over night for pain control after the procedure.
It sounds like you are in a much better area to have this done, with a doc you can get a hold of if needed for further questions and follow up. I would address pain control for after the procedure and make sure the radiologist will be in contact with your physician to coordinate your care post-procedure if you go ahead with it.
I have read that it can take months for the full benefit of the procedure and there are varying opinions as to what kind of follow up to do to assess the effectiveness of the procedure. If you have the procedure done, make a list of your questions for someone to ask the doctor afterwards so that you have all the answers you need.
We have a support group on facebook also, Pelvic Congestion Syndrome Support. There are others on here who have had a lot of different experiences and some other medical/gyno issues who may have more information than I can provide. Good luck to you with this, its a long, frustrating road!
I had the embolization done 11/24, its the 16th of December now. I had coils and a sclerosing agent placed. As of today I am still taking Ibuprofen and Lortab around the clock. I am still having pain 3 weeks out which, by all of the studies I have found is not abnormal. (I have resorted to internet info as, 2 doctors have told me that they do not know a whole lot about PCS and have not bothered to learn about it either) There is very limited info with small study groups as this is a horribly underdiagnosed condition.
My pain is equal to the pain I had before the procedure. I see another gyno today for another opinion on my pain as the last doc I have seen in my clinic is not convinced that PCS is causing the pain and wants me to go to another gyno...although she admittedly does not know anything about it.
My resources are limited in my area for this condition, I travelled 100 miles one-way to see the IR who did my embolization after calling on a friend who is a physician who found this man for me.
I was told I would have no pain at all, in fact; I could get up, go to lunch and go spend some money in his town on dismissal, am supposed to call "in a month or two" to let them know how I am feeling. I hurt so bad as soon as I got out of bed to urinate before going home I was actually in tears. I was sent home with no pain medication and was told 24 hours after the procedure by the IR's nurse to call my own doctor to get pain relief. I have been informed by other women that they were kept over night for pain control after the procedure.
It sounds like you are in a much better area to have this done, with a doc you can get a hold of if needed for further questions and follow up. I would address pain control for after the procedure and make sure the radiologist will be in contact with your physician to coordinate your care post-procedure if you go ahead with it.
I have read that it can take months for the full benefit of the procedure and there are varying opinions as to what kind of follow up to do to assess the effectiveness of the procedure. If you have the procedure done, make a list of your questions for someone to ask the doctor afterwards so that you have all the answers you need.
We have a support group on facebook also, Pelvic Congestion Syndrome Support. There are others on here who have had a lot of different experiences and some other medical/gyno issues who may have more information than I can provide. Good luck to you with this, its a long, frustrating road!
You are reading content posted in the Women's Health Community
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
Normal vaginal discharge varies in color, smell, texture and amount.
Bumps in the genital area might be STDs, but are usually not serious.
Chlamydia, an STI, often has no symptoms, but must be treated.
From skin changes to weight loss to unusual bleeding, here are 15 cancer warning signs that women tend to ignore.
