Pelvic Congestion Syndrome

[MSKshelly]

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

[MSKshelly]

Wow I can not believe how quickly threads slip out of focus on this forum....,
can anyone help me?

Shelly

[anjiell]

I also was diagnoses with pcs and after a couple of specialist that told me to deal with it i found a vascular /interventional radiologist doctor who embolizes the dilated veins in the pelvis.I just have had the procedure and am still healing. Look for a vascular interventional radiologist to see if they can help with this.

[RosemarieHP]

Hi Shelly,

I had the embolization for ovarian varices done in July 2009.
The radiologist who did this procedure told me that it does not always work, but it could be done again
Two months later I am having symptoms again, and need to go back and see what my next options are.
Am looking for a support group and would also like to know what you did for the pain, you said something about using your lymph system, could you please explain.
Looking forward to hearing from you.
You can also reach me at ***@****
Rosemarie

[mandermills]

I have PCS and have seen an interventional radiologist and am trying to decide if I want to try embolization---I see some of you have had this done, can you tell me if you think it helped? And those who did not thin it helped, then what?

[Mandy7516]

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!

[MSKshelly]

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

[KimPCS]

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

[angelbusch]

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.

[BWM77]

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    

[MSKshelly]

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

[spirit5]

I am 24 I have two kids. I've been going through 3 and a half years of bleeding for months at a time up to 6 months be exact. I had laproscopic surgery and found out I had a bad case of congestive pelvic sydrome. I can't take the pain and havnt found a good treatmen. I've felt a pop were most my pain has been and it started burning the pain was so bad it had me screaming and made me fall out in the floor. Would that mean a swollen vessel popped? I'm sao confused n need help.

[MSKshelly]

Well for me the only time one popped, my husband that I am now separated from jammed the breaks on HARD, several times to get the attention of the kids. This resulted in a lot of pain and 3 weeks of constant bleeding for me.  I would assume if the veins are so filled with blood that they can not handle it they will pop too.  I would imagine you would be a good candidate for a hysterectomy, with embolization.  My understanding is getting a hysterectomy does not always take care of the pain issues, unless the veins going into the uterus are treated at the same time.

What has everyone else heard or experience on this?

[livnlrn]

I have been diagnosed with PCS and scheduled to do a hystorctomy next month.  I am trying to get a 2nd opinion before I do.

My main complaint is: NAUSEA!   I do have pain in the groin but not as bad as most people do.

May '09 I had my gall bladder removed because of the nausea and showed it wasnt working anyway.

I have been nautious ever since.  I seem to connect nausea and periods.  I am alway sick, and constipated right before I start.

Does any have NAUSEA with PCS?

[jess601]

i was finally diagnosed with pcs in december after suffering for almost 6 years of doctors telling me i was crazy.my doctor when she finally figured it out because of and ultra sound didnt know a thing about it so i had to do my own research and find my own spcialist which i did and hes awsome.in march i just had to of my upper veins embolized and it has made a significant change i still have to lower ones to be done but i dont know if i need it as of yet since there has been such a change and yes i did have nausea and the constipation and it was doing a lot better until my recent kidney problems i wish u the best of luck

[MSKshelly]

I thought my nausea was related to my MSK and kidney issues never connected it to
PCS.

Glad your doing so much better Jess!  What is up with the kidneys?

Shelly

[jess601]

i was told 3 years ago when i was pregnant with my second child that i have msk and they left it at that. well just about two months ago i got kidney stones and ever since ive passed the stone my kindneys still hurt and im constantly neaseated again i went for a ct scan and it showed i still have stones in my kidney but they say there is no reason to why i still hurt im having a hard time with the pain and no help from the doctors and everything ive read on msk so far has said nothing to why my kidneys still hurt

[Shaunon]

HI Everyone,

My pain started July 16th, 2010. I ran to obgyn who told me my pap was clear and I had infection. A week later I had my period and was extreme pain. On my 36th birthday, August 15th, 2010 I was in the ER with the pain. The Dr. there finally did a CT. I was cleared and sent home. The next day I got call that I had PCS. I was referred to my OBGYN again who told me there was no such thing. I went to my regular for help who said he didnt think it was vascular without seeing the report. I finally did research on my own ask my regular doc to refer to an Interventional Radiologist and he wouldnt do it. I finally had to contact the Radiologist myself and ask to look at my CT and give me his opinion. The man is hero, he called my regular got my referral. I am now just waiting for the Embolism he said would help. If not, I read having a bilateral oopherectemy helps 56% of women with the condition. The past few months have been a nightmare to me. My doctors told me it was stress and would correct itself and put me on antidepressants. I wish they would have known more and had helped in the beginning. In end, I think we have to be our own advocates and find someone who will listen!!!

[livnlrn]

I was diagnosed with PCS as previously posted,  BUT  when I had my hysterectomy on Aug 12th,  my doc told me I didnt have it, but had Adenenmyosis.

I was also told that you really cannot see PCS on an MRI/Ultrasound.  They have to visually see it.

I took antidepressants for nothing!!  All my symptoms are now GONE!!

[Shaunon]

HI,

I may have pcs, what is a PT?

Thank you,

Shaunon

[livnlrn]

I would assume youre meaning PT  as Physical Therapist...?

[happyhorse]

i was diagnosed with pcs in july this year and was so elieved to finally put a name to the pain i have been suffering since my little boy was born. i have three kids ages 9,5,4 and had v bad vv durning the second and third pregnancies. the viens are mainly from the vulva down the back of my left leg. having gone to a vien specialist with preg. 3 he told me he  had never seen such a bad case! the pain i experienced was horrific and sex was completely off the bboks - although occ. i gave on but my husband was in charge of house and kids the whole of the next day! after giving birth though the veins became less prominent and although still there are not as bad.

about a year ago i started getting v bad back pain on my left side esp. when i was menstruating. but i also got severe ovulating pains and ym viens would swell durning both times. i also have nausea when i ovulate - i noted someone else on the forum did.  having had an mri recently i was diagnosed with pcs with prominent varicose viens on my left ovary.

i have been told about the coil procedure and that this would be my best option. my question is whether any of you have had a successful go of the procedure and then went onto have another baby? pregnancy for me is terribly painful but when someone tells me its not such a good idea it make me want to have another!

[BDRaper]

I was Diagnosed with PCS last week after 10 plus years of symptoms.
My complaints were pain, bleeding, nausea, faintness, fatigue, very enlarged abdomen, And the latest was slow pulse and heart palpitations.  I have been going to my Dr. for years and he told me I had a "bug". So I went to a specialist and my options were at this point, Hysterectomy. That's it! I am 35 and have 3 children and want no more, so it's not a big deal to have one. But I wish all of you the best of luck, and don't just be passified like I was, Go see ten Dr's if you have to.
I have missed out on a lot in the last few years due to not being able to function with the pain, Don't let it happen to you! Good luck and best wishes!

[clearblueseasplz]

Hi,
Wow, glad I found you all and reading your stories has been supportive.I got the PCS diagnosis this week and had never heard of it, neither had my doctor. I have not had children, 57 yrs old, "DES daughter" (lots of moms took this drug DES espec. in the 50's); I've always had painful and irregular periods. All kinds of things are flying thru my mind now like whether there is a connection between PCS and  the DES designation. I only had one ovary that ever functioned. I've had pelvic and back pain for 2 years now and no one could figure out what it was; they looked at me like I was crazy, a few suggested therapy for depression.I kept going, trying to find answers rather than live with pain meds. It was a neurologist who ordered the MRI that found the PCS condition. I plan to get a 2nd opinion of course but now I'm relieved and NOW depressed at the same time. Has anyone had relief from weight loss and/or diet change?

[diamond961]

I understand what you are going threw. I just found out i had it three days ago after being in pain for  years theY found mines out threw ultra sound. I am still waiting on to see what my options are it affecting everything from my belly button down. I am a stylist I stand all day and its getting harder and harder. Back pains leg pains bladder problems, its hurting me sexually it hurts. So if you find out more can you email me ***@**** and if I find out more I could let you no I understand how you feel
vercell