Pelvic Congestion Syndrome (2012)

Hello everyone, I'm stopping in to say hi and ask a few questions about a possible hysterectomy looming in my future...Here's my story

I'm a healthy active 32 year old married woman. I'm mom to 3 children of my own and stepmother to 2 more daughters. About 2 months ago, I started getting constant dull pain on the left side of my pelvic region, about directly over my left ovary, it was dull and really didn't effect my day to day activities at work or home so i ignored it like i do most random pains waiting for it to go away. Well, the pain did not go away, I noticed it really was annoying after sex and at the end of my shifts, I started getting nauseated and lightheaded at work as the pain intensified and then finally, One Monday, my period started a few days late, and I started having extreme stabbing pain in my lower left pelvic area, and started uncontrollably throwing up and could not stand more than 10-15 mins without being doubled over in pain. I went to the local doctor on call at my office and she basically felt my stomach and told me to go home and take ibuprophen...even though there was no way I could keep it down...next day i called an ob/gyn my mother referred me to, and made an appointment. I had moved and my regular OB/GYN is now hours away from where I live so I decided to visit one closer.

So at my GYN visit, he informs me he thinks its an ovarian cyst and has me go in for an ultrasound, and gives me some pain medication and medication for nausea and vomiting. And I go home after being told that if its a cyst it will probably go away on its own and if problems get worse, call. So i go home, try to resume my normal life as much as possible and got the nausea under control. I go to work that Sunday, and I was uselss!! I am a cashier at a department/grocery store so i am constantly on my feet, within 20 mins i was doubled over again, anytime i lifted on anything heavier like a case of pop or huge bag of dogfood, my left side felt like it was going to rip out on me. The pain just got worse and worse, my husband came home from work for lunch one day to find me on the couch and in tears from the pain. So, I call the GYN to ask about it, he said the Ultrasound was normal, but if the pain is getting worse to go to the ER. So to the ER we went, and everything was normal...no emergency, at this point the GYN now says that he does not think it is a gynecological issue and i need to go back to my primary doctor.

So, now I go back to my primary doctor, (not the on call doc like the first visit, my regular doctor) He does all the normal tests and they come out normal, and sends me for a CT scan with ingested and intravenious contrast. After a week, I finally get a phone call with results...during the week waiting, the pain was getting worse...adding pressure and fullness to the pelvic area, and going to the restroom was turning into a painful frustrating mess...The results came back as enlarged left ovary with pelvic congestion syndrome with some of the veins...and the doctor places me on Provera. Doc also puts me on leave from work so we can get this all taken care of.

Provera, did nothing but make me feel bloated and start throwing up again...so I thought...after 2 weeks I go back to the doc, I was now having issues with constipation, pain still causing major issues. Find out, primary doc has no clue how to deal with this, he isn't familar with it and is researching it. Informs me that we need to eliminate anything that is causing the issues before it can be a full diagnosis...he puts me on some meds to make me have a bowel movement, and says he'd like me visit my GYN again, and have them work together. And sends me with a copy of the CT scan and his office notes for the GYN....

My next visit with the GYN, included the following, him telling me that basically my ct scan was normal...even though i read the report and did my own research and symtoms are matching up... He then takes me off the Provera, and schedules me for a laparaoscopy and tells me he'll send this to my doc.

I didn't realize that the provera was doing anything till i went off it...pressure immediately increased, it was obvious after the water weight dropped I had lost a lot of weight, and the pain was a lot worse...though it never actually went away on the provera. So we go in for the laparascopy with hopes that today will be the day that this is done... Oh, No it was the worse experience i ever had... GYN FORGOT my surgery....he had to be hunted down, and my surgery was moved back 3 hours, and then he was still 45 mins late...i never saw him beforehand, during or after the surgery. He only spoke to my husband. Now, when i went in they took a urine sample...i informed the nurse that i was currently on my period and there was blood in the urine...she said that wouldn't be a problem...but the GYN informed my husband that my uterus and left ovary was enlarged but he didn't think that was causing my pain cause he considered it normal, and since my period should be starting soon I should feel better, but there was blood in my urine so he was sure i had a kidney stone and wanted that test done. After, recovery i could see my husband was NOT happy, and i was told what he said and I was like ummm...didn't he read the chart...we decided not to do the test he wanted and visit with the primary doc.

Next day with my primary doc, first he had not received any info from the GYN, and he took a blood and urine test which came up normal...which was no shock...but now primary doc wants a colonoscopy to be sure nothing is causing problems with my colon etc...and if that comes up normal we will discuss surgical methods of dealing with the congestion.

So, now i'm waiting for this test to be scheduled... Doc said after that hysterectomy or embolization are options....however, I live in a small town hours away from anyone that will do an embolization, and insurance won't cover it....(been doing a lot of research) and also it seems that i see a lot of reports of when symptoms match mine, that it doesn't always work and sometimes takes multiple times...so I'm not so sure about taking that step. And then to make matters worse today the pain started shooting into my leg and i found a vein sticking out in my leg and spider veins which i've never noticed before.

Has anyone else dealt with pelvic congestion syndrome with the following symtoms and do they match up?:

-pain...lower abdominal left side and center, constant dull pain, stabbing sharp severe pain with activity, sex and standing or sitting, basically relieved only when laying flat...side laying brings out the pain also, radiates into the back and left leg, sometimes its almost a burning pain

-fullness and pressure in the pelvic area again, worse after sex or activity

- nausea/vomiting (though i think mine is due to reaction from pain)

- constipation

- difficulty using the restroom (painful urination and bowel movements when they occur)

- Painful menstration

- menstration with large (like almost the size of my palm or fist) clots

- chest pains (especially at night)

- sleeplessness (i don't sleep much anymore period)

- varicose type viens in the legs

I'm just stuck at the moment. I can't work, I've been on medical leave now for almost 2 months. I'm basically useless, I can't stand for very long, and I think my couch has molded itself to my body. I'm an avid volunteer and always busy with either my own volunteering, work and kids, and being down like this is driving me crazy. (in turn I'm driving my husband crazy ) And I'm not crazy like this GYN seems to think I am....

My husband and I are leaning toward a hysterectomy, We have our kids, we never planned on having any together (5 is more than enough), I even have a tubal ligation. I'm ready to be on the road to recovery, not still be trying things months down the road. But i'm still on the fence due to my age, and worry about early menopause etc... Have any of you dealt with this and had a hysterectomy or other treatment? and how did that work? After, the procedure, were the changes tolerable, and did it help? Was it worth having the hysterectomy done?

I'm just still in scared, not knowing for sure what's going on stages so I'm still researching options. Thank God i have a wonderful caring very supportive husband right now, I think i would have gone nuts without him.

Any help would be appreciated!!!

Omg, this sounds so horrible. I'm so sorry for you...I can't really help bc I don't know anything about this all, but I hope someone else knows and can offer some help. I will definitely be praying for you though if you don't mind. I really hope you can get some answers soon.

(((Ziemba2011)))

I am so sorry you are in so much pain and feeling so miserable.

Before making any plans, I would strongly recommend seeing another gynecologist, even going out of town for one since you are in a small town. If your issue is Pelvic Congestion Syndrome (PCS), a hysterectomy may not be a cure. In fact, if you are now having a varicose vein in your leg that could be indicating the problem is a bit more complex. PCS can affect multiple veins, not just ones to the uterus or ovary. This article may be helpful for you: Pelvic Congestion Syndrome - Hysterectomy the Answer?

You may also want to check out this website: https://www.hystersisters.com/vb2/lin...=jump&lid=2108

I am glad your primary care is trying to help you and he may be able to refer you to a large medical center for a second opinion.

By the way, what did your gynecologist find during your laparoscopy?

WOW!!! I am angry just reading your story! 1st...find a new GYN! Inexcusable behavior on his part. 2nd...keep a note book with you to keep up with details (doctors, tests, names of nurses, office numbers ).

Now I don't know anything about pelvic congestion but I do know about constipation. You can become dependent on those medications so be careful. My gastointerologist put me on Align Probiotic. It is expensive but it works. You can get it in most big box stores and pharmecies. Take it in the morning when it doesn't have to fight food to get into the colon. Also, add Benefiber to your diet. It really does desolve to nothing in water. Apples work great for me.

Lastly stay vigelent! I know a lady who was told she had a cyst on her overy but it wasn't...it was colon cancer. Don't stop till you find a doc who has a clue and can help you sort all this out.

I'll be praying for clarity for your docs and pain relief for you.

Grace peace & love...

I'm so sorry to read what you have been going through. I don't know what pelvic congestion is, but I had severe pain in my left ovary, pain and fullness in pelvis and pain during/after sex with bleeding. My gynecologist wasn't sure what was causing the pain, so put me on a course of GNRH injections. This stopped every symptom, so my gynecologist knew that a hysterectomy was necessary.

I hope you get things sorted soon. I am only 34 and had everything removed.

Pelvic Congestion Syndrome (PCS) is varicose veins in the lower abdomen and pelvic region.

Ziemba, This runaround you've been going through sounds exhausting. At least it seems you have a PCP that is doing all he/she can to help you.
I was having many similar symptoms about a year ago- the large palm sized blood clots, pelvic pain, and chest pains at night when I was trying to fall asleep. One gyn said, "you definitely have PCS and Adenomyosis." A minimally invasive surgery specialist said, "it might be Adenomyosis, but there is only one way to confirm that- a hysterectomy." this is because pathology had to examine the uterus to see that. She said PCS is "not something we know much about." She is the head of gyn for a large hospital system, teaches at the university medical program DBS relies on research when making decisions. So, completely confused I remained in pain until I was tired of sitting in bed, had left work, and hadn't found any better answers after a normal colonoscopy (strange things on a CT - dialated loops of bowels).
It has been 5 months since my TLH. I kept both ovaries, but chose to have the dr take the cervix.
Even after several imaging tests and bloodwork no one had the right diagnosis until surgery.
I was diagnosed with Stage 4 Endometriosis and had dense pelvic adhesions. Luckily my surgeon is well versed in this area and excised all endo at time of surgery.
My best advice is to get to a gyn surgical specialist that is familiar with all the possibilities of what he/she may find at surgery, endometriosis especially.

At this point, I'm dealing with a UTI which isn't a great place for me to give an update on my condition. However, there was about two weeks where I was feeling pretty good about the surgery in between the 10 weeks recovery period and the start of the bladder symptoms. It is a journey. I wish imaging tests could better reveal what is going on inside our pelvic regions, but that option isn't available yet. Weigh your options and make the best choice. If you are continually miserable dont stay on the fence too long. Once you find a surgeon you respect and trust to give you a trustworthy evaluation, the best option will likely reveal itself. It seems that is the next best step, find that doctor. .
Best to you.

Hi.
I'm sorry you are dealing with all of that. I know all too well how frustrating it can be as I do have pelvic congestion syndrome. I can only tell you how it affects me.
I have been miserable for 7 months. Everyday is super painful & because I can't take ibuprofen or aspirin which I did try & it did nothing, I'm on percoset daily & it only takes the edge off never takes the pain away. I have missed a lot of work & a lot of family occasions. The pressure I feel in the pelvic area spreads into my vagina area & back by my rear end & down my legs. The only thing that helps me is literally laying in bed on my side day after day.
The 3rd ultrasound I had done did show the congestion & there was a lot of it. I have researched so much but there is not a lot out there.
I do have constipation which is most likely caused by the narcotics I'm on & the pressure everywhere.
I'm 50 years old & had hysterectomy last January. I did not have his issue before my surgery so just getting a hysterectomy most likely will not help you unless you remove your ovaries too. For me I'm having my ovaries removed next Monday. I'm done. Is it a 100% guarantee, nope but its my best option & I'm pretty confident it will take care of it. From everything I was able to research this is the option that works for severe cases that I have. I also looked into the embolization surgery but because of other issues I have chosen not to go that route.
Anyway the best way to describe the pain is like imagining your veins filling up with blood where they are going to burst then putting a truck on your pelvic area and twisting all your veins at the same time. Then add some hot shooting pains too.
I wake up somewhat ok but as soon as I get up it gets worse. Sitting for long periods is the worst for me & standing is a close second. By the evening I can't even walk. Hot Epson baths or a heating pad feels the best.
To top that off no one really understands. I can be at work & then start to cry from pain. My coworkers want to help & ask where the pain is & I can't really tell them.
Sorry this got so long. I'm on my phone & just started typing away.
Its the first time I have actually told anyone how it really is.
I wish you the best with your decision. Everyone is different & what works for one person might not for another.

Hi, I realize this is an older thread, but I was recently diagnosed with PCS and hoping to get an update from you.

I think I caught mine pretty early, that's typical for me. I have 3 kids, all were 8-8.5lbs with 14.5" heads. I gained 50lbs each pregnancy, no matter what I did, and lost it fairly quickly. With my last kid, I had a week pubic symphysis and needed PT, Chiro and acupuncture to manage the pain and delivered on my side to avoid breaking the symphysis! More PT after delivery. Continued chiropractic care. I was ok for a few years.
In July 2017, I experienced a sudden uterine prolapse with constant, dull pain. Offered a pessary, but after research I decided it wasn't for me. I did ok until March 2018. Pain with intercourse had become almost unbearable, and the constant dull pain was increasing. Went to my previous gyno and was told it was time for hysterectomy, no diagnostics done besides a 2 minute pelvic exam. I called the nurse about increased pain and was told it was common prolapse pain and to schedule surgery. I did, but after talking to others I decided to get a second opinion. Took me some time due to hubby's new job and changing insurance.
At second opinion, the Dr spent 90 minutes with me, did an ultrasound and explained what she saw. Couldn't find my left ovary, possibly behind my intestines. She used the vein coloring to point out my pelvic congestion. So I have a LAVH scheduled with her in 3 weeks. I've been taking it easy, avoiding standing, and resting as much as possible with three kids, ages 10, 7, 5. I did several weeks of PT before my diagnosis, I have good strength and control of my pelvic floor, and will resume that at half strength a few weeks after surgery.
I hope that you are doing well and look forward to hearing from you!

I don't know if this will help you but here goes.

6 years ago I started with left side abdo pain which increased and became unbearable. I was scarfing Tramadol and Paracetamol and Codeine like there was no tomorrow. A laparoscopy found adhesions to my bowel and these were removed and I was fine.

4 years ago I collapsed with abdo pain. Left sided. It kept coming back and getting worse. I was seen my gynae, colo-rectal, urology, gynae, A&E. Nobody would help me and nothing showed up in any scan, MRI, barium screen. I got told it was all in my head and treated as a drug seeker. In the end one nice A&E Dr suggested I may have endometriosis. I got referred to a specialist centre. One scan there and the ultrasound lit up like a Christmas tree. Dr said that whatever else was going on I have pelvic congestion and that blood was pooling in the vein to my left ovary and tube so they would need to come out. When he went in he found adhesions and endometriosis. I came out of surgery in less pain than I went in with.

I have pain back now and because of my history a hysterectomy is the next step. My right ovary is an issue and I wouldn't be surprised if I have congestion there or if it is adhesions on it.

If it is "just" (saying that as I know it is excruciating) pelvic congestion then just removing the affected part may be a better option than having everything removed.