The Chronic Pain Condition You Might Have—But Never Heard Of
Most humans equipped with a uterus will have some experience with pelvic pain at some point in their lives. Usually that pelvic pain we know all too well is associated with our periods. For some, the pain during that time is so severe and debilitating that you call off work, cancel plans, and can do nothing but curl up somewhere that just minimizes the pain in any way. But what about those of you who have excruciating pain without the presence of your period? Normal mundane activities are hard to do, because simply just standing up straight brings sweat beads out of your pores. Much noise has been made about common female reproductive diseases and conditions such as Endometriosis, Pelvic Inflammatory Disease (PID), Polycystic Ovarian Syndrome (PCOS), fibroids, and ovarian cysts.
In fact, according to Johns Hopkins up to 10% of women in the U.S. between the ages of 25 and 40 will be affected by Endometriosis.
10% may sound like a small percentage, but with Endometriosis being the 3rd cause of infertility behind PCOS and irregular ovulation—it’s something to take seriously.
But as the title of this article suggests, this isn’t about Endometriosis or any of the other common gynecological disorders. This is about Pelvic Congestion Syndrome. Have you heard of it? Nope, didn’t think so. Neither did I, until I was diagnosed with it. My symptoms were spot on with:
Dull aches in the pelvis and back that can sometimes be throbbing and sharp
The pain usually was worse during the day because I was either standing, walking, or sitting—that’s right, simply standing can exacerbate PCS pain
]The pain would worsen during or after sex and around my period—especially that first day of my period
Heavy pressure and sharp pain in the anus
Other symptoms (that I did not experience) include:
Abnormal vaginal bleeding
Clear or watery vaginal discharge with pelvic pain
Mood swings, fatigue, headaches, and abnormal bloating
I started experiencing intense pelvic pain about 6 or 7 years ago during college. The pain was more intense than I could ever possibly describe, so I won’t try. Though think along the lines of nails being hammered into your pelvis from all directions, that’s a good start. In the years since, that pain has maintained its severity, but has eased up on its presence. Two years ago when I was at the height of my stress and depression, I’d have a fit the day before every period, without fail. The fits would look like me on the floor, crying, sweating, so much pain my vision would blur or dark, and not knowing what the hell was wrong with me. This year I decided to officially get it looked at, out of fear that it could really be something serious that I had ignored for far too long. I was pretty confident that I would be diagnosed with something, there was no way the pain I’d experienced was nothing, but Pelvic Congestion Syndrome surely didn’t cross my mind.
“Pelvic congestion syndrome is a condition that causes chronic pelvic pain. Thought to be caused by problems with the veins in the pelvic area,” says Cedars-Sinai.
Unfortunately, as is with most conditions that afflict women, healthcare professionals are still trying to understand the causes of PCS. Enlarged veins in the pelvis seem to be culprit though; happening when the blood vessels in the pelvis begin to build up with blood, therefore the veins can enlarge and change shape leading to pain. PCS affects mostly women of childbearing age, and may be more common with woman who have given birth to more than one child. According to Cedars-Sinai, hormones may have something to do with PCS also, which is why it ordinarily doesn’t affect women after menopause. Since estrogen makes veins wider and they lower during and after menopause. Diagnosing PCS isn’t an easy feat either. “Pelvic plain is common and there are different causes”, asserts Cedars-Sinai. Pelvic pain can result from the reproductive system, the bladder, the gastrointestinal system, and mental health conditions like depression. Hell, men even have pelvic pain. So when you complain about such to a doctor, it’s a broad symptom that could yield multiple different diagnoses. Pelvic ultrasounds may be requested to diagnosis PCS, and was actually how I was told I have the condition. CT scan or MRI can also diagnose PCS for more detailed pictures. Your gynecologist may even resort to a Laparoscopy to rule out any other potential causes of pelvic pain—like endometriosis.
When I was diagnosed with pelvic congestion syndrome, I was actually expecting an Endometriosis diagnosis. My doctor told me that the veins in my pelvis were larger than she’d expect for women my age, and without prior childbirth may I add. I also learned that though I have been confirmed to have PCS, that doesn’t mean that I don’t have Endometriosis. Which brings us back to that Laparoscopy. Laparoscopic surgery is when a fiber-optic instrument is inserted through the abdomen, allowing for doctors to view the organs inside via a small camera. This procedure is the only sure fire way to diagnose Endometriosis, because it allows doctors to see the scaring and tissue growth inside the reproductive system. I personally have not yet had the laparoscopy, and will probably feel more compelled to get the procedure if I have difficulty getting pregnant, once I start trying.
We’re at the point now where we should start discussing the treatments for PCS, and I wish they were more hopeful than they are. My doctor informed me that for the most part, there is no cure for pelvic congestion syndrome. You can take extreme measures such as a hysterectomy (removal of the uterus and ovaries), or embolization—a procedure that shuts off damaged veins. I am not a good candidate for either of these procedures since I have not yet had children—and having a hysterectomy means I wouldn’t be capable, and the embolization could be too risky. Medicines such as progesterone may also be a course of treatment some may recommend. But unless you opt for removing the uterus and ovaries, there’s no way to eradicate PCS. Best you can do is find ways of managing it. Heating pads, Pamprin, and warm baths are what I usually confide in to ease my symptoms.
It hasn’t been confirmed by a doctor, but I also think that since I’ve been on an antidepressant for my depression, I’ve experienced less severe pelvic pain. Since doctors are still learning to diagnosis and treat PCS, hopefully we’ll see better treatments in the future. For now though you have to be your own advocate! If you’re experiencing pain that feels abnormal—go see a doctor! Far too often female pain is diagnosed as hysteria or “phantom pain”, but if you think something is up don’t let someone tell you otherwise. You may need several tests to rule out the true causes of your pain, but it’s a worthy investment—especially where peace of mind is concerned. If you think you could have pelvic congestion syndrome or have any of the symptoms above, please consult with your doctor for answers. You’re not alone, your pain is real, and you’re entitled to finding relief that works for you.