Pelvic Congestion Syndrome Is Ruining My Life – But Doctors Won’t Help Me

Photographed by Daantje Bons.
When it comes to chronic pain getting the condition taken seriously, let alone identified, can be as draining as dealing with the pain itself. This is especially true for women who tend to be most affected by chronic pain. The combined forces of sexism, ableism, lack of research and underfunding can leave women suffering for years with little offered to relieve the burden.
This is particularly true when it comes to pelvic congestion syndrome.
Pelvic congestion syndrome (PCS) is a condition caused by varicose veins hidden in the lower abdomen and pelvic. As Professor Mark Whitely, Consultant Venous Surgeon and Founder of The Whiteley Clinic tells R29 “just like varicose veins in the leg, if the valves in the pelvic veins fail, then the blood that should be pumped out of the pelvis and back to the heart stays inside the dilated varicose veins. This stops the normal blood circulation to the pelvic organs and causes the large varicose veins to push on the bladder, bowel, vagina, and pelvic floor.” This pressure can cause irritable bladder, irritable bowel, deep discomfort during or after intercourse and an aching or dragging in the pelvis. The poor circulation also increases risk of inflammation in the pelvic vein, causing more pain.
It is difficult to work out how many people suffer with PCS. Dr Swati Jha, consultant obstetrician and gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists points out that PCS is not exclusive to women and people with ovaries – men can have PCS too – but it’s far more common with women. However “unfortunately due to a lack of research and awareness of the condition is difficult to diagnose, and can be misdiagnosed or undertreated.”
While it is known that chronic pelvic pain makes up to 10-40% of gynaecological outpatient department referrals, the numbers that are specifically PCS is as yet unknown, as there is currently little education about the syndrome among medical professionals, even gynaecologists. Professor Whitely points out that despite the high number of referrals for pelvic pain, “PCS is rarely checked for by gynaecologists and a surprising number of gynaecologists report ‘large varicose veins in the pelvis’ at investigation such as laparoscopy, even though they then say that the test was ‘normal’.”
Dr Jha agrees, adding that “more research is needed around PCS, so that healthcare professionals can better understand the symptoms and raise awareness of the condition.”
Part of the problem is that PCS is not gynaecological but venous, meaning those suffering with PCS will have a much harder time accessing the correct treatment. Additionally, the symptoms correspond with other gynaecological problems that are in themselves underdiagnosed. “Because other gynaecological conditions such as endometriosis can cause similar symptoms, doctors may suspect other conditions before diagnosing PCS," says Dr Jha.
Treatment is possible, but it can be hard to access. There is only one NHS hospital in the UK that does a procedure called Pelvic Vein Embolisation, where very thin catheters are placed directly into the veins that need treatment. The alternative is to go private, such as at The Whitely Clinic. However, Dr Jha says that there currently is only limited evidence of efficacy at this point. In place of surgery, “there are medicines (usually hormonal) available to reduce the pain, and anti-inflammatory medicines may also help.”
Refinery29 spoke to Carys, a 29-year-old woman in Portsmouth living with PCS about her long, fraught journey to diagnosis and all the ways that women’s pain isn’t taken seriously, from doctors to workplaces. Here's what she had to say.
Ever since I started my periods when I was about 12 I’ve experienced a lot of pain. As I've gotten older, it gradually worsened until at around 22 the pain became unbearable. It stopped being just period pain and became almost a constant. You'd get good days where it's just a heavy feeling and you can put it to the back of your head and deal with it, to days where it felt like your insides were being ripped out.
I went to the GP and he put me on the pill for two years which didn’t do anything. So I tried the Mirena coil which helped for about nine months before getting much, much worse. After 18 months, I knew I needed to have it out. I went to a nurse to remove it and as she did so she asked me “are you sure that's the Mirena coil? Because it doesn't look right”. She didn't believe me until she checked my records. It turned out that something in my pelvis had crushed the top part of the ‘T’.
Around this time I was in A&E probably once or twice a month. The flare ups meant I couldn't move and was screaming and crying but all they could do was give me morphine and do an ultrasound where they couldn’t see anything. When I talked to my GP, saying I needed something for the pain, he dismissed me saying “it could be psychological”, “it’s not that bad”, “you could be getting addicted to pain pills” (even though this was the first time I was asking for pain medication). After telling me this was a slippery slope he offered me oramorph [oral morphine] which felt like a trap because morphine is really addictive. I ended up with Tramadol which is a step down pain relief wise, but I felt so pressured and gaslighted by the GP, I wouldn't take my Tramadol until the very pinnacle of pain, by which time it was too late for it to kick in. Every time I'd ask for another prescription, the GP would say that I'd only had one three months ago.

"The most frustrating thing that I've heard time and time again is that 'it shouldn't be that painful', coming from somebody that doesn't even have a uterus. How would you know what normal period pain is, let alone abnormal? Why are you telling me how much pain I'm feeling? Shouldn't that be the other way around?"

At 25 I started to do my own research. After the occupational health nurse who I was talking to about my sick leave recommended I look into endometriosis, I did some research and it seemed like a good fit. I told my doctor I wanted to be referred to gynaecology and about two years later in January 2020. I went and had my lap surgery [laparoscopy]. The gynaecologist was so sure it was endometriosis that even though it's a day surgery they booked me into a ward afterwards, because they were certain I'd need more care. But after the surgery the gynaecologist said "well, good news. This is not endometriosis." It turns out I have a bicorn uterus: instead of being shaped like an upside down triangle, mine's heart-shaped and I have two separate sections in my uterus with a pronounced dividing uterine wall. All my blood vessels are so inflamed that it's just blocked the left side of my uterus and the amount of pressure it's putting on the surrounding nerves is what's causing the pain. At which point he told me they'd inserted another coil this time in the cervix. 
We now think that the first coil was causing me so much pain because of the congestion and the shape of my uterus had caused the coil to travel into the left side. And because of the pelvic congestion it was crushed. I’ve now had another coil inserted (this time in the cervix) and over the beginning of 2021 the gynaecologist put me on Zoladex injections. This breaks down endometrium and almost puts you into menopause. I've gone from my periods being regular and painful to irregular and feeling pain at random times. The reason why PCS is so linked to your cycle is because as your cycle progresses, the blood flow to the area increases which causes pelvic construction to flare up. But now it just flares up whenever.
COVID has made things really difficult. I need to see a vascular surgeon for a Pelvic Vein Embolisation which isn’t a permanent cure but would likely leave me pain free for a few years. There's only one hospital on the NHS in Sheffield that treats pelvic congestion syndrome and it took a lot of research to find if the NHS treats it at all. To go private would cost at least £5,000. I haven't been able to get an NHS referral because of COVID and because I moved six months ago and the GP can’t get a hold of my medical records. So I’m waiting to go on a waiting list. In the meantime the Zoladex is definitely wearing off, the flare ups are becoming more regular again and I’m incredibly frustrated. I know what needs to happen but it doesn't seem like it's gonna happen quickly.
I've found it difficult to get people to take my pain seriously. Male doctors are particularly bad. The most frustrating thing that I've heard time and time again is that "it shouldn't be that painful", coming from somebody that doesn't even have a uterus. How would you know what normal period pain is, let alone abnormal? Why are you telling me how much pain I'm feeling? Shouldn't that be the other way around?
Work has been very difficult too. Companies don't quite understand how to deal with someone with a chronic illness that's going to be sick a lot. I’ve moved jobs since this happened but at my last company I'd been off sick for a week and occupational health had told me that if I am off sick because of my chronic illness, it doesn't count as sick days. But when I came back one of the managers put me in a meeting and told me I was being suspended, active immediately and I'm under review because of my time off sick. I was told I’d be suspended for two weeks while they decided whether they were going to fire me or not. But half way home I get a call from the same manager saying that he just spoke to occupational health and said "I've been told I'm not allowed to put you on probation, so take the rest of the weekend on us and we'll see you on Monday." Basically, he'd been told by HR that if he fired me I could sue. When I came back to work they didn't even apologise.
It's been difficult for my mental health. I felt very depressed for a long time as I was missing out. I felt I could do so much and was so lively and active and then it got to the point where I was walking with a stick. If we were going to go in for a long walk for example we'd have to be 100% sure I could do it – I didn't want to get stuck on a hill and my other half to carry me home. The amount of stuff I would cancel because I'd get to the day and be in too much pain… you feel like you're losing yourself and your whole identity is being chronically ill, and that you've got nothing else. It feels like all you ever do is talk about it. That's why I created my Instagram – I just needed somewhere to put it. And then I found this wonderful community of people where we can talk about our chronic illnesses and also acknowledge that we also have a life. You get this sense of community and it's helped with my mental health quite a lot.
I wish people understood that chronic pain is not just pain. It's so much more than that. People seem to think of chronic pain as being in constant agony but it's not. It's varying levels of manageable to unmanageable. It's something that you live with every second of every day. It's always that little bit of niggle in the background, but can still have a life with it. It's not who I am, it's just a part of me.
The RCOG has just launched a survey to try to understand the impact of gynaecological waiting lists on people with debilitating conditions like PCS. To share your experience visit this link.
This interview has been edited and condensed for clarity

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