Jess shares her story living with Pelvic Congestion Syndrome and how she now helps others

Posted by
Hi, I’m Jess. I love bees, coffee, people watching, and books. I spend my free time (which I have a lot of lately) drawing, sculpting and looking after my hundreds of plant babies. I’m originally from the South Coast of England where life is greener, slower and, depending on how rural you go, about 30 years behind everywhere else but I currently live by the beach in Essex. On the outside, I don’t appear disabled. I don’t have any body parts obviously missing, I’m not in a wheelchair or require any other mobility assistance and am fairly independent on the days that my body and I are friends. It’s only once you get to know me that it becomes clear I struggle to keep up with the people my age and on some days, am better suited to hanging out with 84 year olds.
I live with a chronic pain condition which, on bad days, affects just about everything. In 2013 I was diagnosed with Pelvic Congestion Syndrome which, in non-medical terms, translates to a f%£* load of varicose veins living in my pelvic area. The chronic pain is secondary to these veins and is generally triggered by anything that gets my heart rate too high. This includes, but is not limited to, stress, exercise and anxiety. Sometimes, however, there isn’t a trigger; sometimes the pain is just really bad and we can’t figure out why.
Through trial and error over the years I’ve found a few things that can relieve some of the pain, but nothing can really extinguish it once I’m in a flare up. Things like a hot bath, music based meditation or even a small walk can take a bit of the pressure off. But these aren’t always guaranteed to work and can sometimes aggravate it even further.
The official diagnoses came about 18 years later than the pain and I don’t remember a time when the pain wasn’t there. The dull, heavy ache that feels I’m hoarding an anchor in my pelvis has become so familiar now that I can’t imagine it not being there. It’s come and gone over the years, been worse at certain points and, whilst not exactly non-existent, certainly calmer at others. But when I was about 18, things took a turn for the worse and I found myself spending 70% of my time in the bath and the other 30% wondering when I could next get in the bath. I’m still finding ways to live alongside the pain instead of letting the pain be in control and I’m constantly trying new things in case I’ve missed something that helps. But fundamentally, the pain is as much a part of me now as my brown eyes are.
I spend a lot of my time in and out of hospital and I’ve met more doctors than I have barmen (fun fact: my personal record for the amount of heads between my legs at once is four, which, considering I’ve never been pregnant and not really into orgies, is arguably impressive for a girl in her twenties). Cancelling on nights out and pre-arranged events has to be factored into any plans I make because the pain is so unpredictable. This naturally isn’t easy on the other parties involved and has unfortunately meant losing some friends along the way; it can be really difficult
to understand something you can’t see and to deal with someone constantly bailing on you or turning up grey and drugged up to their eyeballs can’t be easy. It has also meant I couldn’t always be there for others when they needed me which isn’t fair. However it has meant that I’ve met people I never would have otherwise. People who inspire me to keep going, to get out of bed on the mornings that feel like my uterus might fall out if I stand up, and its meant I’ve learnt to really value the friendships who can understand and are there for you at 2am holding a urine sample between your legs (Here’s looking at you Bec).
I started The Body Blues because I was finding living with a chronic pain condition a bit lonely. In general, people tend to get a bit weird when they ask whats wrong and you tell them your vagina hurts. Whilst I am very lucky to have a few very supportive and understanding people around me, I was desperate to speak to someone who knows what I really mean when I say I don’t have the energy to read a book, or can understand what its like for pain to change your personality. So I went searching and I found other women who suffer, and it was hearing their stories that kept me going. Knowing that I wasn’t the only person in the world to struggle through this made it a lot easier. I could message them when I was in a flare up and they knew what to say because they have been through them too. So I created a website that could do all of that en mass. The Body Blues acts as a platform for the stories of women who live with pelvic or
gynecological pain. Each week, we send out an e-letter that contains one woman’s story along with some interesting articles that we’ve read that week. But more importantly, The Body Blues is a place for discussion. By signing up to be a member (It’s free!), you can log onto to our private, members only area where you can chat to the other women signed up to The Body Blues and discuss the weekly e-letter, seek support from one another, or just have a good chat with someone who understand what it’s like to live with pelvic or gynecologic pain!
So whether, like me, you have a chronic pain condition, or you have a female reproductive health condition such as endometriosis or polycystic ovaries, whether your GP won’t acknowledge that your periods just seem that bit too heavy, whether you’ve confided in a doctor and have been told your pain is menstrual and therefore normal, or whether you’re over 25 and haven’t had a smear test yet because you feel too embarrassed to let a doctor near your vagina; we want to hear from you and all the others that I haven’t mentioned, because there is just. so. many. The Body Blues can help you develop a support network that makes those bad days seem a hell of a lot easier, whilst giving you people to celebrate the good days with at the same
time.
The first step in changing the way society treats the female body, in both a social and medical context, is by opening up and talking about our bodies. There are so many of us suffering and don’t talk about it because we either feel like we can’t or because we’re too embarrassed. The Body Blues is calling bulls!t on the whole thing, and we want to hear from you (and we promise we won’t give you a pitiful smile and suggest a positive mental attitude).
J
x x x
You can find her facebook group The Body Blues Here

Leave a Reply