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The Often Misdiagnosed Disease that Feels Like Your Junk Is On Fire

Nov 16 2015 4:48 PM
The Often Misdiagnosed Disease that Feels Like Your Junk Is On Fire

Photo by Milles Studio via Stocksy

I went through several doctors and three weeks of eye-watering pain until I was diagnosed with pelvic inflammatory disease. Here's why PID is so misunderstood.

Before two weeks ago, I'd never heard of Pelvic inflammatory disease, but by god I wish I had. If I'd been aware of PID and the signs and symptoms, I could've put out the fire in my groin ASAP. I'm no stranger to your common or garden urinary tract infection—in fact, I spent much of my early 20s downing cranberry juice and praying to the vengeful piss god—but PID is an altogether worse downstairs problem.

In simple terms, PID is an infection in your junk. Dr Eleanor Draeger, a London-based sexual health expert and genitourinary medicine consultant at Lewisham Hospital, describes it as an "'inflammation of womb, fallopian tubes and ovaries... normally caused by a bacterial infection."

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PID is commonly thought of as a sexually transmitted infection, even by doctors, but that is not always the case. "About one in four cases of PID are caused by a sexually transmitted infection such as chlamydia or gonorrhea," Dr Draeger explains, though there are other ways it can get all up in your womb.

Anna, a 37-year-old translator from London, got it after having laser surgery for genital warts. "I had them removed in France, then again in the UK when they hadn't gone properly," she said. "After the laser surgery in the UK, I contracted PID."

In the many internet forums I visited on this topic, lots of women reported that they had contracted it after pregnancy, or after having an IUD coil fitted. The bacteria that causes PID can come from your vulva or anus and be spread during sex. Like me, a lot of women online also seemed to get it after a bladder infection. I don't know if this is because they were initially misdiagnosed with a UTI, or because the infection can spread from the urinary tract into the womb. Dr Draeger suggests it's the former: "It may be that women have symptoms of pain passing urine and abdominal pain, before being diagnosed with PID."

The symptoms of PID vary. I had a bloated abdomen with pain very low down in my belly, similar to where I get period cramp. The pain radiated out from my womb into my tubes and ovaries and down into my groin, with sporadic lightning bolt-like shooting pains through the whole area. I needed to urinate more often than usual, but it was difficult to go. Other common symptoms reported on the forums included white or green (!) discharge, bleeding between periods, high temperature, loss of appetite, pain or difficulty urinating, and even leg and shoulder pain. One woman, a 25-year-old barista from Sheffield, only had one symptom: "A deep pain during sex".

PID is also frequently misdiagnosed. This kept coming up with the women I spoke to and the stories I read online. Anna took a long time to get her diagnosis. "They didn't know what the unexplained pain was, and after lots of tests and not knowing, they said it was PID, but their explanation of the condition was basically that they couldn't see what else it could be," she said. Unlike a bladder infection, there is no one simple test that can be carried out to show definitively that you have PID.

"PID is a clinical diagnosis—that means that the only way to tell if someone has it is by taking a full history of their symptoms and doing an internal examination," Dr Draeger says. "There is no specific test for PID, only tests which can give clues as to the diagnosis."

Carly, a 28-year-old teaching assistant, has an even worse story. She experienced symptoms of PID for three and a half years before she found out what was wrong. "It was only when I saw a leaflet on PID I thought, 'Oh my god! That sounds like what I have!' A nurse confirmed it after some examinations." Carly had been going to her doctor with symptoms for three years; the doctor simply kept testing her for UTIs and diabetes.

I was diagnosed with a UTI three times before I was properly diagnosed at a sexual health clinic. None of the doctors I had seen previously, including two A&E doctors, did anything more than a cursory external examination, where they felt my abdomen and asked me where it hurt. Even though I was clearly in a great deal of pain, they didn't give me an internal examination.

The fact that women's pain is taken less seriously than men's has been studied and written about before. Generally it means women wait longer for pain relief, and are wrongly diagnosed with less serious conditions. In one study of 981 patients at an A&E department, researchers found that women were 13.6 percent less likely to be prescribed pain-relieving analgesia. This could be a reason that PID can be misdiagnosed as something less serious, though Dr Draeger suggests that it's largely the difficult clinical diagnosis that means that PID can be missed initially, "because there are also many other causes of lower abdominal pain in women it can be difficult to diagnose it."

I only went to the sexual health clinic because I was desperate—my pain was driving me to distraction, and I could barely walk straight. Not only did the nurse at the clinic make me a cup of tea, but both she and the doctor gave me an internal examination along with a urine sample and a cervical swab. I was relieved when I finally got a proper diagnosis; PID is easily treatable with two courses of antibiotics taken simultaneously and an injection in the butt to get you kick started.

The problem with doctors not seeming to know about PID is twofold. Firstly, it is incredibly painful. On a scale of zero (not at all painful) to ten (fucking agony), my pain was at a six to seven for three weeks before I was properly diagnosed. But perhaps more detrimental, PID can affect your fertility. While my baby-making factory was burning down, doctors were casually telling me to drink more cranberry juice. "Untreated PID can lead to a pelvic abscess, which may end up with the woman needing surgery and a hospital admission for IV antibiotics (antibiotics into the vein), chronic pelvic pain, infertility, and an ectopic pregnancy," Dr Draeger warns.

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I don't know what long-term effect PID had on my equipment, and neither did any of the women I interviewed. It seems unfair that the women I spoke to didn't receive follow-up care to check the health of their reproductive systems, especially those who've had symptoms of PID for a long time. Carly, who already has a child, sums it up best: "I would like to have another [kid] someday."

The two biggest take-homes for me are: a) be womb-aware. If it doesn't feel like an ordinary UTI, it probably isn't. And b) family and emergency room doctors don't seem to know that much about your junk, so just go straight to a sexual health clinic. Dr Draeger agrees. "The first point of call should be a sexual health clinic—this is because they are more likely to have access to the correct tests and treatment in a sexual health clinic than in A&E or at the GP."

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