I pull my knees up to my chest, bury my head in the pillow and rock back and forth. I’m on my 12th Myprodol for the day and it’s only 4pm. My partner is punching me in the back and it feels so good, just for a second.
I’m not having a panic attack. I’m not a drug addict. I’m not being abused.
I’m having my period.
I have endometriosis.
The UK’s National Health Service defines endometriosis as “a common condition where tissue that behaves like the lining of the womb (the endometrium) is found outside the womb.” Professor Igno Siebert, a surgeon at Aevitas Fertility Clinic and part of the clinic’s endometriosis referral unit, would describe it as “one of the most common diseases in young reproductive women, causing chronic, debilitating pain [with] a real negative impact on quality of life.”
Sounds like a bitch, doesn’t it?
Physically, endometriosis is unlike any other pain I’ve experienced. It’s a menace gnawing away at your pelvis from the inside. You can’t pinpoint it – it’s hiding in all the places your pills can’t reach.
Prescription painkillers are about as useful as Panado Syrup for a head wound. Every time I had my period, the pain was worse than before. I tried yoga poses, hot water bottles, various foetal positions, pills, weed and every combination of the aforementioned “remedies” in search of relief.
Inflicting pain elsewhere was the only sweet, yet fleeting comfort in the middle of the night.
I didn’t go to work for a week at a time. I switched from tampons to pads in the hope that it would lessen the pressure in my pelvis. Eventually all I could do was cry and hope to pass out from the pain.
Do you want to know what’s even worse? Looking in the eyes of the people you love and seeing their doubt, their misunderstanding, and just how far outside of this they stand.
I felt like a drug addict. I was suspicious of everyone who sympathised with me, convinced they didn’t believe me. I’m not sure I believed me. I felt like a complete wimp. I was drowning in guilt, berating myself for every bad life decision, thinking “if only I had lost weight” or “if only I exercised more.”
Prof Siebert has a message for all endometriosis sufferers: “There’s nothing you have done wrong.” He reassures me that I’m not to blame. The moment he recognised my pain, I felt as if someone could see me for the first time in months.
While exercise has been shown to lessen the pain of endometriosis and some doctors recommend the Mediterranean diet for the management of symptoms, it’s incredibly important for your psychological wellbeing to remember that endometriosis is not a punishment for all those times you stopped at the McDonald’s drive-thru after a big night out.
It’s not a punishment for anything.
In 2009 I begged my third gynaecologist to perform a laparoscopy to see if I had endometriosis. A laparoscopy is the sure-fire way to diagnose endometriosis. It was a routine visit to the operating theatre; I went home the same day.
When my gynaecologist reluctantly admitted that he had found endometriosis, and had removed most of it with a laser, I felt vindicated. “I know my body!” I mouthed silently over the phone.
Most importantly, I was pain free. I continued taking the pill, I no longer dreaded my period, I learnt to love my vagina again and I could have lots of sex without wincing. I had four blissful years of pain-free endometriosis.
When that gnawing feeling in my lower back returned, I went straight to my fourth gynaecologist to investigate the possibility of a second surgery. He advised against it in the strongest terms, and prompted me to try the very first drug for endometriosis called Visanne.
After three days I had a bad reaction to the drug and stopped taking it, as well as my normal contraceptive pill.
Things went downhill from there. The pain grew stronger each month and I grew weaker. My GP then referred me to a specialist, Prof Siebert. A minute into my physical exam he said: “You’ve got severe endometriosis.”
I cried because my worst fears had come true, but also because it was evident now that the pain hadn’t all been in my head.
I wasn’t just a wimp. Prof told me a story of a 19-year-old girl who was on her way to the psychiatrist because no one could explain her pain, until she was diagnosed with endometriosis.
I sat with the nurse as she ran me through the “shopping list” (their words, not mine) of procedures I was in for during my endoscopic surgery. I had to consent to letting the doctor perform something called a vaginectomy.
There was a possibility that I could need a colostomy bag post-surgery due to the location of the endometriosis. You guessed correctly – it was on my bowel. I was terrified.
A month later two surgeons operated on me for three hours and removed a piece of endometrial tissue the size of an orange. I spent three charming days in hospital being asked to “pass wind” to check that my bowel wasn’t leaking.
I’ve got five tiny scars on my tummy that I wear with pride. And now, more than a year since that day, I still take my pill, but I don’t need painkillers to survive my period.
I’m worried that my endometriosis will come back. It’s a likelihood more than a possibility. But now I know what to expect. Now I know who to go to – a specialist. I’ve got support; everyone’s empathy takes on a whole new facade when you’ve got a doctor confirming your pain. I belong to a Facebook group of thousands of women across the world who all know exactly what I’m going through.
I am okay now.
Here’s what I know about endometriosis:
- It’s difficult to diagnose, but remember that you know your body
- Remember your pain is real – don’t minimise it
- If your doctor won’t listen, find another. Better yet, go to a specialist
- It’s difficult to explain to someone who doesn’t understand the disease; find a support group or a forum online where you can talk openly
- Read up as much as you can – arm yourself with credible knowledge
Endometriosis Q&A with Prof Siebert
The reason why so many women suffer for so long is because the disease is still largely misunderstood, it’s difficult to diagnose, and people aren’t talking about it. So we asked the Prof these key questions to get the conversation started.
Is endometriosis hereditary?
We know it is familial.
What causes endometriosis?
I don't think any of us know exactly, but there are a couple of theories.
Can pregnancy cure endometriosis?
No. If you have endometriosis, we know it is ovulation-dependent because it's the normal endometrium that sits on the outside. So if you ovulate, the hormonal production will have an impact on the endometriosis on the outside. So if you are pregnant, you don't ovulate.
So obviously your symptoms will improve, pretty much the same as when you are on the pill. But once your pregnancy has been completed, you will still have your endometriosis so no, pregnancy is NOT a cure.
Can a hysterectomy cure endometriosis?
Hysterectomy is also not a cure because that is just the end organ, it just makes you bleed.
Can surgery cure endometriosis?
I think even in the best hands, you've got a 20-50% chance that endometriosis can come back.
How do I know if my pain is more than just ‘normal’ period pain?
Many young women have period pains when they start off with their menstruation, so how we do differentiate between the two? If you are put on a contraceptive and it takes the pain away, then we would normally not investigate further. But if you go onto a contraceptive and the pain remains, and you also have pain with intercourse and there's pain during the month, then obviously we need to investigate.
Why does it take so long (on average 8-10 years) to diagnose endometriosis?
There are a couple of reasons. Firstly, if you are young, we don't want to do unnecessary operations. So you've got to differentiate between the pathological pain vs the normal pains and that's where a very rough intervention is putting you on the pill. If the pill improves [the situation], we don't do anything, if the pill does not improve it, we can say “I want to see you again in three months and if you're not better, then we've got to intervene”.