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19 Things People With Endometriosis Are Pretty Damn Sick Of

"Maybe the pain is just in your head." ER CAN YOU NOT?

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1. People who say "it's just period pain" drive you crazy.

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It's really not. Endometriosis is when the tissue that lines the womb, called endometrium, grows outside of the uterus. It can cause scarring and severe pain when it tries to shed, just like the lining normally does during your period, but the problem is that it has nowhere to go. Plus, sometimes your organs fuse together due to the scar tissue, called adhesions. You can find out more here.

2. It can take a long, long time for endometriosis to be officially confirmed by a medical professional.

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And misdiagnosis is common. It takes an average of 7.5 years to receive a formal diagnosis, as many people think (at least at first) that level of period pain is normal. Also, many of the symptoms are similar to other common conditions. My symptoms started at the age of 10, but I didn't get an official diagnosis until I was 23.

3. And doctors often don't take you seriously.

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This is especially true when you're young and try to get help, with doctors saying unusual period cycles will settle, that the pain is just "in your head", or that severe pain is normal. The only official way to be diagnosed is through a laparoscopy, i.e., a camera through your belly button, operated by a skilled specialist who knows what to look for.

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4. Keeping a diary can help you to get diagnosed.

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Specialists recommend it, as it can identify a pattern of the pain or highlight if anything (food, exercise, sex) is making it worse.

5. The pain isn't always in your stomach.

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It depends where the tissue is growing, so it can be in your back, or other parts of the body too. Again, keeping a diary to see if there's a pattern can help.

6. Some doctors casually tell you to have a baby.

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They say it as if it's no big deal, as if you can just go and buy a baby in the pharmacy and it will miraculously make it better. It won't, and it's not a helpful suggestion, even without mentioning the difficulties that many women with endometriosis have with conceiving. Plus, it's frustrating when doctors make a blanket assumption that you want to have children at all (and many women don't.)

7. Some other doctors put pressure on you to "have started and finished your family by xx age".

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But life doesn't come with a handy pre-planned schedule, and it's already hard enough living with this pain, let alone having a deafening biological clock ticking away as well.

8. Wearing tight clothing isn't really a possibility.

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Water retention and swelling can make your stomach bulge, to the extent that you can sometimes look around six months pregnant during a bad flare-up.

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9. Tampons really aren't our friend.

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It's night time sanitary towels only, changed every other hour if you're lucky. Tampons aren't suitable for the exceptionally heavy bleeding or clots caused by endometriosis, meaning leaks can (and will) happen.

12. The sanitary product adverts where women race around gleefully rollerskating make you angry.

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You're lucky if you can even get out of bed, let alone go swimming, running, or rollerblading on a beach while walking several dogs. Symptoms are different for everyone, but the majority can have pain throughout the month that worsens in the days before and during their period. And some people have it all month long.

13. You can never white trousers or skirts in case of a leak.

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It's not worth the embarrassment of blood leaking through even the most heavy duty sanitary protection you can find. So you just sit back and admire (and envy) people who can wear white clothing. Especially skinny white jeans.

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14. And your irregular cycle really stresses you out.

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Two weeks on and three weeks off is a possibility, but a regular four day period once a month is unlikely. Basically, your period is an exciting surprise every month! If it starts later than normal it can cause anxiety about pregnancy, and having to carry pads all the time just in case is frustrating, especially when you can feel the pain is worsening. Regular long periods can lead to anaemia as well.

16. Many of us try every form of contraception going.

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The mini pill, the progesterone only pill, the implant, the coil. But the good news is that when you find what works for you, it can really help with your symptoms. Keep at it, as everybody (not to mention every body) is different

17. Sex can be painful if you have endometriosis.

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Pain during sex is a common symptom, although not everyone has it. But if you do, it can affect intimacy for couples due to bleeding during or after sex. The wider symptoms of endo can also cause a loss of body confidence or desire due to the pain or swelling. It's a complicated issue and one that requires patience.

18. We know we're always oversharing, sorry.

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Nothing is taboo for us anymore, mainly because we're always talking about our periods or cycles, plus after numerous laparascopies and internal ultrasounds (where they put the wand up there) you don't bat an eyelid at smear tests. So we tend to be a quite graphic when it comes to talking about our lady parts.

19. And remember, endometriosis is an invisible illness.

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Aside from the stomach bloating, endometriosis can't really be seen, so like many other hidden ailments it can be hard to explain to people who don't understand (or who underestimate) our symptoms. So please don't make assumptions!

This list represents one person's experience with endometriosis. If you're affected by endometriosis, you don't have to go through it alone. Endometriosis UK have support groups and a wealth of information online. Or, if you're based in the U.S., contact The Endometriosis Association.

Radio presenter, mature student, writer and music journalist.

Contact Jen Thomas at journojenthomas@gmail.com.

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