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03/01/2019 14:54 EST | Updated 03/04/2019 11:59 EST

When Your IUD Becomes A Nightmare And Doctors Don't Believe You: Women Share Their Stories

"She removed my IUD, threw it at me, and left the room."

Lalocracio via Getty Images
A hormonal IUD, left and a copper IUD, right. Several Quebec women report shared stories of their experiences with the birth control device.

Cramps so painful that they become incapacitating. Nausea. Night sweats. Hair loss. Mood swings.

They're life-changing side effects experienced by some Canadian women after getting IUDs — and they say they faced doubt or disbelief from doctors when they sought medical treatment.

The small, T-shaped intrauterine devices are inserted into a woman's uterus and basically make it difficult for sperm to survive. There are two types: a hormonal IUD, which releases a tiny amount of the hormone progestin over time and can stay in place for three to five years; a copper IUD, which has copper wire wound around the stem of the IUD and can remain for three to 10 years.

IUDs can be a reliable form of birth control, but they also come with potential problems.

Four women shared their experiences with HuffPost, including frustrating misdiagnoses or doctors who resisted their requests to remove the devices.

Karine Tessier / Facebook
Karine Tessier says she dealt with negative side effects from a Mirena IUD for seven years.

Karine Tessier said living with her hormonal IUDs was like living through hell for years. Her first IUD gave her no issues, so with subsequent ones, it didn't even occur to her that her trusty, old Mirena might be the source of her trouble.

"I was in a lot of pain, I had bad cramps, nausea, hair loss, night sweats as if there was a garden hose in my bed," she recalled. "And I was sad, even though I had no reason to be. I chalked it up to pain and the fact that I wasn't sleeping well. But, it was like I wasn't myself anymore."

Through seven years and two IUDs, she underwent a battery of tests performed by many different doctors to pinpoint what was wrong. Some suspected irritable bowel syndrome; others thought it was endometriosis.

'... no one told me anything about side effects'

"I felt so alone ... I took care my of my child, who didn't understand what I had, and at the same time, doctors were telling me, 'We don't know what this is ...' I tried to explain it to my partner, but he doesn't even understand my periods!" she said jokingly.

The Mirena is one of more popular hormonal IUDs. The possible side effects listed by Bayer, the company that makes it, include nausea, cramps and increased risk of depression. But Tessier said no one ever told her about these side effects. And she's not the only one.

"When I got my first IUD, no one told me anything about side effects," she said. "The second time, I was pretty much just told that I might have pain during sex, and that my partner might feel the string. Then they gave me the pamphlet that came in the box and told me to to read it at home. That was it."

Unpleasant side effects

The most common side effects to the Mirena IUD, according to gynecologists, are pelvic pain and irregular bleeding (often referred to as "spotting"). But these effects generally stop after a few months, according to Dr. Fabien Simard, president of the Association of Obstetricians and Gynecologists of Quebec, and 57 per cent of women who have the Mirena say they stop getting their periods after a year. According to Bayer, several unpleasant side effects have been reported by women in clinical trials:

  • Cramps

  • Nausea

  • Vaginal infections

  • Weight gain

  • Headaches

  • Depression

  • Lowered sex drive

  • Agitation

  • Breast sensitivity

  • Acne

  • Ovarian cysts

  • In terms of copper IUDs, negative side effects "are limited to" pelvic pain and heavy periods

After seven years of pain — and after losing two jobs due to repeated use of sick leave, she said — Tessier started to wonder if her IUD was the cause of her symptoms. She wanted to take it out, just to check.

"I had to change gynecologists twice just to get it removed," she told HuffPost Québec.

Her doctors suspected she had endometriosis, and one wanted to operate on a possible mass on her uterus — even though Tessier asked them to remove her IUD first. In the pre-surgery evaluation in 2017, she reiterated her demand to her new gynecologist.

"I looked at her and said, 'I don't really want to get surgery, can we start by taking out my IUD?' I stood my ground, and she got angry. In the end, she took out the IUD, threw it at me, and left the room."

According to Karine, her relief was instant: "All of my symptoms disappeared within 24 hours. The dark cloud above my head was gone. I was so glad they listened to me!"

Familiar stories

Karine began doing research and discovered she wasn't the only patient who encountered resistance from their doctor when they wanted an IUD removed. She started a Facebook group called "Canadian victims of the Mirena IUD," and many familiar stories flooded in.

"Within 48 hours, I had more than 3,000 members. So many women were saying, "I also had these side effects, and I also had trouble getting my IUD removed.'"

Watch: What you need to know about IUDs. Story continues below.

Reliable birth control method

IUDs are considered the most reliable method of contraception, in part because there's no potential for human error — unlike the birth control pill, which has to be taken every day at the same time.

While unpleasant side effects are common in the first few months, it's rare for women with IUDs to continue to see them continue, said Isabelle Tardif of the Montreal Women's Health Centre.

"It does happen occasionally that women want to remove their IUD, but not very often," she said. "But, the best way for women to be able to tolerate the side effects is if they're informed in the first place, and if they know they can always come back to us to talk about it. Sometimes, people just need reassurance."

"Ninety-four per cent of patients who have tried it are satisfied," said Dr. Marc-Yvon Arsenault, OB/GYN at LaSalle Hospital.

IUDs are actually more reliable than getting your tubes tied, according to Arsenault and Simard. That's probably why some doctors seem reluctant to give up on them, Tardif said.

According to the Association of Obstetricians and Gynecologists of Quebec, about half of all pregnancies in the province are unplanned. Of those, about 30 per cent are voluntarily terminated.

Intense pain

Geneviève McCready's problems also began with the insertion of her second IUD. "For six years, it all went well. The only side effect was that I stopped getting my period. I loved it!" said the nurse-in-training, who worked in the sexual health sector for nine years.

But about a year after she got her second Mirena, McCready started experiencing intense pain in the nerve endings in her face, which prevented her from studying for her nursing doctorate and working on her research. And between the episodes, which usually lasted about a week, she suffered major migraines and was tired all the time. She also developed cysts under her skin.

"I'm a person who always has a lot energy, generally," she said. "But even when I went to bed early, I was always tired. I was also really irritable — I had no patience with my kids, and it affected our family life. I always felt depressed ... I felt like it was connected to my physical symptoms. And I noticed I was gaining weight, I always felt bloated."

It was while reading accounts of women in France who launched a class-action lawsuit against Bayer that she started to recognize her symptoms. She also read that some women encountered resistance from their doctors when they wanted their IUDs removed.

McCready went to see a nurse practitioner who specializes in gynecology. "I explained that I understood the IUD wasn't necessarily the issue, but that I needed to try removing it. There was no resistance."

After her IUD was removed, the change was "immediate," she said. "The next day, I had so much energy I felt like I could run a marathon!"

A longstanding myth

There are still many unfounded myths related to IUDs, say doctors. The most common: a woman can only get an IUD if she's already had a child.

"That's completely false," said Dr. Arsenault. "An IUD is a good option for a young student, for example, who doesn't want to have children in the next five years."

Resistance

Joëlle Burelle had noticed a few unpleasant symptoms in the two-and-a-half years since her Mirena IUD was inserted: hair loss, weight gain, acne. But her doctor convinced her to keep it, assuring her that her symptoms came from hormonal changes that were normal for women in their 30s.

"To him, what I was describing couldn't be caused by an IUD," Burelle recalled. "And it's true that there was no way of knowing without removing it."

She wouldn't say he was pushy, but she said he "strongly" suggested an IUD as a contraceptive method after the birth of her second baby, without offering other options. She still has her IUD.

Sonia Dupont, on the other hand, was forced to go to the emergency room to get her IUD removed, because her gynecologist wouldn't move up the date of her follow-up appointment. Chronic fatigue, vertigo, dizziness — she just couldn't handle it anymore.

Doctors like that "imply a belief that women aren't capable of assessing the symptoms that are happening to their own bodies. It's unacceptable."Isabelle Tardif, Montreal Women's Health Centre

These women's experiences dealing with unhelpful doctors are "shocking," said Isabelle Tardif, a nurse and the director of the Montreal Women's Health Centre.

Doctors like that "imply a belief that women aren't capable of assessing the symptoms that are happening to their own bodies. It's unacceptable."

"It's not up to you to judge if a woman is right or wrong" about the source of her pain, she added. "Because in the end, that means you don't believe her. And then the woman feels judged."

The Montreal Women's Health Centre has a very different approach when it comes to handling contraception.

"We give patients all the information about the different methods, and they choose the one they prefer. We explain the possible side effects. For us, the more information a woman has, the more likely she'll make the right decision for herself."

"But sometimes, I forget that we're the exception," Tardif said, adding that she's spoken with women who had IUDs who didn't even know they came in two different types (copper and hormonal).

Watch: The surprising history of the IUD. Story continues below.

Benefits outweigh the risks: Health Canada

In the last five years, Health Canada has seen an increase in reports of unpleasant side effects from the Mirena IUD.

The organization evaluated both the hormonal and the copper IUDs and concluded that the benefits outweigh the risks.

Health Canada said it will continue to systematically evaluate the safety of both kinds of IUDs, as it does "for all health products in the Canadian market, in order to identify and evaluate potential risks. Health Canada will take the appropriate measures if new health risks are identified."

DIY

Science journalist Marianne Desautels-Marissal knew all about the possible side effects of the copper IUD — intense pelvic pain and very heavy periods — when she got hers. After having a Mirena for five years without any problems, she wanted to try the copper IUD, enticed by the idea that she wasn't sending hormones into her body. She came to bitterly regret that decision.

Her copper IUD caused menstrual cramps so intense that they confined her to bed for half a day every month, in addition to intense bleeding. After enduring it for two years, she finally decided to take it out herself.

Desautels-Marissal documented her experience in a piece published on the online magazine Urbania. She recalls that the morning she made the decision, she was doubled over in pain "to be point of nausea, completely overcome by cramps."

Courtesy Marianne Desautels-Marissal
Marianne Desautels-Marissal removed her IUD by herself, at home.

She said that it was a liberating experience for her (though she definitely wouldn't recommend anyone else attempting a DIY IUD removal).

"The pain stopped immediately," she said. "It would have taken too long to wait for a doctor's appointment. I had read about how it was possible to do it yourself. I just started pulling, and it came out on its own."

She insists that she's not trying to encourage any other women to remove their IUD by themselves; it's always better to seek help from a medical professional.

But Marianne is interested to read about other people's experiences with IUD pain. She said she hates the fact that women's pain often isn't taken seriously, a conclusion validated by several different studies.

'It's her body. She's the boss'

Dr. Fabien Simard, president of the Association of Obstetricians and Gynecologists of Quebec, said he's "surprised" to hear about these experiences. For one thing, gynecologists must inform their patients about the possible side effects of both the hormonal and copper IUDs, he said.

"Treatment is individualized for each patient," he said. "We have to evaluate which option is best for a woman depending on her conditions."

If a woman showed symptoms of depression after the insertion of an IUD, "we would take it out right away," he said. "Those side effects are rare, but they are documented. I don't understand why a doctor wouldn't take out an IUD if a patient complained about their symptoms."

Jasmin Merdan via Getty Images
A doctor holds an IUD, a reliable form of birth control that can come with unpleasant side effects.

In the case of irregular bleeding or tolerable pain, a doctor might suggest that a woman wait a few months to see if the issue resolves itself, he said. "We wouldn't try to convince her — it's more of a discussion. Above all, we're there to give advice."

And he insisted that, ultimately, it comes down to the patient's decision. "If she wants to take it out, even if it's just because she's not 'feeling it,' we'd take it out right away. It's her body. She's the boss!"

He said he believes "the majority of gynecologists will listen to their patients."

It gives you the impression that doctors listen more to pharmaceutical companies than they do their patients.Karine Tessier

But Karine Tessier said it's clear many in Quebec's medical establishment don't listen to women. Incidentally, the doctors who ordered multiples tests for her in the last few years are pleased to hear her symptoms resolved themselves, she said. "But they don't think it has anything to do with the fact that I removed my IUD. They think it's in my head," Tessier said.

"It gives you the impression that doctors listen more to pharmaceutical companies than they do their patients."

Two years after her IUD was removed, she's still scared of any hormonal contraceptive method. She considers the whole painful episode a "tsunami" that hit her family.

And more than anything, she thinks it all could have been avoided, if she had just been warned and listened to.

This story originally appeared on HuffPost Québec. Translation by Maija Kappler.

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