I have scars from pressing heating pads to my stomach to ease the agony of endometriosis.

MOST 21 year olds fall in love, make new friends and decide what they want to do with their lives.

But Phoebe Snedker is coping with “excruciating” pain and debilitating bladder problems from a condition that went undiagnosed for years.

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Phoebe waited two years for further surgery to investigate the excruciating pain in her bladder, believed to be caused by endometriosis.Credit: Phoebe Snedker
Phoebe Treats Her Bladder Pain And Ovarian Endometriosis With Heat Therapy, Which Left Her With Red Welts On Her Stomach.

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Phoebe treats her bladder pain and ovarian endometriosis with heat therapy, which left her with red welts on her stomach.Credit: Phoebe Snedker

Phoebe has had to opt for medical menopause to curb her endometriosis symptoms while she continues to wait for surgery to find out if the diseased condition is affecting her bladder.

She calls for greater awareness of the disease, as well as for those who have been affected, so that their symptoms are not ignored or told they are not “severe” enough, like 30-year-old endometriosis awareness campaigner Aubrion Rogers, who died of complications associated with endometriosis. her condition in January.

Endometriosis can affect women of any age when tissue similar to the lining of the uterus begins to grow in other places, such as the ovaries and fallopian tubes.

It causes a range of symptoms, from severe pain and nausea to fertility problems, and there is currently no cure.

“There are good days and bad days,” says Phoebe. “Discomfort is constant. I have to take medicine for my bladder every day.

“When I feel bad, I can’t do anything. It really hurts.”

Endometriosis has also affected her sex life.

“When I was younger, seeing all my friends say, ‘Oh, sex, this new, exciting thing,’ it hurt me so much,” she recalls.

The Northampton native has been living with her partner for five years and says sex “is definitely something we’ve been working on – just using different positions can make a huge difference because it doesn’t put pressure on certain areas that hurt me.”

She says it can still be difficult for both of them.

“Sex is an important part of a relationship, and when you know that you are hurting your partner, he also refuses to do so,” she notes.

Right now, “there is no cure for endometriosis, but there are certain things you can do to keep it under control or keep the symptoms at bay,” says Phoebe.

As for treating her physical symptoms, she relies on prescription painkillers and heat therapy (such as heating pads), but this has brought its own problems.

“I was so reliant on heat therapy because of the blockage because I couldn’t make an appointment with my therapist to get painkillers, and basically because I repeatedly used heating pads, it causes a kind of prickly heat. but more intense.

“I had a lot of red scars on my stomach that are starting to fade now.”

She has begun to limit the use of heat therapy, but says it’s difficult: “Do you want your stomach to be really red, or do you want pain?”

DECEIVED

Phoebe’s symptoms started when she got her period around the age of 12-13.

She was having “very” heavy periods and doubled over with tampons and pads and was still bleeding and in a lot of pain.

“I can best describe it as a kind of pressure inside, just pushing everything around,” she says.

Phoebe went to many doctors, hoping for a diagnosis that would explain what she was going through, but she was constantly told: “You’re a teenager, irregular periods are normal.”

One doctor even prescribed a laxative “because they thought maybe I was just constipated and that was what hurts.”

The rush to get answers was “tedious,” recalls Phoebe, who was eventually given birth control to stop the heavy bleeding.

“People who don’t have endometriosis but who have fairly heavy periods may find it helps, but my pain only got worse.”

Finally, at the age of 18, five years after the onset of symptoms, she went to the gynecology department of the local hospital in Northampton.

“I had an internal scan and found a polycystic mass on my left ovary.”

Phoebe’s doctors thought that the cyst might be a “one-off” and decided to operate – it was during the operation that they discovered endometriosis on Phoebe’s left ovary.

It is well known that endometriosis is difficult to diagnose and is rarely detected on a scan. Often, endometriosis is diagnosed only after laparoscopic surgery.

Need to Know: Endometriosis

ACCORDING TO Endometriosis UK, in this condition “cells like those found in the lining of the uterus grow in other parts of the body.

“These cells respond to the menstrual cycle every month and also bleed.

“However, this blood has no way to leave the body.

“It can cause inflammation, pain and scar tissue formation.

“Endometriosis can have a significant impact on a person’s life in several ways, including:

  • chronic pain
  • Fatigue/lack of energy
  • depression/isolation
  • Problems in the couple’s sex life/relationships
  • Inability to conceive
  • Difficulties in fulfilling work and social obligations

For more information about endometriosis and treatment options and support, visit www.endometriosis-uk.org.

And if any symptoms bother you, always talk to your healthcare provider.

Phoebe says it was “a relief” to receive an answer after so many years of pain, especially considering how much she had to fight to be taken seriously.

“It was hard when people just thought I was being dramatic,” she says.

“It was pretty hard to keep pushing and pushing with very little support.”

When she said it was endometriosis, it “made sense,” she says, especially since someone on her mom’s side also has the condition – it tends to run in families.

She just wants to be heard before. “I think a lot of teenagers are treated like they’re too young to have it, when in fact it’s starting to show up.”

However, after this initial surgery, Phoebe was discharged with no treatment plan other than pain relief.

Since the pandemic began and access to GP appointments and further surgical options has been drastically reduced, Phoebe’s symptoms have “become worse and worse, to the point where I am now” where she is still suffering from “excruciating » Pain and bladder problems.

Currently at the University of Birmingham, she has been on a waiting list for two years for laparoscopic and cystoscopic (to examine the bladder) surgery.

Phoebe’s bladder pain and discomfort really limits her daily life, from her relationships to going out and having fun with friends.

“A night walk can cost me weeks of pain just because it irritates my bladder,” Phoebe says, explaining that alcohol can actually trigger her endometriosis.

And even then, she can do everything “right,” avoid certain foods and alcohol, “and still experience bouts of pain. So it’s very frustrating.”

Living with so many unknowns has undoubtedly taken a toll on her mental health.

“Honestly, I had a relatively normal few days, the pain was tolerable, but as far as I know, at this time next week, things can be very bad again, and I don’t know why.

“It’s definitely very intense and there’s just constant anxiety, ‘Is anything going to happen?’ If I book this, will I be ok?”

Tides

Now Phoebe has also opted for medical menopause and has to visit the hospital once a month for an injection to “keep my ovaries off.”

The doctors told her that this was the best way to prevent her symptoms from worsening while she waited for further surgery.

“Many members of my family were very upset that I made such a decision, because, obviously, it is quite extreme,” says Phoebe, who was only 20 years old when she went through menopause.

“I understand the frustrating thought of it, but at the same time it was my best chance to reduce my pain and stop it from spreading.”

Phoebe is currently taking hormone replacement therapy (HRT) to manage her menopausal symptoms.

“I suffered a lot,” she explains. “I had thrush quite regularly, I had constant hot flashes, I woke up in a hot sweat.

“At 20 plus, you don’t quite expect your 20s to go by like that.”

She admits it was a very “difficult decision” but because of the medication she is taking, medical menopause is reversible.

“So when I decide I want to start trying for kids, I can do it under hospital supervision.”

However, Phoebe struggles with wider concerns about children.

“Endometriosis is something I wouldn’t wish on anyone,” she says, “so it’s all about fertility anyway: even if I can have my own children, do I want to risk passing it on?”

NO SUPPORT

Phoebe talks about her experience with endometriosis because “even though there is no cure, there is no real support” and this needs to change.

In terms of education, “there definitely needs to be more teaching of girls about what is normal and what is not,” says Phoebe. “For most of my teenage years, I thought it was normal that my periods were so painful because people were like, ‘Oh, you know, it’s just your period and you’re young, you’ll get used to it.’

“You shouldn’t miss school because you’re in so much pain.”

Phoebe wants the best resources and information about endometriosis to be widely available to everyone and people with the condition get more support.

She says that having endometriosis can be quite “isolating” at times, but talking and connecting with others can really help.

But Phoebe is angry. Anyone dealing with endometriosis deserves more support, faster diagnosis, and the hope that more research will be done to find a cure.

“More needs to be done to treat this condition,” she says. “Simply ignoring my condition because it’s not ‘serious’ enough can no longer be acceptable.”

Phoebe Hopes Sharing Her Story Will Raise Awareness About Endometriosis So More Women Can Get The Help And Support They Desperately Need.

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Phoebe hopes sharing her story will raise awareness about endometriosis so more women can get the help and support they desperately need.Credit: Phoebe Snedker

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