MOST 21-year-olds are falling in love, making new friends and working out what they want to do with their lives.
But Phoebe Snedker is coping with “excruciating” pain and debilitating bladder issues because of a condition that went undiagnosed for years.
Phoebe has had to opt for medically induced menopause to curb symptoms of endometriosis, while she continues to wait for surgery to find out whether her bladder is also affected by the painful condition.
She's calling for more awareness of the condition, and for those affected to not have their symptoms ignored or be told they aren't "serious" enough, like 30-year-old endometriosis awareness campaigner, Aubrion Rogers, who died from complications related to her condition in January.
Endometriosis can affect women of any age and is when tissue similar to the lining of the womb starts 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 issues - and there is currently no cure.
“There are good days and bad days,” says Phoebe. “The discomfort is constant. I have to take medication for my bladder every day.
“When it's bad, I can't do anything. It's really painful.”
Endometriosis has also affected her sex life.
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“When I was younger, seeing all of my friends being like, ‘Oh, sex, this new, exciting thing’, - it was just so painful for me,” she remembers.
The Northampton born student has been with her partner for five years now and says sex “is definitely something we’ve worked on - just doing different positions can make a world of difference, because it's not putting pressure on certain areas that hurt me.”
She says it can still be difficult, for both of them.
“Sex is a big part of a relationship, and when you know you're causing your partner pain, it puts him off of doing it as well,” she notes.
Right now, “there's no cure for endometriosis, but there are certain things you can do to keep it under control, or keep your symptoms at bay,” says Phoebe.
In terms of managing her physical symptoms, she relies on prescription painkillers and heat therapy (like hot water bottles) but this has caused its own issues.
“I was relying so much on heat therapy through lockdown, because I couldn't get appointments to see my GP to get pain meds, and basically, from where I've been repeatedly using hot water bottles, it causes a kind of heat rash, but more intense.
“I had lots of red scarring on my stomach, which is starting to go down now.”
She’s started limiting how much she uses heat therapy but says it’s difficult: “Do you want a stomach that's really red, or do you want pain?”
FOBBED OFF
Phoebe's symptoms began when her period started, aged around 12-13.
She had “very” heavy periods and would double up with tampons and pads and still bleed through, and experienced really bad pain as well.
“The best way I could describe it is as a sort of pressure inside, just pushing everything,” she says.
Phoebe saw numerous doctors, hoping for a diagnosis that would explain what she was going through, but she kept being told: “You're a teenager, it's normal to have irregular periods.”
One doctor even prescribed a laxative, “because they thought maybe it was just that I was constipated and that's what the pain was.”
Pushing for answers was “exhausting” remembers Phoebe, who was eventually given birth control to manage the heavy bleeding.
“For people that don't have endometriosis but still have quite heavy periods, that can help, but my pain just kept getting worse.”
Finally, aged 18, half a decade from the onset of symptoms, she was seen by the gynaecology department at her local hospital in Northampton.
“They gave me an internal scan, and found a polycystic sort of growth on my left ovary.”
Phoebe’s doctors thought the cyst could be a “one-off” and decided to operate - it was during surgery that they discovered endometriosis on Phoebe’s left ovary.
Notoriously tricky to diagnose and rarely picked up on scans, endometriosis is often only diagnosed following laparoscopic surgery.
Need to kow: Endometriosis
ACCORDING to Endometriosis UK, the condition sees “cells similar to the ones in the lining of the womb grow elsewhere in the body.
“These cells react to the menstrual cycle each month and also bleed.
“However, there is no way for this blood to leave the body.
“This can cause inflammation, pain and the formation of scar tissue.
“Endometriosis can have a significant impact on a person's life in a number of ways, including:
- Chronic pain
- Fatigue/lack of energy
- Depression/isolation
- Problems with a couple’s sex life/relationships
- An inability to conceive
- Difficulty in fulfilling work and social commitments
For more information on endometriosis and treatment options, as well as support, visit www.endometriosis-uk.org.
And if you are concerned about any symptoms, always speak to your GP.
Having an answer after so many years of pain was a “relief” says Phoebe, especially considering how much she’d had to fight to be taken seriously.
“It was hard when people just thought I was being dramatic,” she says.
“It was quite hard to have to keep pushing and pushing and having very little support.”
Being told it was endometriosis “just made so much sense” she says, particularly as someone on her mum’s side also has the condition - it tends to run in families.
She just wishes she’d been listened to sooner. “I think a lot of teenagers are treated like they're too young to have it, when in reality, that's when it starts to show.”
After that initial surgery though, Phoebe was discharged without a treatment plan, other than pain relief.
Since the pandemic kicked in, and access to GP appointments and further surgery options reduced dramatically, Phoebe’s symptoms have “kept getting worse and worse, to the point that I'm at now” where she still suffers “excruciating” pain and bladder problems.
Currently at Birmingham University, she’s been on a wait list for laparoscopic and cystoscopic (to look at the bladder) surgery for two years.
Phoebe’s bladder pain and discomfort really restricts her day-to-day life, from her relationships, to going out and spending time having fun with friends.
“A night out can cost me a week of pain, just because of how much it irritates my bladder,” says Phoebe, explaining that alcohol can really trigger her endometriosis.
And even then, she can do everything ‘right’, avoid certain foods and alcohol, “and still get a flare up of pain. So it's very frustrating.”
Living with so many unknowns has undoubtedly affected her mental health.
“I've had a relatively okay few days to be honest, the pain has been bearable, but for all I know, this time next week, it could be really bad again, and I wouldn't know why.
“It's definitely very intense and there’s just the constant anxiety of, ‘Is anything going to happen? If I book this in, am I going to be okay?’”
HOT FLUSHES
Now Phoebe has also opted for medically induced menopause and has to visit the hospital once a month for an injection to “keep my ovaries turned off”.
Doctors told her it was her best course of action to prevent her symptoms from getting worse while she waits for further surgery.
“A lot of my family were quite upset that I chose that decision, because obviously, it is quite extreme,” says Phoebe, who was just 20 when she went into menopause.
“I understand the upsetting idea of it, but at the same time, that was my best chance of getting my pain reduced and stopping it from spreading.”
Phoebe is now taking Hormone Replacement Therapy (HRT) to manage her menopause symptoms.
“I was suffering a lot,” she explains. “I'd get thrush quite regularly and I was getting hot flushes all the time, waking up in hot sweats.
“As a 20-something-year-old, that's not quite how you expect your 20s to be going.”
She admits it was a very “tough decision” to make, but because of the medication she’s on, the medically induced menopause is reversible.
“So when I decide I want to start trying for children, I can do that under the supervision of the hospital.”
Phoebe is grappling with wider worries about having children though.
“Endometriosis is something I wouldn't wish on anyone,” she says, “so that comes into play with the whole fertility question anyway: even if I can have my own children, do I want to risk passing it on?”
LACK OF SUPPORT
Phoebe is speaking out about her experiences with endometriosis because “as much as there's no cure, there's also no real support in place either” and this needs to change.
In terms education, “there should definitely be more teaching girls what is normal and what isn't,” says Phoebe “I spent most of my teenage years thinking it was normal that my periods were that painful, because people were like, ‘Oh, you know, it's just periods and you're young, you'll get used to them’.
“You shouldn't have to miss school because you're in that much pain.”
Phoebe wants better resources and information on endometriosis to be widely accessible to everyone, and for people dealing with the condition to have more support.
She says having endometriosis can be quite “isolating” at times, but talking and sharing with others can really help.
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But Phoebe is angry. Anyone dealing with endometriosis deserves more support, quicker diagnosis and hope that more research will be done to find a cure,
"More needs to be done to treat the condition," she says. "Simply ignoring my condition because it's not 'serious' enough cannot be acceptable anymore."
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