A woman says she hasn’t had sex with her partner in a year due to the painful, yet common condition endometriosis.
Laura Debney, 37, has suffered with painful periods since she was 11 years old but she wasn't diagnosed with the condition until she was 26.
Endometriosis is a painful condition that sees excess tissue grow on the outside of the uterus in places such as the fallopian tubes or the ovaries. It is estimated to affect one in 10 women of reproductive age in the UK.
Endometriosis has no cure and Debney says before she was diagnosed, the pain would regularly spread until her whole body was in agony "all the time".
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"When I first started my period, it would feel like someone had punched all the way through me to my back," Debney explains.
"I was told the pain was normal for girls, and I just 'wasn't used to it'. When I had surgeries after being diagnosed, the doctors found all my organs were bonded together.
"They said it was like they were tangled up in a sticky cobweb - they tried to remove all the adhesions, but it just grew back again."
Debney adds that, as time has gone on, the pain has just become "greater and greater" and now is permanently there.
"My boyfriend and I haven't had sex in over a year because I'm always in pain," she explains.
Debney, a civil servant from Cardiff, says she can only work for five hours per day due to the pain and she struggles to sleep at night.
When she was 23 she was at work when the pain became so intense she felt like she was going to pass out.
"I bled through a tampon and a towel, and onto my clothes," she says. "I walked out and never came back."
Debney says it took "years" to get a gynaecologist appointment before a laparoscopy in 2013 finally confirmed she had a severe case of endometriosis.
A laparoscopy is a surgical procedure that sees a small camera inserted into a woman’s pelvic organs to identify if there is any extra tissue that has grown which is a sign of endometriosis.
Since her diagnosis, Debney has had multiple surgeries to remove the excess tissue but it has always returned.
After another surgery in 2019, doctors found that the tissue had spread beyond her reproductive system to her bowels, which meant that even a full hysterectomy - where the uterus and other reproductive organs are removed - wouldn’t fix the pain.
"I don't meet the criteria for disability benefits, so financially I'm in a lot of debt at the moment," she adds.
Debney has been in a relationship with her partner Adam for a decade, but says she now finds sex too painful.
"At the beginning of the relationship I could make the best of it but as it got worse I had to be honest about the pain I am in," she explains.
"Now he knows, he finds it difficult because he doesn't want to cause me pain - but I do miss sex.
"Whenever we do have sex, I end up bleeding and with a UTI [urinary tract infection]."
Debney wants to spread more awareness of the condition and thinks "a lot more women have endometriosis than we know about".
"Like me, they were probably told to 'stop being ridiculous' because 'we all have pain’," she adds. "People don't see the reality of the condition, and it is so grim," she says.
Endometriosis: the facts
It is unknown what causes endometriosis, but the NHS says that some theories include that the condition could be down to genetics, a problem with the immune system, or endometrium cells being spread throughout the body in the bloodstream.
Common symptoms of endometriosis include pain in your lower stomach or back that gets worse during your period, or period pain that stops you from doing normal activities.
Pain after sex is another symptom, as are fertility issues, heavy bleeding during your period and pain when going to the toilet while on your period.
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If you have any of these symptoms you should book an appointment with your GP who can refer you for a laparoscopy which is the only way to receive an official diagnosis.
Because endometriosis is difficult to diagnose, the NHS recommends using Endometriosis UK’s pain and symptom tracker to keep note of all the symptoms you experience and take this to your doctor.
How is endometriosis treated?
While there is no cure for endometriosis, there are treatments that can help relieve the symptoms including:
certain hormonal contraceptives - including the combined pill
the contraceptive patch
an intrauterine system (IUS)
medicines called gonadotrophin-releasing hormone (GnRH) analogues.
In certain cases those living with the condition can have surgery to cut away patches of endometriosis tissue.
And in severe cases you can have an operation to remove part or all of the organs affected by endometriosis, such as surgery to remove the womb, a hysterectomy.
Endometriosis UK provides a huge wealth of support and information in addition to a helpline, web chat and online community.
Additional reporting SWNS.