FOR ten years, Rhyannon Lewis desperately searched for an answer to her crippling pain - which caused her physical and mental turmoil.
The former carer, 25, from Helston in Cornwall, had been in and out of hospital and received multiple misdiagnoses for a decade before eventually being told she had endometriosis.
The agonising condition, which affects one in ten women, is caused when tissue from the womb starts to grow on other pelvic organs.
As well as extremely heavy periods, endometriosis can cause debilitating pain and sometimes infertility.
Rhyannon is now sharing her story to raise awareness for the agonising condition, which has left her unable to get out of bed or go to work.
Rhyannon, from Cornwall, first started displaying symptoms of endometriosis when she was 13.
She started her periods early and was forced to go on a specialist tablet due to the flow and pain they caused her.
However, the tablets did nothing for Rhyannon and the symptoms continued to escalate.
When she turned 15, her mother started taking her for routine scans to try to determine what was wrong - but each of them came back clear.
Rhyannon told Cornwall Live: "In the final year of school, I stopped going for six months because of my mental health.
"I just couldn't understand the pain. Absolutely nobody understood what it was and I remember just being given depression tablets."
And she began to struggle having sex with her partner because she would bleed so much.
I just couldn't understand the pain. Absolutely nobody understood what it was and I remember just being given depression tabletsRhyannon Lewis
She said: "I had a partner around that time and having sex was always extremely painful.
"I used to bleed and it made me terrified.
"People still tell me all the time that they really enjoy sex and I'm just scared to physically go forward with it."
Rhyannon continued to desperately search for answers but repeatedly came home from hospital with false diagnoses.
In particular, last September she was told her endometriosis was pelvic inflammatory disease.
She described the bloating in her stomach this time as worse than she had ever experienced before, accompanied with "the most intense pain" across her body.
It was around this time that she was told her uterus was actually heart-shaped and one ovary might have been bigger than it should have been.
This discovery led to a diagnosis of pelvic inflammatory disease and also to the heartbreaking news that the probability of her having biological children of her own was extremely unlikely.
"I just crumbled," she said.
"I didn't know how to move forward.
Symptoms of endometriosis
Endometriosis is where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb - building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
That can lead to infertility, fatigue, bowel and bladder problems, as well as really heavy, painful periods.
It affects one in ten women in the UK.
- Painful, heavy, or irregular periods
- Pain during or after sex
- Chronic pain
- Painful bowel movements
The cause of endometriosis is unknown and there is no definite cure.
According to Endometriosis UK, it takes over seven years on average for women to finally receive a diagnosis.
It's estimated that up to 50 per cent of infertile women has the condition.
Source: Endometriosis UK
"Not only was I told I would probably never have children but I had this feeling that it wasn't actually pelvic inflammatory disease because the pain other women were experiencing was just not what I was experiencing.
"My pain can start in my cervix, then filter into my womb and my back and then I can even feel it in my lungs."
Rhyannon was soon overcome with the feeling that her diagnosis was not right and she began looking into endometriosis.
She said she had never heard of the condition before but after researching the symptoms, she thought it was likely she could have it.
And she reached out to UK Endometriosis Support & Awareness who helped her with her diagnosis.
Rhyannon was finally told she did have endometriosis and has since had an operation to have some of it removed.
She said: "It took a decade to be diagnosed with endometriosis and even now I have my diagnosis and they have removed a lot of it but I am suffering a lot more than before the operation.
"I never used to get ovulation pain and two weeks after my period now I get the strongest pains.
"There are so many symptoms that people just don't talk about. I frequently need to go to the bathroom and even suffer with bleeding from my bottom.
"The ovulation pains I get are just as intense as a flare up, which happens two to three times out of the month and it is not just physical pain, I suffer from dreadful fatigue.
"I'm often exhausted and my body just doesn’t want to co-operate."
Rhyannon has been told now that if she wants children she would have to start planning for it before she is 26 years old, which is less than a year away.
However, she says with the pain she is still suffering and where she is at this time in her life, that this is just not realistic.
She has also been signed off from her job as a carer as the pain is so agonising.
I live in fear that I am going to have to spend another decade trying to get the help I needRhyannon Lewis
Rhyannon said: "It is very dark days at the moment and I can feel very vulnerable.
"I live in fear that I am going to have to spend another decade trying to get the help I need."
Knowing that she might never have children is also difficult for Rhyannon, but she says it is even more painful that her hospital appointments are held on the maternity block.
She says she also struggles with the fact people often think her illness is all "in her head".
Rhyannon added: "It is hard when you know there is something wrong with you but people think it is in your head.
More on endometriosis
"That is how I have had to live my life and on occasion I have gone months without getting out of bed.
"I’ve got to be positive or it will defeat me. If you are in pain, get that second opinion because it matters.
"You know your body more than anyone else and if it’s not working properly - you know."