According to the NHS, it’s one of the top 20 most painful conditions to live with
Countless doctors, GPs and gynaecologists – among many other professionals – dismissed me for 11 years, telling me my pain was probably in my head and just a case of being too stressed. However this month they discovered I have an incurable condition – and it’s one that the NHS ranks among the 20 most painful conditions in the world.
I was just 16 when I first told my GP about my symptoms, but it wasn’t until this month, at 27 years old, that I finally got some answers. You might have heard of endometriosis.
This is exactly what I have, and sadly, it’s something I’ll live with for the rest of my life. There’s no cure, and for many of us, the treatment options are few and far between.
Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue.
Common symptoms include:
- Pelvic pain
- Painful periods that interfere with everyday life
- Heavy menstrual bleeding
- Bloating
- Pain during or after sex
- Painful bowel movements/when having a poo
- Pain when urinating/peeing
- Difficulty getting pregnant – up to 70% of those with endometriosis will be able to get pregnant naturally
- Fatigue, with one or more of the above symptoms
When I first asked for help, the GP outright dismissed me, saying I’d “grow out of” the problems I was facing. They brushed it off as nothing more than painful periods, and I quote, “some women just get it worse than others.”
After that, like so many others, I was handed the pill and completely abandoned to deal with it on my own. It was infuriating how casually they dismissed my pain.
Before I was diagnosed, several doctors told me my pain was caused by fibromyalgia, IBS, or a mental health condition. Throughout my decade-long struggle, I kept getting ‘normal’ or negative test results, including clear MRIs and ultrasounds. Even my inflammation markers were ‘normal’.
In 2021, I underwent a diagnostic laparoscopy (keyhole surgery) and was told I was “healthy” with “no evidence of endometriosis.” Leaving the hospital, I felt confused and embarrassed, convinced the doctors were right and that the pain was all in my head – or so I believed at the time.
This year, I was able to have surgery again, this time with an endometriosis specialist. For the first time in years, I woke up from surgery with an answer to my pain – it was endometriosis all along.
Over the 11 years I experienced symptoms and searched for answers, I was repeatedly gaslighted into believing the pain was all in my head. To make matters worse, the first surgeon missed my endometriosis, yet doctors wrote letters stating I didn’t have it and that I should stop questioning whether it was overlooked.
Eventually, I had my endometriosis lesions removed through excision surgery, which is considered the gold standard treatment for endo. The hope is that this will prevent the endo from growing back or at least slow its progression.
The reason I’m writing this is a simple one – to let others who are going through the same experience know that any pain during periods, as well as unexplained symptoms outside of your period, is not normal. It’s unfair for doctors to dismiss your pain to the point where you start doubting yourself and thinking it’s all in your head.
You know your own body and if you feel like something is not right, keep seeking another opinion until you get the help you need. You should cite the NICE guidelines which state: “Do not exclude the possibility of endometriosis if the abdominal or pelvic examination and ultrasound scan are normal, and recognise that referral may still be necessary even with a normal scan. [2017, amended 2024].”
It also recommends: “Refer women or people with symptoms of, or confirmed, endometriosis to a gynaecology service (see the recommendation on gynaecology services) for further investigation and management if:
- initial treatment is not effective, is not tolerated or is contraindicated, or
- they have symptoms of endometriosis which have a detrimental imp
- act on activities of daily living, or
- they have persistent or recurrent symptoms of endometriosis, or
- they have pelvic signs of endometriosis, but deep endometriosis is not suspected. [2017, amended 2024]
I was only able to have surgery with an endometriosis specialist because I was covered under someone else’s health insurance as a family member. Without that, I would have never had this chance. Otherwise, I might have gone my entire life without answers, assuming I didn’t have endometriosis.
It’s unfair that we have to spend money to see specialists and seek help from multiple people just to be taken seriously. Women’s healthcare urgently needs improvement, and the care for those with suspected or diagnosed endometriosis requires immediate and comprehensive reform.
According to Endometriosis UK, the gynaecology waiting list in England stands at 582,744. This is according to the latest NHS figures as of January 2025 with the report published on March 13, 2025.
In response to the latest government data on elective waiting times, Dr Ranee Thakar, President of the RCOG said, “As a gynaecologist, my clinic lists continue to grow and the women and people I see are experiencing worsening conditions and more severe symptoms. There are still over 580,000 women and people in England waiting to see a gynaecologist and this number isn’t falling quickly enough.
“1 in 10 women are estimated to be impacted by endometriosis and many of these women will need support from a gynaecologist to manage their symptoms. As a progressive condition, tackling long waiting lists is vital so we can start to help women sooner.
“We continue to call for urgent action to tackle the gynaecology wait list, which remains one of the longest. The UK government must act and directly tackle this is if they are to reach their targets.”
Emma Cox from Endometriosis UK said earlier this year: “This Endometriosis Action Month, we are calling on government to commit to reducing gynaecology wait times so that nobody has to wait in limbo, suffering sometimes debilitating symptoms, without access to the care that they need.
“These figures highlight the urgent need for the government to commit to reducing NHS gynaecology waiting times, and ensure that the NHS 10-year plan tackles the many long-standing issues facing patients with endometriosis and menstrual health conditions, including challenges in accessing gynaecology appointments and treatment. As part of this, the government must ensure the necessary NHS capacity to appropriately diagnose and provide treatment and pain management for those with experiencing symptoms or who have a diagnosis of endometriosis.
“Without access to treatment and management the disease may progress and even risk permanent organ damage, whilst symptoms can have an impact on all aspects of life including physical and mental health, work, education and relationships. Multiple visits to GPs, A&E and hospital with symptoms that aren’t recognised impacts on NHS time and resources. The economic case for investing in endometriosis care is clear – and is something the Government cannot afford to ignore.”