It’s notoriously difficult to get an endometriosis diagnosis. One in 10 women have the condition, but it takes an average of eight years to receive a diagnosis. If you’re Black, you’re in even worse trouble; research shows that Black women are 50% less likely to be diagnosed than white women – a process that can take up to 12 years.

With so many women left in limbo, seems like there’s not much we can do to speed things along or get adequate treatment. Even if you do get in front of a GP, it’s often a battle to get period problems taken seriously. Hertility founder Dr Helen O’Neill tells Strong Women: “We’ve heard countless stories of women being told that ‘periods are supposed to be painful’ or ‘you are just overreacting’. That’s just not OK.”

While we can’t control how GPs are trained or solve the NHS waiting lists crisis, how we talk in appointments and advocate for treatment is important. With that in mind, we’ve been speaking to a bunch of endometriosis survivors who successfully managed to get a diagnosis and push for help, to see what advice they’d give women starting on their own endo journeys.

Julianne Ponan MBE, founder of Creative Nature

What was your diagnosis journey like?

“It took me a long time to get diagnosed. Eventually, I went private to see about my painful periods and had an internal scan, which resulted in an endometriosis diagnosis. Because the symptoms can vary widely, they’re often mistaken for other conditions, and that makes it really challenging to get diagnosed.

“Unfortunately, I do think the process has become more difficult in recent years. There’s still a lack of awareness and understanding surrounding endometriosis, especially when it comes to diagnosing it promptly and accurately. However, there’s also been progress in terms of research and advocacy, which gives me hope for the future.”

What advice do you have for women just starting their endo journey?

“Trust your instincts and don’t be afraid to speak up for yourself. Use clear, descriptive language to communicate your symptoms to your healthcare provider, and don’t hesitate to seek a second opinion if you feel your concerns are being dismissed. Consider seeing a specialist in endometriosis, as they often have more experience diagnosing and treating the condition.

“I’d also suggest keeping a detailed symptom journal, documenting everything from the intensity of the pain to any patterns you notice. I brought my journal to my appointments and that helped me insist on further investigation when symptoms were being downplayed.”

Do you find anything useful for soothing endo symptoms?

“I use heat pads, hot water bottles and warm baths – I preferred to go down the more holistic route. I was told there was an option for surgery or pain medication, but taking Tramadol affected my ability to function and work. My doctor also offered to let me try different pills, but I have a lot of allergies, so decided against it.

“Exploring lifestyle changes such as dietary modifications, regular exercise and stress reduction techniques like yoga or meditation may help alleviate symptoms for some individuals, but it’s always best to consult with your healthcare provider before trying any new treatments or supplements.” 

Annabelle Jones, mum to Ottilie after working with TFP Fertility

How hard was getting a diagnosis?

“My periods have always been horrendous, but they’ve become drastically worse as the years go on. At first, I was told that I simply had ‘bad periods’ and was put on the contraceptive pill, despite being sick, being in excruciating pain and having periods so heavy I couldn’t leave the house. After almost 10 years of trying different pills and having various scans, I saw a private endometriosis specialist and was finally diagnosed. It felt like an endless battle.

“If I hadn’t had the opportunity to go private, I’m sure that I’d still be without a diagnosis now. It’s sad to think that it takes an average of eight years to be diagnosed – something I put down to a lack of awareness. Too many women are just being dismissed and are expected to live in excruciating pain each and every day. I know that pain, and I wouldn’t wish it on anyone.”

What’s the one piece of advice you’d give to a fellow endo warrior?

“Don’t give up. You know your body and you know if something is not right – don’t let anyone tell you otherwise. I pushed, even after having an operation, seeing multiple doctors, having multiple ultrasound scans and MRIs because I knew something had been missed. And guess what? I was right!

Sadly, a diagnosis doesn’t resolve a lot, as there isn’t currently a cure, but I did find it helped me mentally. It was just the reassurance that I wasn’t being pathetic or going crazy.

“Periods are nothing to be embarrassed about, and I think that has been my biggest learning. At the start, I was too reserved in GP appointments and couldn’t fully explain the extent of my bleeding and pain as I felt awkward sharing the embarrassing symptoms. It’s really important that you share every detail or you may be pushed to the side like I was.” 

Have any treatments or tweaks worked for you?

“I have tried various things over the years, and frustratingly not a lot works. Regular exercise in the lead-up to my period can help a little, but it has taken me many years to find exercise classes that I enjoy, so I understand it is often a chore rather than a hobby for some women. I never exercise on my period as I’m physically unable to do so; I just concentrate on the fact that better days are coming. You can be prescribed medication which do help with severe pain and bleeding, but for me, that only takes the edge off.” 

Natalie Meagan-Blake is the founder of Sunday Sip and a women’s health advocate

How did you advocate for yourself in pushing for a diagnosis?

I didn’t take the first opinion of the first doctor I saw. I sought out opinions from other professionals because I didn’t feel like my pain was being believed and didn’t feel listened to. I didn’t know that I had a right to ask for a second opinion at the time but pushed on anyway and it took seeing my fourth GP to actually get a referral.

What advice do you have for women just starting their endo journey?

You know your own body (if you don’t, then spend time getting to know it!), and you know if something’s wrong. If your GP isn’t listening to you, you can request to speak with someone else – so don’t be afraid to ask for that. It’s important to get answers. I’ve spoken to quite a few women who feel like they’ve been medically gas lit; they’ve gone home after an appointment and felt depressed about what’s been said to them. It’s really important to know that you can get a second, third, fourth opinion.

It’s also a good idea to journal and take videos and pictures of your pain and symptoms. I used to take pictures of my blood clots because my GP simply didn’t believe the descriptions I was giving. Having to provide proof can, in itself, be jading but unfortunately, we have to do that in order to be believed. 

We don’t talk enough about the mental aspect of endometriosis and for a long time, I struggled asking myself questions like: ‘Why me? Why can’t I be normal? Why is my body like this?’. That kind of stress can trigger the body to flare-up, which is something we want to avoid; it took me a while to stop saying those things to myself and to take it easier on my body. 

Finally, it’s important to flag that race can play a role in treatment and diagnosis. I went in, was told I had one condition but when I suggested something else might also be at play, was told that wasn’t the case. My GP told me that I couldn’t have this other condition – despite the fact that my mum also had it – because of the colour of my skin. People of colour do struggle to be taken seriously; we all deserve to have our symptoms acknowledged, regardless of background.

Gemma Barry is the founder of The Well Woman Project and author of Periods Aren’t Meant to Bloody Hurt

When did your endo journey begin?

“I had period pain and very heavy periods from the age of about 16. I was told to go on the pill but it didn’t really do much to stop either; I was often doubled over, having to wear tampons and pads at the same time. I also got severe bloating that would make me look eight months pregnant – so much so that people would offer me their seat on the Tube.

“As I got older my symptoms got worse, and after collapsing for the third time at home, I was given a CT scan which showed that I had a cyst the size of a cantaloupe melon. At this point, I went private because I was so sick and tired of waiting. My surgeon wanted to remove my ovary because I wasn’t planning on having children, but I asked her not to do that and make every effort to save it (it makes a difference through menopause). During this surgery they found endometriosis and after a later scan, was diagnosed with adenomyosis.”

“It was a very long process to get heard and diagnosed. It took nearly 20 years of being told to have children (I’m child-free by choice) and being misdiagnosed with kidney stones, IBS and appendicitis. I’m a former nurse, I know the system, and even I found it hugely frustrating to navigate and get in front of the right people. Where I was able to really help myself was always taking my partner with me. I would prepare him to ask the questions that I knew I would forget as the patient. I made sure I got printouts of my notes and scan results then and there, so I had a record of everything. So often we are told everything is fine, and as a lay person you take that for face value, but it’s important to know what tests have been done. I have been able to use all of that data to help myself.

“There are great doctors out there doing amazing things in a very broken system. But medicine still downplays the severity of hormonal and period conditions. Endo, like much of women’s health, is poorly researched and funded. But endo can impact any part of the body, including the brain and lunges – so it’s not just a disease of the pelvic space.”

What tips do you have for having a better endo experience?

“Educate yourself about your condition, read the books, read the studies and articles and become the expert so you can advocate for yourself. If you have laparoscopic surgery, for example, you need to make sure that the surgeon is doing excision not ablation. Ablation is like taking the leaves off a weed and leaving the roots in the ground – it will grow back. Excision takes the leaves and the roots, so it won’t grow back. If you are having someone rummage around in your body, you want to make sure they are doing the best by you. This isn’t standard practice and it should be.

“The Facebook group Nancy Nook is a fabulous global information hub where you can find yourself an endo-informed doctor. There are great resources out there, but you need to be a detective because these things won’t be given to you by your healthcare provider.

“For appointments, take someone with you. If you can’t do that, record the appointment and prepare questions so you get all the information possible out of every appointment. Be forthright in getting a referral to a consultant of your choice or a gynaecology referral. Don’t waste your time banging on the door of your GP – you need to be in front of an expert. Trust your instincts. Periods aren’t meant to hurt – it’s that simple.” 

Mollie Davies, endo and PMDD survivor and freelance writer

What was your diagnosis journey like?

“Getting my diagnosis for endometriosis was a hard, hard slog. I started suffering with excruciating periods at about age 14. I spent years at the GP trying every kind of contraceptive and feeling a huge impact on my hormone levels as a result. I pleaded with various doctors for pain meds and to be referred to gynecologists. After about five years I was finally taken a little more seriously, but the GP lost my referral. Eventually, after missing loads of school, having to change pads every 30 minutes and starting to pass decidual casts (when your uterine lining sheds all at once), my mum paid for me to see a private doctor. This doctor diagnosed me with menorrhagia (heavy bleeding) and referred me back to the NHS where I was scanned and told that I didn’t have endometriosis.

“I just knew that diagnosis (or lack thereof) wasn’t right. In the end, my mum’s private health insurance provided a lifeline, and I kept pushing the private consultant for surgery. Eventually, 12 years after first seeing a doctor, I was proved right. I did have endometriosis.”

What advice do you have for women just starting their endo journey?

“We shouldn’t need to prove anything, but until things change, keep a diary and note everything down. You can’t overshare; your GP needs to know every single thing about how endometriosis impacts your skin, mental health, relationships, studying, eating habits, exercise, etc.”

Do you find anything useful for soothing endo symptoms?

A great hot water bottle can make a difference – I like YuYu’s wrap-around options. I also take JSHealth vitamins; their magnesium blend helps soothe aching legs.”  

Michelle Leivars is a mentor for female entrepreneurs

When did your endo journey begin?

“My endo journey really began after the birth of my eldest daughter in 2004. I’d always struggled with period pain, but postpartum I knew something wasn’t right. For four years I tried to get help from my GP – only to be told that I had IBS, a pulled muscle or that it was all in my head. I was in so much pain that I’d often have to crawl up the stairs rather than walk.

“Over the years, I passed out from the pain and was taken to hospital in an ambulance a few times but no further investigations were ever made. It was only in 2009, after telling my GP that I couldn’t take it anymore, that she referred me to gynaecology. The consultant listened to my history and booked me in for a laparoscopy and left ovary removal. Endometriosis was never mentioned, and I had a pretty traumatic post-surgery experience when it turned out that a screw had been left inside me and was trying to force its way out!

“At one point, I had endo on my bladder and bowel. Every time it spread, it was excised and I was told I’d get some relief – but it always returned a few months later.”

What treatments have you tried?

“I’ve tried Zoladex injections, artificial menopause, trials of medication. Following the birth of my second daughter in 2013, I had the coil fitted to deal with the pain and eventually had a sterilisation procedure. Two years later, I was passing huge clots again, which my GP sent off to the lab. The results remarkably said that I’d been pregnant and was having a miscarriage. It was such a shock; I found myself grieving for a child that I never knew I could have had.

“Aged 29, I decided to go ahead with a hysterectomy. A week after surgery, my GP phoned to tell me that my ‘pregnancy’ sample slides had been re-examined and that they’d now concluded it hadn’t been a miscarriage after all. I’d spent a year grieving beating myself up for potentially causing the loss by taking painkillers – only to find out that that hadn’t been the case all. I was utterly devastated.

“I have been plagued by Endometriosis my whole life, and now it looks like it has possibly returned on my bowel.  It’s been a fight to this stage. It’s such a common condition but women are often made to feel like it’s psychological rather than physical. It took nearly eight years to get a diagnosis.”  

What advice do you have for women just starting their endo journey?

“I would urge other women to keep fighting and keep insisting that they are listened to. We know our bodies better than anyone else – keep banging down doors until someone takes you seriously. You can’t underestimate the impact of spending years looking for answers; it can feel so lonely trying to advocate for yourself. Something desperately needs to change!” 

Images: Getty