• Read more about Treatment and Management

• Read more about Diagnosis and treatment

• Read more about What is endometriosis?

• Read more about Living with Endometriosis

I started my period when I was 12. They were always painful and heavy. I have a distinct memory of putting a tampon in and going to a drama club and by the time I got there it was soaked through. My mum took me to the GP and I was given pain relief. Then when I was 14 I went on the pill which just ended up masking my problems.

I got on with my life but when I was older I started experiencing painful sex. I also started having issues with my bladder – I was regularly having infections and always needed the loo. I was always run down, tired or unwell with something. From the first moment I started my period to the point at which I was offered a scan was a period of 10 years. I was 23 when I had my first internal scan and I finally saw a doctor who took the initiative to think about my situation laterally.

The scan revealed that I had a huge cyst on my ovaries which was 8cm long and the doctor said I needed a laparoscopy. I had the surgery in June 2018 and it had to be extended by hours because, to quote my doctor: I was “a mess inside”. He had a daughter my age and told me that he felt compelled to do everything he could to help me. So put all my trust in him because he was the first person to listen and take me seriously. He said I had a severe case of Endometriosis and my fallopian tubes were crushed. He removed everything he could, I continued to use pain relief and sex stopped hurting for a while.

In 2019 I met my fiancée Tristan and the pain during sex returned. I stuck it out for a while then went to see a doctor who told me that that I was fine, but I was sure something was wrong, and later I discovered that I had ruptured a cyst. I had a second laparoscopy and that’s when a discussion about fertility came up. My egg reserves were extremely low and I found out my fallopian tubes were blocked. I got medically diagnosed as infertile and told IVF would be our only hope of having children.

We planned to start IVF at the beginning of 2020 but then Covid happened and it got cancelled. That was fortuitous because I got pregnant naturally which my consultant said was a miracle. We lost her at 18 weeks and that was awful. I started talking about the miscarriage on Instagram as a way to process the pain and because so many women go through it.

Then in March 2021 we had our first round of IVF and it worked. I feel so very lucky because a lot of women go through several rounds and it doesn’t happen. I’m still scared. When you go through a miscarriage at 18 weeks It’s always at the back of your mind. But I’m also trying to stay positive and hopeful.

That’s why I’m passionate about people being diagnosed sooner. Endometriosis has to be taken seriously because it’s a full body disease. It’s not just painful and heavy periods. I wish someone looked at everything going on in my medical history and pieced it together earlier. People weren’t looking at the bigger picture. There needs to be more research and education to help.
 

I was a young girl and I think that was part of the reason why I wasn’t taken seriously. I want people to feel they are heard because you’re told too often that there’s nothing wrong so you doubt yourself, and that’s the most isolating thing. I don’t want people to have to go through what I did.

“Endometriosis can be a very taboo topic. Not only do so many suffer silently due to what is seen as embarrassing from a social standpoint but I have also not come across many Asian women who talk about it. Asian families tend not to talk to their daughters about women's health and are usually raised not to talk about their monthly cycles to anyone, even in their own home. It is not considered an appropriate topic of conversation.

On my journey of trying to understand this affliction better, I have slowly begun to confide in those closest to me. If you are lucky, like I am, those closest to you will also shower you with unconditional love and support. In my attempt to reach out to others I have been blown away by the number of people so close to me who have silently been going through the same thing. 

My aim is to try and create enough awareness so that no-one dealing with Endometriosis will ever feel embarrassed to talk openly about what they are going through”.

Like many other women, when seeking help about my periods, I spent years having GPs tell me “You’re a woman, you will just have to learn to live with it” and suggesting ibuprofen, hot water bottles and putting me on the pill.

I was finally officially diagnosed with endometriosis via laparoscopy in August 2016. I was approaching my 31st birthday.

Five years and various surgical and hormonal treatments which have stopped my periods later (including two lots of chemical menopause), I had excision surgery with one of Wales’s NHS endometriosis specialists at the end of October 2021.

After being in theatre for just over six hours, all my visible endometriosis was excised…there was a LOT OF IT covering my pelvic wall, bowel, rectum, womb and ovaries! I was diagnosed with the added loveliness of suspected adenomyosis. (Just a reminder.... there is no cure for endometriosis, and I was told there is a 30-50% potential chance it will come back even after the 'gold standard' of treatment).

Following surgery, I was in hospital for two nights and signed off work for three weeks. I took my recovery day by day – it’s not a linear process and some days you can feel great and the next feel like death warmed up!

After the three weeks was up, I did debate about extending my time off, but by that point I had pretty much completed Netflix was bored out of my brain. My manager was really supportive and didn’t want me rushing back if I wasn’t ready, so I did a week of reduced hours to get me back into the swing of work and then was full-time again the following Monday. I work from home too so that was another factor in getting back into the swing of things as I could pick the comfiest chair to work from and take breaks whenever I needed.

Since surgery I have honestly felt like a new woman. I have had a few ‘off’ days and still get the bloating and occasional bleeding with bowel movements, but I have not had this many consecutive pain-free days since before I started my period back in 1999!

I’ve had regular catchups with my surgeon on the phone since my surgery and he is really happy with my progress…. turns out I’ve also lost 3kg sine my operation too!

This newfound zest for life inspired me to sign up to run the Cardiff half marathon on behalf of Endometriosis UK. I am no runner, but I fancied a challenge and figured if I didn’t do it this year, whilst I am pain free, I may not get another chance before the dreaded endo rears its head again or the adenomyosis potentially gets worse causing problems.

In January I started Couch to 5km, and I couldn’t jog for 30seconds without giving up! Fast forward to May and I ran the Cardiff Bay 10km in 1hr 15mins! I would have never thought that was possible for me before my surgery. Bring on Cardiff Half in October!

I was diagnosed with endometriosis in June 2019. This was after 14 years of at least 7 days a month of excruciating pain and debilitating periods. For many years I’d been trying to convince people that something wasn’t right with me and now finally there was evidence to prove it. For years I complained to doctors about period pain, but was constantly told that ‘some women suffer from more painful periods than others’ and that nothing could be done. I sadly started to believe this and thought I was supposed to live with this pain for the rest of my life. Not only that, I dreaded the “time of the month” due to crippling pelvic pain. It shouldn’t have taken this long to diagnose.

In 2021, I was told that I would likely need another surgery for my endometriosis and I was concerned about my fertility. A doctor recommended that I had an Ovarian Reserve Test to check the health of my ovaries. The results revealed I was producing less than the average number of eggs for my age. I decided to freeze my eggs, but that didn’t turn out as simple as I thought it would be. When I started taking hormonal medication for the egg freezing procedure, my body didn’t react to the hormones, which essentially meant I couldn’t freeze my eggs. I was devastated and scared – in all honest close to a breakdown.

At the second attempt, my body did react positively and I was able to freeze a few eggs. Too many people suffer in silence, especially when it comes to things like endometriosis and fertility, which is why I continue to raise awareness.

I am 35 years old and it took me 7 years to get diagnosed with thoracic endometriosis.

 The journey to diagnosis started with a right pneumothorax whilst having a period and despite being told I would be referred to a specialist respiratory department, this did not happen. Furthermore, a gynaecologist laughed at me when I suggested endometriosis had spread to my lungs. I was misdiagnosed and had many scans and hospital admissions before finally being taken seriously. 

I was diagnosed with thoracic endometriosis after being admitted for planned surgery i.e. right VATS for Pleurectomy, Bullectomy, and insertion of diaphragmatic mesh. My symptoms included shortness of breath, a heaviness in the chest and abdomen, a gurgling sensation around the diaphragm, and sharp pain in the shoulder and neck.

I have been under the care of the Department for Thoracic Surgery and had access to them as an outpatient after diagnosis. My endometriosis centre and GP are also aware of my condition, and I am currently on Zoladex injections to help manage the symptoms as well as inhalers. In my experience, the thoracic consultants have been very knowledgeable about my thoracic endometriosis and the treatment options available.

Due to my thoracic endometriosis, I am not as active as I would like to be. Every time that I have a period, my breathing gets worse, and it takes at least two weeks to build up my strength again. I am very breathless if I carry heavy items, try to run, walk fast, or climb stairs. I am prone to getting coughs and chest infections and I cannot travel without my inhalers. Often, I feel older than my years because of the impact thoracic endometriosis has and this has taken a toll on my mental health. But I am fortunate to have a supportive partner, family and friends as well as an online community of endometriosis sufferers.

It can be incredibly frustrating to wait for a diagnosis especially when the symptoms are having a big impact on your life. I would encourage you to try and get your GP to refer you to an endometriosis specialist with knowledge of thoracic endometriosis or ask your gynaecologist to refer you to a respiratory department. In the past, when I have been in so much pain that I am unable to move or breath properly, I call for an ambulance and the consultant at the hospital will ensure scans are done and try to refer me to the thoracic / respiratory team within that hospital or refer me to another NHS Trust. You might feel like you are battling an invisible illness, but your symptoms are real.

• Read more about Women's Health Strategy England: Much to be welcomed, but many questions