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.

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“My first surgery taught me that I had to be very patient with my recovery and very patient with myself in general.”

My experience

I’d been experiencing endometriosis pains for three years, but was not officially diagnosed with endometriosis. One day during my period I woke up in excruciating pain and ended up undergoing emergency surgery. The surgeons discovered that an endometrioma had ruptured in my left ovary and caused an infection. This was when I was given my official diagnosis of endometriosis.

My recovery was very slow following the surgery due to damaged caused by the ruptured endometrioma and the infection. After my emergency surgery I was so worried about having a recurring cyst that would rupture again. It was a scary time because I didn’t feel I was getting much support or answers from the medical community.

Having surgery again

About 6 months later, I had an appointment at a specialist endometriosis centre and it was suggested that I have further surgery as soon as possible to reduce my chances of the endometriosis recurring. After the trauma of the first surgery I really wasn’t looking forward to having a second surgery so soon. However, it was completely different not going into surgery in an emergency situation.

The second surgery was more aggressive – endometriosis wasn’t just present on my left ovary, but also around my colon and vagina – with more tissue and endometriosis being removed than during my first operation. Despite this, I healed much quicker because I wasn’t fighting the infection caused by the fluid of an erupted cyst.

Since having my second surgery, it is estimated that the chance of my endometriosis recurring has been reduced quite considerably.

How I have managed my recovery after surgery

My first surgery taught me that I had to be very patient with my recovery and very patient with myself in general.

I’ve found the endometriosis diet has helped my body heal well. It never prevented my endometriosis pain, but it made me bounce back from surgery and infection much faster than I think I would have done otherwise. So I made sure I have lots of vegetable and legumes while cutting back on sugar, dairy, wheat and red meat.

This journey has been a long and hard one, but I can tell I’m meant to learn how not to be so angry at my body. I used to feel incredibly betrayed by my body and the endometriosis – “How could my own body cause me so much pain and fear?” Now I try not to think about it that way. It’s very much a learning process and much of that is patience: giving my body time to heal physically and emotionally.

- Lauren

Read Lauren's story about how she was diagnosed with endometriosis

“Every step of this painful journey I’ve had to convince everyone how much pain I was in.”

My experience

I’d been experiencing endometriosis pains for three years, but was not officially diagnosed with endometriosis. About 3 years ago I noticed my periods, which had also been painful, were getting increasingly more painful. I started becoming aware of a sharp jabbing pain right by my colon and feeling tender and bloated around my tailbone and lower pelvis area. My periods had become so painful that I was missing 1-2 days of work a month. Painkillers sometimes dulled the pain, but usually they didn’t do much.

I had been in to see my GP about possibly having a cyst because I had felt a lump in my pelvis below my hip bone. My GP wasn’t convinced and said she said she couldn’t feel anything on a pelvic exam. I finally convinced her to let me get an ultrasound just to make sure. The ultrasound showed a 4x5 cm cyst by my left ovary. My GP scheduled me for a scan in four weeks’ time.

However, before I had my scan, I awoke one morning in severe pain. My husband called 999, but despite the obvious pain I was in, the medics still seemed unconvinced. I was eventually taken to hospital where I developed a very high fever and a very bloated stomach. However, I still waited for three days before eventually being given a scan, which showed an alarming amount of fluid in my abdomen. I was quickly rushed into surgery.

Post-surgery I was told I did have endometriosis and that an endometrioma had ruptured in my left ovary and had attracted a fluid to it. This fluid had become infected and was causing my high fever and pain.

How I felt finally getting officially diagnosed with endometriosis

I was a bit relieved to finally be diagnosed, but it was a scary time because I didn’t feel I was getting much support or answers from the medical community. I also felt frustrated that I wasn’t officially diagnosed sooner. I felt like I was ahead of the doctors by two or three years.

My recovery was very slow following the surgery due to damaged caused by the ruptured endometrioma and the infection. I could have been spared much pain and fear, and could have saved the NHS a lot of money, if I had been diagnosed much quicker.

Every step of this painful journey I’ve had to convince everyone how much pain I was in.

It’s really important to not be put off by doctors who don’t think your endometriosis is something to be aggressive about. You need to be aggressive about taking care of yourself by demanding ultrasounds and appointments with a gynecologist.

- Lauren

Read Lauren's story about how she managed her recovery from her second endometriosis surgery

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