Meet Maggie

I used to curl up and crawl on the floor in pain. I was put on a pill to help with this. The first period of being on the pill was the worst. I booked an emergency appointment with the GP the following morning. The GP tried to examine my stomach, but I couldn’t lie down because I was in agony. They concluded I was having a miscarriage, but that was wrong as I was on my period. I was given an urgent note to show at A&E.

My Story

Having painful periods has always been an accepted norm, and you just have to find ways to cope. Then one day you’re told your lung has collapsed.

I was examined and admitted for being tachycardiac. There was a lot of confusion at the ward as the nurses wanted me to confirm a miscarriage. I had a chest Xray and there it was — pneumothorax. We went through all the usual causes i.e. smoking, genetics, lung disease etc but none fit. In passing catamenial pneumothorax (a condition of air leaking into the pleural space (pneumothorax) occurring in conjunction with menstrual periods) was mentioned. Air was removed from around my lungs, and we moved on to stomach pains.

All focus back to the stomach pains. I was discharged and referred to an imaging department for a trans vaginal ultrasound. I was told it was likely PCOS causing the agonising pains.

In 2013, 5 years from the first signs of thoracic endometriosis; at a regular GP check-up the nurse noticed my shortness of breath and prescribed an asthma pump. For obvious reasons this didn’t relieve my symptoms. I continued to suffer from shortness of breath, ribs and right shoulder pain, and carried an enormous, bloated belly. I could hear water sloshing around in my belly at times.

Remembering the mention of PCOS I visited the GP to get a follow up ultrasound of the abdomen. During imaging, I noted a concerned look on the sonographer’s face. She had moved the ultrasound probe (transducer) more to my chest and asked lots of questions. After the scan she asked me to see my GP immediately.

The next day the GP referred me for a chest X ray. After the scan the radiographer asked me to wait around. Anxiety anyone!!! The radiographer returned and asked me to follow her to A&E. The X rays showed fluid in the chest and a collapsed right lung. I was admitted and more than 2 litres of fluid was drained from the chest.

Unfortunately, the lung didn’t re expand after draining the fluid. I spent 5 days in hospital carrying out tests and waiting for the lung to re-expand. On a morning ward walk a consultant mentioned endometriosis.

I was sent for a chest, pelvis and abdomen MRI scan; it concluded the appearance are suggestive of endometriosis. Later that evening, I was transferred to a different specialist hospital. The plan was to have a video-assisted thoracoscopic surgery (VATS) to clean the diaphragm and allow my lung to expand. As planned, I went to theatre; to wake up from a 4 hour long open thoracotomy surgery. The consultant explained that there was a lot of damage and decortication was also performed.

The thoracic surgeon had done his bit and was brilliant at checking in. In the background there was a bit of a fuss regarding my case. It seems the gynaecology department didn’t want to take my case on. Personal opinion; they didn’t believe the cause of my symptoms to be endometriosis. The thoracic department insisted I get seen by the gynaecology department to prevent the issues with the lung to rear its ugly head again. For this reason, I was prescribed a Zoladex injection to stop my period and to allow the gynaecology department to come on board.

Thanks to the thoracic department efforts I was discharged after 2 weeks with a referral to a gynaecologist. I was again lucky to end up with an appointment with a consultant gynaecologist with an interest in endometriosis. In 2014 she performed a laparoscopic surgery.

Following on from both surgeries my stomach pains are bearable but the dull ache in the right shoulder rears its ugly head now and them at the onset of the period. I will get this checked when hospitals are under less strain. I note since I’ve taken to jogging the right shoulder ache is very minimal.