Lynsey’s endometriosis story

Endometriosis affects 1 in 10 women and those assigned female at birth in the UK. That means one of your family, one of your friends, someone you work with or even you may suffer from this difficult to diagnose condition. Despite being medically recognised for more than 100 years, women still face significant hurdles in the diagnosis and treatment of the condition. This is our own colleague, Lynsey’s, story.

When did you first realise there was a problem?

I didn’t really know what endometriosis was at the time my symptoms started, though I had heard of it. I just didn’t know anything about it beyond that it was a gynaecological condition. So, I suppose I never realised there was a problem.

I had always suffered from painful periods but thought they were ‘just one of those things’ that women had to put up with. The symptoms I experienced were mainly pain related; pain during my period that made me want to crawl up into the foetal position and lie in bed; pain during intercourse; and pain that at times was so severe, I took it upon myself to increase the dosage of the painkillers I was taking each month during my period so I could soften the blow.

I also experienced fatigue during my periods. Though, admittedly, I didn’t have an opportunity to discuss my symptoms and experience with a healthcare professional, so I assumed the fatigue (the aching, the tiredness, and the overall exhaustion) was a side effect of the pain and other inconveniences associated with endometriosis.

Can you describe your experience of getting an endometriosis diagnosis?

I was diagnosed with endometriosis by chance. I had two miscarriages. At the scan during the second miscarriage, I was told I had a fibroid. The consultant suggested I have a laparoscopy to see if the fibroid was on the outside of my uterus. He suggested removing the fibroid if he could in case this was contributing to the miscarriages.

It was only after this surgical procedure that I was formally told I had endometriosis. However, because I was seeing the consultant about the fibroid and fertility problems, he didn’t give me much information about the endometriosis. Instead, he just told me if I was able to conceive again and carry to full term that it would cure my endometriosis.

I wasn’t provided any further information.

I wasn’t referred to a specialist.

And ultimately, I was left in the dark about the condition, with the only available advice being “get pregnant again; it might cure this incurable disease”.

I had, and still have, a lot of unanswered questions.

How has endometriosis affected your life?

Shortly after being diagnosed with endometriosis, I became pregnant with my daughter. But we tried again for another baby a few years later, without any luck in conceiving. My partner and I both had fertility tests; both of which came back normal. In hindsight, nothing was ever investigated about the endometriosis, despite me mentioning it to my doctor at the time; leaving the possibility of it being a contributing factor to my inability to conceive as a lingering thought in the back of my mind. To this day, I will never know if my having endometriosis was the reason why I was unable to have a second child.

What are your worries about dealing with this condition in the future? 

I’m now in my mid-forties. Unfortunately, I think this is something I’m going to have to put up with until I go through the menopause. I had an implant fitted after giving birth to my daughter, which stopped my periods altogether and really helped, but I haven’t been given anything else to manage symptoms should they come back.

What do you wish others understood about endometriosis?

That it isn’t normal to suffer from severe pain during your period. If you are suffering from painful periods, please go and get it checked out. I would like more people to know what endometriosis is and not just put it down as one of ’the things that women have to put up with‘, which is what I did for many years.

I would hope that anyone suspected to have endometriosis is given far more information and advice than I ever received. I would advise them to go and see a GP and keep being persistent if they feel they aren’t being heard.

What does working for an endometriosis-friendly employer mean to you?

It’s great that Onyx Health are taking endometriosis seriously and are raising awareness of the condition. It’s nice to know that your employer would be considerate if you needed time off to help with pain, as I would never have dreamed of telling any of my previous employers that I needed a bit time off because of endometriosis pain; I don’t think they would have been understanding at all.

Do you have any advice for anyone who thinks they might have endometriosis? 

Endometriosis is a condition I’ve known I have, but I’ve always felt in the dark about it as I’ve never discussed it with a specialist, and this has left me with many unanswered questions. My advice to anyone feeling that they’re in the dark about endometriosis would be to be specific. Describe the pain you’re feeling in detail. Push back when ignored. And, most importantly, don’t be afraid to discuss your symptoms with your employer. They should understand and give you the time you need to recover.  

If you think you may be suffering from endometriosis, check out our STRONG tips and endometriosis tracker to help you to secure a diagnosis.