Can you describe what one of the worst days was like for you with period pain, and how it impacted your ability to get on with life and work?
I probably had it for as long as I've been having periods, since I was 12. I wasn't diagnosed with endometriosis until I was 36, which is an awfully long time to be living with the kind of crippling pain that comes with that. I had an away day with my team at work, we were having it in a room at a pub out of town, to get away from the office, and it just came on. It was absolutely unbearable. I just couldn't function at all. Rather embarrassingly, not only was I in so much pain, I could not stop crying. I'm a professional woman, I've got a great job, I work for a brilliant business, and there I was presenting when then this wave suddenly came over me. It was like everything just fell apart. I spoke to my boss and just said, "Listen, I just can't do it". He's brilliantly empathic and said, "I'm really sorry this has happened today". My colleague had to take me home, so we both had to miss the away day. I was literally lying on the back seat of her car in absolute agony.
At what point did you go to your GP thinking that maybe what you experienced each month was more severe than just regular period pain?
I first went when I was about 17 or 18. Don't get me wrong, a GP is ridiculously busy, they have five minute appointments, and I understand that, but every time I went, I was just offered the Pill, which obviously is a symptom control situation that doesn't help discover why the situation is as bad as it is. Once I was married, I was finding sex incredibly painful to the point of it being almost impossible, and smear tests were an absolute trauma every single time. I went for this one smear test and this nurse (I don't envy her job at all!) couldn't make the smear test happen. Nothing worked. And in the end she said to me, "Is sex painful for you?" And I said, "Well, yes. Is it?". She asked, "Do you have children?", and I wept. It was like nobody had ever even asked me before about any of this stuff and I just cried and cried. She said, "Right, this isn't okay, this is not a normal amount of pain for you to be experiencing, I'm going to ask your doctor to refer you to the gynaecologist". What I found fascinating about the situation was that it wasn't until it became a fertility issue that suddenly there was a lot of resource that could be put into it. I was misdiagnosed with Irritable Bowel Syndrome and eventually was then sent to a gynaecologist who said, 'Well, I think it's probably endometriosis'. I was so relieved, because you just feel like you're being a massive lightweight and think, 'Can I just not deal with the stuff that other women deal with all the time?'
Many of us have never heard anyone speak from the pulpit about dealing with these kinds of things, including the difficulty you were having with intimacy in your marriage, so do you think the church needs to?
On the one hand, I really, really do think they do, but it needs to be handled so delicately and sensitively. There are people like me who will be screaming out to be seen - I always love every time that the haemorrhaging woman comes around in scriptures - but then there will be the people for whom that would be mortifying because they are very private about it and desperately don't want to be seen. I think it's a really challenging place for churches and for communities to try and navigate, but I think, be led by the people. I'm from a tradition where having children is such a big thing, and I was just so aware that I was years into my marriage and wasn't having children yet. I might be wildly overestimating people's interest in my fertility levels, but I felt very much that people must have been thinking, "Surely they should have had children?", and "What's going on?". I was so conscious of that, rightly or wrongly. I wanted to be involved in church, I wanted to do things, but severe pain is exhausting - it's mentally exhausting. You feel physically wiped out for days and days - it's awful - so I was very conscious of appearing really flaky. I would sign up at church and say "I really want to do that" and felt like I was getting a reputation for being a bit a bit unreliable. Having an outlet to be able to say to people within a church context, "I'm really sorry, I'm just not always going to be able to do what I want to be able to do for you and for our community", some awareness will help enormously.
Would you say that the journey you've been on of having to endure physical pain, and the uncertainty of it all, has affected your relationship with God and your spiritual life?
There were times where I was in an awful lot of pain and I would think about haemorrhaging woman whilst praying, saying," You healed her Lord, you must be able to heal me, surely you can heal me". But then on the other side, I'm very aware of the value of pain, and the value of all experiences being part of God's plan. Sometimes it's about dying to your own expectations. I thought I'd be married at 25, that I'd have three children, and even when my now husband and I were dating we were talking about marriage and our [future] children were named - we knew the schools they were going to go to! We had it was all planned out, it was going to be amazing. Realising that in your walk with God the road isn't always clear and it isn't always the one that you've chosen, it's about just being able to kind of go, "Okay, plot change. We're going a different route". I'm not saying that was easy, I fought my corner and didn't always say "Thy will be done" in it. What I did realise is how incredibly powerful those words are, so every time I prayed the Lord's Prayer, I was so aware that when we say 'thy will be done', you've really got to mean that they are some very big words. In that sense, it's really brought me to a much closer understanding of what it means to walk with Christ in His things.