1. When did you first get symptoms?
I first started having symptoms quite late into my pregnancy. I had earlier been told I was suffering from symphysis pubis dysfunction (SPD). I then noticed a rash on my abdomen, a bruise type rash about the size of a fingernail or smaller all over my bump but particularly to my lower abdomen. It looked very strange and I knew something wasn’t right. ‘When you know, you know’!
2. How did your symptoms change over time?
From the mid July 2019 I noticed a pain in the top of my left foot as if it was heavily bruised but there was nothing to see. Over the next couple of days/weeks everything went down hill quite catastrophically, to the point where I needed crutches to get around and a wheelchair out of the house and even eventually needing a commode in my room as I couldn’t physically get to the toilet. I ended up being in the most horrific pain imaginable. I needed so much help to do anything. Every thing I did was a huge effort and I ended up dreading every movement I had to make. I was in absolute agony. I can’t describe the pain and torment I was facing. I didn’t just have myself to worry about but my unborn child too. Was my baby ok? Was what I was going through affecting the baby? No one knew!
3. How did the medics respond to your symptoms?
After many ‘cries for help’ to sonographers at my scheduled extra scans due to concerns about the growth of my baby, numerous trips to the Pregnancy Assessment Unit (PAU) and being told everything was related to my SPD - oh and being told by a registrar that a rash doctor would know what my bruises/rash were - a Dr that I was never referred to. I KNEW SOMETHING WAS NOT RIGHT…..PLEASE ALWAYS TRUST YOUR GUT!!! I have an extremely high pain threshold and I’m very tolerant of pain. I went to see my midwife at my local GP surgery on 14th August. It was at this point where my family were doing everything for me. I could barely face walking with crutches, needing to be in a wheelchair to move around outside of the house and was bedridden with a commode in my room due to not being able to face the small trip to the bathroom. I was in excruciating pain and suffering with my joints significantly, particularly my ankles, knees, wrists and elbows.
My midwife was horrified when she saw the state of me (she later said she needed counselling due to her experience with me and not challenging other professionals over the dismissive care I received). It was, eventually, decided that my health and the effects on my unborn child was a real concern and I needed to attend the local hospital to see my obstetrician. I am still waiting to see said consultant obstetrician but the following day, 15th August (my poor mam’s birthday - she, along with the rest of my family, like Tilly’s team, has been with me every step of the way! They are an all saints and I can't thank them enough), I saw the obstetrician’s junior, a newly qualified Dr on his first shift in the PAU. He was well out of his depth! After a lot of ‘ummming’ and ‘arrrring’ the only thing he could suggest was to admit me, despite not having the foggiest what was going on. Being admitted was such a relief….someone may finally help 🙏🏽🙏🏽🙏🏽
4. Have you ever been admitted to the hospital for your condition/symptoms?
Finally, admitted to the maternity ward on 15th August. I was admitted due to nobody having a clue what was going on. The following night in hospital I needed to be transferred from the bed to the commode by two midwives using a slide board. The pain was unimaginable. I could barely bare it any longer. I couldn’t bare to touch my legs or anyone else to touch them. I couldn’t move them on my own - they had to be so carefully cupped under my ankles and lifted from the bed one by one. The two midwives on shift that night could visibly see I was not just suffering from SPD - this was not ok! They were amazing! They arranged for the Dr to come and see me first thing the next day. They told me to contact my mam to come in at 7am so she could be present when he came to support me. He was lovely and so understanding. He talked through what I had been experiencing and said he would contact the anaesthetist team to manage my pain. WHAT A RELIEF!!!
5. What was the test that finally diagnosed you?
After what felt like a million blood tests, urine samples, a lumber puncture etc. It was a biopsy that confirmed my diagnosis.
My diagnosis: Polyarteritis Nodosa (cutaneous PAN - diagnosed in late pregnancy)
Part 2 of Camilla's story coming soon!
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