Desperate for a diagnosis

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Desperate, that describes how I have felt over the years. Desperate for this to stop happening, dying for the ‘Dark Zone’ to leave me alone.  Desperate for the right help.

In my previous blog posts I touch on how I was wrongly diagnosed with delayed PTSD, at some points so medicated that I couldn’t go to the toilet or even speak properly, slurring my words to the point of no recognition.  In my muddled, confused state I just kept thinking how strange it was that I didn’t feel bad all the time, I couldn’t understand how I could go from feeling happy one moment to completely desolate the next.  It made no sense.

Tracking my symptoms helped me to recognise a pattern, keeping a diary not only provided an outlet for me to release my thoughts, frustrations and feelings, it became a crucial part of receiving the right treatment.

As I mentioned in my post ‘No matter how strong we are, everyone has a breaking point’ I was referred to a gynaecologist. My Consultant initially thought that the low episodes were due to my Mirena coil nearing its expiry, having been in situ for 5 years.   Due to a history of endometriosis I was booked in for a laparoscopy to change the coil as it was thought to be imbedded in my womb.   Post operatively I spoke to him about my symptoms and he asked to see me in clinic in 6 weeks’ time and hinted that he really thought that a new coil would made me feel better.

The appointment came through and it was in fact 10 weeks after the laparoscopy. During this period I entered the ‘dark zone’ twice, on one occasion, going missing and putting myself at risk.  It was petrifying.

On the day of the appointment I felt sick with anxiety but I went well prepared. I sat with my consultant whilst he read through my condensed diary, I showed him information that I collated, namely from Professor Studd’s page.   He looked at me and said that he was sorry I was going through such a difficult time and that he was going to help me.  He explained I had Severe premenstrual syndrome (PMDD) and that as the primary cause of my symptoms was ovulation he wanted to give me GnRH monthly injections to suppress it, putting me on a medical menopause.  We discussed HRT to help with the side effects and he prescribed Evorel 100 patches.   As I had researched treatment options I understood that this was in line with Studd’s treatment guidelines.  My consultant gave me my first injection there and then and said he would write to my GP and see me again 4 weeks’ time.  I walked outside and just cried with relief.  I felt listened to, I felt understood and felt so thankful that somebody was giving me the help I so desperately needed.

Below is a list of what I took to the appointment:

A condensed version of my diary which listed the following:

  • My symptoms
  • Date I entered and left the ‘dark zone’
  • Date my period began.
  • Impact on my work, family and friends.

Work correspondence:

  • Attendance logs
  • A letter from the company doctor and occupation health team.

Letter from the mental health team.

Print outs from Studd’s page, along with a copy of found on NAPMDD.

I will be writing soon about how I’m getting on with the treatment, I’m currently in month three…. Please read on to hear about PMDD from my husband’s perspective.

As always I’m sending hugs, stay strong x

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