Looking back the clearest marker for the beginning of my battle with PMDD began following the birth of my second child (aged 30). At the time I believed I was suffering with straightforward Postnatal depression, but I now know that I am extremely sensitive to rapidly fluctuating hormones; so it follows that this was the likely trigger underlying my development of PND. It would also explain the terrible mood swings of the first 13 weeks of this pregnancy. I wondered what an earth was happening to me. I now know that all of this was likely caused by the fact that I am intolerant to the hormone progesterone ( as are a lot of women with PMDD).
Bouts of anxiety and depression were then constant features of my life from this time onwards. Unaware of PMDD, I put this down to the multiple stresses in my life at the time and for many years did not identify the pattern underlying my symptoms. I think the problem was muted in the early years after my sons birth, by the fact that I was on the combined contraceptive pill (so blocking ovulation), and I muddled along for a couple of years never feeling great, but able to manage.
I am a registered nurse and had been qualified for 4 years when my son was born. At the time of his birth I was working in the intensive care unit of the busy city hospital and for the most part loved my job. However following my return to work from maternity leave, I never settled back into it in the same way. I often felt out of place, overwhelmed and regularly felt unable to connect with my colleagues. I now know that these are symptoms of my PMDD, but at the time all I knew was that I was struggling both at home and at work.
I decided that the intense role of ICU nurse was not suiting me now I was a new mother, and decided to apply for a position on one of the surgical wards. When my son was 10 months old, and a couple of months after starting my new job; I nosedived headlong into PND and was off Work for two months. I was prescribed antidepressants and started feeling well enough to get back to work.
Although feeling so much better than I had been during my lowest phase, I don't feel I ever returned to the person I had been before my son was born. I plodded (no probably jogged and stumbled) along life's path juggling working full time with bringing up my young son and teenage daughter. I decided to take a change of direction and embarked on the challenge to try and fulfill my ambition to become a Health Visitor (I have had this ambition since the birth of my daughter when I was a young mum of 18, with a volatile, unsupportive partner and my Health Visitor was an inspiration to me).
So when my son was 2 years old, I took a change of direction and successfully obtained a position working as a trained nurse with the Health Visiting team. I did this for 2 years and then successfully applied for my Specialist Health Visiting degree. Midway through the year, I stopped my contraceptive pill because having completed our family, my husband underwent a vasectomy. On reflection, I can see that this is when my PMDD took on a life of its own, and my mental health went spiraling downwards.
At the time, I never made the link...I remember initially feeling better for ditching the pill, and enjoying an uplift in mood and libido. However, I can see now that this was probably prior to my first ovulation. Shortly after this, I remember a rapid increase in anxiety, and days where I just felt completely socially phobic, and unable to connect with anyone. At the time, I put these symptoms down to a stressful course and a bad practical placement. After an initially great start, my coping ability started spiraling downward, and I reached the point where I just felt like I could not go on anymore. I remember several occasions where I was driving home and just felt an overwhelming urge to drive the car into a tree. Despite this I kept the mask in place as much as possible, and limped on scared to ask for any help for fear of the impact any support for mental health problems would have on my chances of securing a post at the end of the course. I started taking St Johns wort for mood, and stumbled on through the fog.
Against all odds I qualified, and secured a full time post. Three months later, I broke down at work and had to take two weeks off. Thus began my relationship with antidepressants. I started on medication which did help lift my mood, and keep me from falling into the black pit of despair totally. Still not realizing the link with my hormones, I seemed to spend most of my time in a state of high anxiety. I had days where my self esteem was at an all time low and I struggled to meet the requirements of my role. I managed another 6 mths before once again I could keep going no more, and ended up totally falling apart at work having to have 3 mths off sick with my mood at an all time low. Looking back, I can see that this day where I fell apart was probably either post ovulation, or pre menstrual but the fall out from this experience was huge in that, I felt a complete failure, and it took me a long time to pick myself up.
On my return to work, still none the wiser about the link with my hormones...I spent another year just coping as best as I could with high levels of anxiety and low self esteem. My colleagues got used to me dissolving into tears at times, and behind the scenes, I would go home and once again...pull myself up by my boot straps and go in the following day and cope the best I could. The most serious consequence of this time was almost certainly the fact that all my energies went into getting through my work day, and then I would get home and almost shut down with exhaustion. This was hard on the whole family. Looking back, and knowing what I know now; I really don't know how I kept going for so long.
I ended up having to take another extended period of sick leave when I broke down at work and disclosed to my manager that I had considered taking an overdose the night before. At this time I regularly fantasized about death, and when thought it was quite normal to think..." Oh well if things get too bad, I can always end it all". It is frightening reflecting back now how easily that state of mind became my normal, and I could dee now way out. Not long after this, I finally noticed the link with my menstrual cycle. It became apparent that my worst times were the last two weeks of my month. So here started a new battle...the one with the health professionals.
When I mentioned it too my GP, she took it on board initially and asked me if I had tried any natural remedies. I replied that I had, and that was the extent of the support I received. She agreed to put me back on Yasmin (the combined pill) which I had read was rated as being a good choice for women suffering with PMS. This did improve things for a while, but completely killed my any libido, and left me feeling pretty flat most of the time. However, it kept me functioning and that was the important thing.
After a while, I noticed symptoms returning with more force, and worst of all...I was experiencing regular bouts of extremely low mood. These episodes would often take me by surprise and happen out of the blue. It meant that my work and general confidence and mood began to suffer as a result. The worst thing was that I had just started in a new NHS trust to try and leave my memories and undermined reputation behind. I really thought that if I stayed on the Yasmin until menopause, I would be sorted.
It was not to be however, and once again my ability to function both at home and at work took a nose dive. I regularly was to be found locked in the toilet trying to stop crying and pull myself together. I struggled terribly with the social aspect of the workplace terribly, with social and agoraphobic type symptoms, anxiety and paranoia. My sleep was awful and this just added to the struggle. I thought my colleagues must see me as jekyll and hyde, as my persona's varied so much from day to day, hour to hour.
On asking the GP if I could be referred to a gynecologist for my PMDD, she just replied "they won't do anything" and that was it...end of the road as far as she was concerned.
I was so desperate by this point after once again breaking down, unable to continue at work; that I went online and found a private menopause and PMS specialist in London... Professor Studd.
I took the bull by the horns and rang and booked a consultation with him. In the end, I decided that it may be expensive, but without a job I wouldn't be able to afford anything so it was worth it.
The following month saw me heading up to London. I have to say it was the best decision I have ever made. For the first time I felt acknowledged and "normal."
He took a history and promised me that I would soon be feeling a lot better. I was prescribed oestrogen to boost my dwindling levels and suppress my cycle. I noticed the difference by the following morning...my mood felt boyant for the first time in ages. This incredible turnaround lasted a month or so, but then unfortunately my cycle kept breaking through leading to all the old unpleasant symptoms breaking through.
I went back up to see the Professor, and he clarified that my oestrogen levels were not high enough to suppress my cycle, so suggested an implant. I agreed to this and requested a mirena coil to provide the necessary opposing progesterone due to my intolerance issues. Unfortunately, I never benefitted from the increased oestrogen and gradually realized that this must be due to the mirena coil. Despite the progesterone level from the mirena being very small, it was having a very detrimental effect on me. I felt anxious all the time, slept poorly, felt flat in mood and had absolutely no libido whatsoever. I also bled continuously from the time it was put in.
During this time I was still off on long term sick from work, and the side effects from the mirena meant that I was not stable enough to build up the confidence necessary to get back. Consequently I ended up needing 5months off before I once again returned to my role. I decided to have the mirena removed and again almost overnight noticed the improvement in my mood and overall well being. However I was still suffering PMDD symptoms for all but about 5 days off the month. The most frustrating aspect of my PMDD is that I get two peaks of symptoms each month...once just after ovulation for about 24 hrs, then symptoms recede for up to a week and come on with avengance in the build up to my period. This just created havoc with my work life, and meant that I just used to pray that my days of worst symptoms would fall on my days off.
By now I realized that it was unrealistic for me to keep returning to London having to pay accommodation and transport, as well as the consultation fees. Again with no support from anyone except the fantastic forums I found on face book, I decided to ring the local private city hospital and ask them if they had a gynecologist or endocrinologist that specialized in PMS or menopause. Luckily they were able to suggest a female gynae that I could contact who had a clinic based in Truro Cornwall. So once again I was forced to go private to get the support I needed. I couldn't recommend Dr Gray highly enough though...she is so thorough and knowledgeable and took the time to explain everything to us clearly too.
So due to my progesterone intolerance and extreme sensitivity to fluctuations in oestrogen level, it became apparent that ovarian suppression with a GnRh analogue.
I therefore started ovarian suppression treatment with Zoladex which with add back oestrogen gel, finally effectively stabilized my PMDD symptoms. The plan was that if this worked then a referral for a full hysterectomy be made. The next challenge was to try and convince a surgeon on the NHS to take me on. This was the most stressful of times. It was so hard knowing what needed to happen for me to be able to carry on with my life successfully, but equally knowing that that it may not be possible to convince an NHS surgeon that My uterus would need to be removed Too due to the fact I am unable to tolerate progesterone. Thankfully Dr Gray was able to recommend a surgeon that she had known operate on a similar case previously. She sent a referral letter which my GP then forwarded on, and my anxious wait began.
Thankfully the referral was accepted, and I am due to have a full hysterectomy on April 19th. Unfortunately the future of my career is hanging in the balance somewhat, as Despite hoping to carry on in post until my surgery; this was not possible. The Zoladex lost its effectiveness at suppressing my cycle after a couple of months, so PMDD was once again back in my life. A month before writing this, I had to give up my battle to keep going at work and once again had to go off sick. My sickness record is critical, my reputation tarnished and my professional confidence at an all time low. My work future following my hysterectomy is very uncertain, but at least bit by bit, without the presence of PMDD... I can start piecing my life back together.