After many years of going to many doctors, struggling with depression, and trying lots of different treatments including various antidepressants, the pill, CBT, doing exercise, my depression wasn’t getting any better and in fact it was getting worse to the point where I didn’t want to be here any more. I’d told my GP this for several years and she had tried her best to help me.
I did mention on many occasions that my mood seemed to be related to my monthly cycle, but because my periods were regular, I was told it couldn’t be to do with my hormones. Having been diagnosed with M.E./Chronic Fatigue Syndrome I was seeing a specialist nurse regularly and she picked up on my mood and its correlation to my monthly cycle and discussed the possibility of something called Premenstrual Dysphoric Disorder (PMDD). She gave me some information to read and told me to speak to my GP about it. I was shocked by what I read because it described me perfectly.
At the time I was also seeing a councillor through a charity called Reuben’s Retreat after my son Jack was born asleep, this counsellor also picked up on my mood linking with my monthly cycle. By the time I finally got referred to a Gynaecologist in October 2019 I was feeling suicidal for 3 weeks of the month which continued as a vicious cycle getting worse the longer it went on and I got to the point of realising it had robbed my children of their mum, my parents of their daughter, my husband of his wife, and me of my life.
Between October 2019 and August 2020, I had several appointments with my Gynaecologist, an Ultrasound Scan, and a trial of Prostap injections (chemical menopause) which I had to stop due to them affecting my blood pressure, and then I was placed on the waiting list for a Hysterectomy. During the short time I was in chemical menopause I had some relief of my PMDD symptoms and noticed a big improvement in my mental health which showed the Hysterectomy would be the most drastic treatment but best solution for me.
During this time, I was also diagnosed with Binge Eating Disorder, another symptom of PMDD, and I feel because my PMDD was left untreated for so long, this then turned into another illness to battle. Even the gynaecologists couldn’t help me with this and pressured me to lose weight for surgery which made my eating disorder worse. I feel there needs to be a wider knowledge about this and the effect of treating a patient for one condition impacting other conditions. This illustrates the importance of taking a full medical history and listening to the patient. I had explained my eating disorder to two consultants but wasn’t listened to or understood, which in turn made me more poorly when I was already at rock bottom. Two years passed whilst being on the waiting list for the eating disorder therapy and I was told I had been taken off the waiting list for my surgery because of my high BMI. The Gynaecologist dealing with my PMDD stated that as gynaecologist they are not trained in mental health especially regarding the thoughts of suicide. Whilst I understand this to a point, this gynaecologist diagnosed PMDD so I would expect them to know about the low mood and suicidal thoughts with this condition. After reaching an all-time low I sought another opinion albeit paying privately to see another consultant. All I can say is I finally felt I was being listened to and being spoken to in an honest and open way. I believe he has saved my life!
He suggested trying Zoladex injections to again put me into chemical menopause. After I told him about my experience with Prostap he said I could have been treated for the blood pressure problems, as the side effect could have settled in time. I was happy with the suggestion to try Zoladex, and mentally it changed my life. It also provided this consultant with a fuller understanding of the effects of PMDD and how life changing it can be, to the extent that at my next appointment he apologised for not understanding fully at my previous appointment. Him being caring, empathetic and professional was all that was needed to get me on the right road again, but it also highlighted that even trained medical professionals are not aware of the full effects of this condition and this is what got me thinking about using my story to raise awareness for PMDD.
The way I had been treated over the past 4/5 years could’ve been avoided. The trauma caused to me mentally and physically every day during this time is unforgiveable and I’m hoping by raising some awareness for PMDD I can help other women avoid being treated the way I have been, which might hopefully save lives. It isn’t just the effect it’s had on myself, but my children are now experiencing anxiety themselves. I do have quite a complex medical history so there are many factors that have contributed to this, but this condition and the way I have been treated have played a massive part. I also have a condition called Mast Cell Activation Disorder and hormones can also affect this causing flare ups and even anaphylaxis, so getting control of my PMDD will hopefully have a positive effect and help this condition as well, but I also think this shows what a dramatic impact hormones can have on our bodies, both mentally and physically.
Knowing how much the Zoladex injections helped my PMDD the next course of action was to once again be listed for a Hysterectomy. The consultant referred me back to the NHS as he knew I was struggling financially to pay for my injections. He did try to get my GP to prescribe but they refused because I was seeing him privately which added to the burden of my situation through no fault of my own, and he was very understanding about this and couldn’t have referred me to a more perfect, understanding, and caring consultant at Manchester Foundation Trust. Between both of these consultants I started to gain a little trust and hope within the medical setting again. He agreed to do my Hysterectomy and oversee my Zoladex injections whilst on his waiting list. I had two pre-ops, one with a nurse and one with an Anaesthetist, and they were also very understanding and supportive with my journey and medical history up to this point.
October 2023 came and the day of my surgery. As you can imagine I was very anxious and scared, as I imagine most people would be, but after my journey I think my anxiety was amplified. I am happy to say the day of my surgery couldn’t have gone any better and this is all down to the caring consultant and his team that looked after me and thought about every possibility due to my complex health issues, which was just what I needed. I really felt cared for with lots of trust. I woke up from surgery feeling so happy, which was a relief after all the years of trauma. I couldn’t believe it was finally all over! For about 6 weeks I felt amazing both mentally and physically. I couldn’t believe how well I was, and it wasn’t just me that noticed. My family couldn’t believe the difference, as they expected me to feel worse after my surgery whilst I was in recovery. I don’t know if this was from the surgery itself or just the pure relief that it was all over with! I was so grateful to be feeling the way I was and so positive about the future!
Around 6/7 weeks after my Hysterectomy I started to feel like my PMDD symptoms were coming back, so for the next few weeks I tried to be patient with myself and thought it was just part of my recovery, but it was causing me distress at the thought my PMDD had returned, so I had an appointment with my GP who then realised I hadn’t been put on any HRT due to a letter sent by my consultant being missed. I should’ve been put on HRT 6 weeks after my surgery and we were about 16 weeks after my Hysterectomy at this point. My GP put me on patches straight away but after a few months they didn’t seem to be helping so I was moved on to a gel which did help a little. If only I could feel how I did during the 6 weeks after my surgery, it was so refreshing and nice! It’s now January 2025 and I am still struggling with what feels like PMDD but not on the same scale as before my surgery which is still a positive. I feel my HRT just isn’t right or isn’t working. I have been to my GP several times asking for blood tests to check my hormone levels but this isn’t something they would do. I was discharged from the hospital in May 2024 with the surgery going well and my wounds healing nicely and was told to be patient with the HRT and get my GP to help me with this. So again, I find myself lost and having to try to figure this out on my own!
I feel getting the HRT right is such an important and very complicated part of the patient’s recovery and treatment following surgery. More support is needed for patients at this point in their journey and it requires care and compassion to get the patient on the right track, maybe with a menopause nurse/clinic to help consultants. Through my PMDD awareness with the hospital, this is something we have discussed, and from this I have spoken to a menopause nurse, had blood tests and have a follow up appointment next month. Within in couple of weeks I got the results of my blood tests and found out that my oestrogen levels were very low so seemingly not absorbing my HRT gel which explains why I am still struggling. If the blood test had been carried out earlier, it would’ve highlighted this sooner and again caused me less trauma.
Whilst dealing with this I am also waiting for trauma therapy for what I have been told is likely to be PTSD which has been caused by many traumatic events in my life including having PMDD and I feel the battle I have had to get treated will have played a massive part of this.
I am hoping now we are getting on the right track with my HRT and hopefully, starting my Trauma Therapy soon, I can start feeling better, living my life again and start looking forward to the next happy chapter of my life.
IDEAS to help raise awareness…
- Learning to spot the signs symptoms earlier to help with treatment and this might also help to look at a wider range off treatments
- Spotting people at high risk….. past trauma/stress both physically and mentally including abuse and other traumatic events, family history, mental health conditions, post-natal depression,
- Sanitary Package/Period medications/products – Awareness and how to spot the symptoms on them for how hormones can affect our mental health.
- Part of education in high schools, colleges, year 6 (primary), university etc
- More training for – GP’S, Nurses, Midwifes, Gynaecologist, teachers, mental health practitioners, pharmacists, Health visitors, Social Services, Police
- Social media, chat shows, story line on TV, women’s magazines posters in GP surgeries, chemists, clinical settings, on toilet doors, changing room mirrors/doors, family planning clinics
- Part of mental health screening
- Eating disorder clinics – the link between hormones and eating disorders
- Hormone screening like having a smear test/mammogram – Hormone health
- ‘Hormone wellbeing champions’ in hospitals, GP’S, Clinics to help and concentrate on the wellbeing side off women’s health.
- ‘My hormones made me suicidal’ ‘Are your hormones affecting your mental health’ campaigns.
- Postcards with simple to the point information and maybe using images like the one in this post, or given out and maybe posted automatically when we receive screening information
- Ante-natal care, pregnancy care, mum and baby groups
- More awareness in the work place.