HRT update – Week 10

Hello and apologies. Once again I’m a little late with the update. The truth is, the last four weeks have been all over the place, and at times not at all kind to me physically, hormonally, emotionally or professionally.

If I had to describe this most recent cycle of HRT in three words it would be: Exhausting, variable, and unstable.

Exhausting because despite being in the third month of this trial, my sleep is not really anymore settled and fatigue has been really crippling me. I’m so tired during the day and we’re not talking just a few yawns here or there, it’s a real physical inability to keep my eyes open. I’m still struggling to remember what I walked into a room for and small things that may have seemed insignificant in isolation are problematic with reoccurrence: things like sending Ciara to school in her PE kit on the wrong day and similar. Combining this with parenting a one year old stunt man and six year old diva, is not cool. It’s also quite dangerous. Unsurprisingly of course there are sans day time naps, thus perpetuating the cycle of exhaustion.

Variable is the big one. I’ve felt physically unwell for weeks but have managed to keep a level of emotional equilibrium. I’ve lost my hair, I’ve lost hope and I’ve felt really unsettled. I’ve also had days where I’ve felt extremely hopeful, excited, energetic and healthy. So far there’s really no real tell to suggest HRT is working miracles or not, because the symptoms are still so variable and as mentioned I’ve actually felt quite a lot worse physically for the last few weeks. What’s unclear though, is whether this is related to the HRT at all, is it Fibro, is it from starting new statin medication? Or is it indeed the usual hormonal hell experienced during a cycle in which I am still ovulating?

Unstable. I mention this because the simple fact that this process is soooooo variable makes me feel a little unstable. I have hope, I really do, that this will improve.

The thing about hope is though, you always have to be holding onto it. If you drop it, it’s gone, ‘poof’ and all of the trial and error of the last three months is worthless.

divamum

Upsides:

I don’t want to be the person that puts you off giving this stage in the PMDD treatment pathway a go. I wouldn’t still be slogging it out if there wasn’t some evidence based merit to using combination HRT to treat PMDD. So I’ll let you into the upsides, the positives I’ve experienced since I’ve been on this latest hormonal rollercoaster.

Fewer migraine attacks. This is a huge one for me because for the last 2 years I’ve suffered migraine every week with attacks lasting a minimum of 36 hours and always rendering me completely disabled. Since commencing HRT I’m only experiencing attacks in the week prior to my usual period. (Usual because I’m constantly bleeding but migraine is only present when I would normally be premenstrual.) There’s a lot of controversy over the safety of using supplemental oestrogen with migraine. However it is suggested that transdermal oestrogen is the preferred way to supplement if you have migraine. Migraine is the most debilitating, painful and abhorrent condition that I live with, it’s also problematic for my mental health, so any reduction in severity, really is huge for me.

Less intrusive thoughts. I am still experiencing anxiety and it is still a symptom that can be severe and have a profound impact on my overall mental wellness. With that said though, HRT has seemed to help take the edge off of the extreme and terrifying thoughts I was experiencing prior to starting treatment. I guess in a nutshell I’m more rational. This could also be down to the year of therapy I’ve just completed, but if I’m being honest I did not feel this level headed upon completion and believe the oestrogen has (completely contradicting myself here) stabilised some of these symptoms.

Conclusion:

More time. I spoke to the amazing gynaecologist I saw back in August this week, I’ve emailed him several times and he has always replied the same day with advice. As I am still very early into this treatment method he believes to really understand if I am not gaining any benefit, we need more time. When he said this I was really fed up. Then I took stock and really considered it. I thought about what chemical menopause might look like for my family right now and discussed with my husband the idea that we go ahead now, or wait until after Christmas. I know I’m going to need chemical menopause and ultimately surgery in the next year. I know this is a given if I want to keep myself and my family safe and reclaim my life. Because I know, categorically, that I can’t do another year of living with PMDD. The question I have to ask myself is could I do another few months of living with this slightly shorter, slightly improved, less disabling, watered down version? And the answer was, probably.

So that’s the conclusion for now. I also discussed with the gynae my fear of feeling worse when initiating GnRH injections. He proposed the idea of trialling a nasal spray in the first instance instead. I felt even via transient email communication that he had heard my fears. Ultimately, I feel as though I still have some options.

To assist with the reoccurring bleeding, hot flushes, sweating, and the intense fatigue, we are going to introduce a third pump of Oestrogel. I’ll start taking this at night and continue with my two pumps in the morning whenever I feel ready. Again – not going to pretend I’m not concerned this could make me feel worse initially, but even having the option and wiggle room to tweak the dose, is a blessing in itself.

Once again I’m ending this rather complex post with hope in my heart. I’d like to thank everyone who has answered questions for me too, it helps, and especially my fellow #PMDDpeeps over at IAPMD I am lucky to have such knowledgeable women in my corner.

Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.

How did you obtain diagnosis?

This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.

Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.

You also have fibromyalgia, do symptoms of both conditions overlap?

In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.

Can PMDD come on at any time in life?

Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.

Is PMDD a disability?

Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.

Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?

After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.

Are palpitations a symptom of PMDD?

PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.

Summary

  • PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
  • There are a range of treatments used to treat PMDD and their effectiveness is very individual.
  • PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
  • PMDD can occur at any time during a person’s menstruating life.

I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.

HRT to treat PMDD – Week 3

If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.

Insomnia

So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.

Anxiety

Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.

A few other notable side effects have been:

  • Hot flashes
  • Nausea
  • Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.

Hope

But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.

I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.

Positive changes

Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.