HRT

HRT to treat PMDD week 19

November 27, 2022 — Leave a comment

Can’t believe it’s been 9 weeks since I last wrote an update on my HRT journey. A journey is exactly one of the words I’d use to describe it. There’s so much in the media at the moment about the use of hormone replacement therapy, and often strong opinions both for and against. I’d say for me, I’m still pretty on the fence.

So what are the three words I’d use to describe this most recent cycle? Improved, unusual, and you guessed it (a) journey.

Improved. Because, for the first time since commencing treatment I felt a really significant improvement in psychiatric PMDD symptoms last month. The level of anxiety was what I consider bearable (no anxiety is nice, but when you’ve felt close to the edge every month for decades, bearable is considered good!)

Unusual. This one is a weird one. I can’t work out why my symptoms were reduced. I’ve been using ovulation strips when I think I’m ovulating to confirm that I’m still cycling, and unfortunately- I am. So it’s not as if there was some kind of ovarian wipe out that can be thanked for the minimal mental turmoil. But we celebrate small wins here. And it’s nice to report feeling less tormented, for once.

The Journey is ongoing. In fact, I’m certain it always will be. Whether that be post op – or continuing with my reproductive system ‘in tact.’ I know this, because trauma and our experiences of it never really leave, so even in the absence of horrific PMDD my mind is still naturally searching for worse case scenarios. It can pluck them so easily from seemingly thin air!

Observations

I feel I need less oestrogen around ovulation and more straight after it. A steady dose of high supplementation is not always the missing jigsaw piece. I am not medical in any way, but I know my body, probably better than I know anything. If I have too much on the lead up to ovulation, I become anxious in follicular. This is less than ideal because this should be my ‘good’ week. So I am going to talk to my gynaecologist about tweaking dose and admission around this time, and see if it results in a positive change.

I’ve started planning my life around PMDD again. I used to do this around my period specifically, but now I focus solely on my moods and when they’re likely to turn. It’s not ideal, but it is necessary to get the best out of my days.

I’m about to ovulate again any day now and my usual body aches, shingles pain and mouth ulcers are creeping back in, as they do every month around this time. So it’ll be after next week that I’ll tell if I had a one off better cycle last month, or if HRT can indeed finally be thanked for the decrease in negative mood fluctuations. It’s a rollercoaster that’s for sure, but anything, any scrap of positivity is better than PMDD itself. So like with most minor improvements in my life, I cling to them with fervour and hope for the best.

Because in the end, despite science and medical intervention, hope is what keeps me going. ❤️

HRT update – Week 10

October 2, 2022 — 1 Comment

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.

HRT to treat PMDD – Week 5

August 17, 2022 — 1 Comment

This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.

Bloody

I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.

I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.

Enthusiastic

I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!

Brave

I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.

Gynae Appointment

I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.

What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!

We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)

No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.

I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.

HRT to treat PMDD – Week 3

August 3, 2022 — Leave a comment

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.