I’m sorry that its been a while since I last posted. Sorry for myself and the advantages of posting for ‘me’, as well as anyone else that may be waiting for an update. As I look back at my previous posts and my journey thus far, I am disappointed in myself for not keeping this blog live. This is because I feel its a good idea to look back on progress and to read how far one can travel. So, this blog is a longer read than previously I’m afraid.
In my last post I wrote about my change in my HRT prescription so I will just update on that part so far. I started on 4 pumps of oestrogen in March 2019 and over time that has further increased to 8, eventually 12. Have you ever watched a video or read how to use gel? Google it, you will get a good idea how challenging it is to apply 12 pumps of gel and hope you get a good absorption rate š I continued with one pump of testogel (testosterone) and Utrogestan (vaginally) and for short periods of time my symptoms have generally been well managed. I continue with the clean eating, alcohol on special occasions and plenty of exercise. Exercise, more than anything else is the one thing that keeps my mood level, particularly running, as I do get good bursts of serotonin!
I look back on my peaks and troughs. I now know when my oestrogen levels are at their optimum. When they are good, my life, my social interaction with others, my running, my zest for life is at its best. I can look back now and tell you when things start to go a bit array. And this is the problem. When my oestrogen levels start to decline, the changes are very subtle. I feel a little tired, I have the odd night where my sleep is disturbed, I feel more irritated than usual.
AND THEN WHAM! It hits me like a speeding train and I feel like I’m back to square one. Its not until I get a blood test that confirms it and my oestrogen is increased that I start to feel better and look back at how bad it was getting. And this is because its so gradual. At the time, I think it’s just life, ie my mother is ill so I worry, my finances are not looking good, I worry, the weather is miserable, me and Chris have argued, and the list of things that gets me down are to blame for the way I feel. (RIGHT?)
So now I am doing a quick fast forward to August 2020. The last 6 months haven’t been great for anyone really and yet again I blame something else for feeling so low. Its COVID and lockdown this time however, its relevant isn’t it? Of course I should be feeling low, life just isn’t going as one would expect. We are all experiencing it, we are all suffering, so why should I feel anything different? However, a blood test has confirmed my suspicions. I didn’t absorb the oestrogen patch well and now I am no longer absorbing enough gel to keep my oestrogen levels at their best. ‘Don’t fear though Lisa, we have a plan for you.’ As always my menopause nurse is full of optimism and we agree that I will have an implant of oestrogen and testosterone. As its obvious that I am not very tolerant of the Utrogestan, we also agree that I will try the Mirena coil. This is the only part of the treatment I am concerned about though, as I didn’t have a good experience of it back in my 20’s. It’s important to have an open mind though so I generally feel really excited that this plan will be good for me. I have done a lot of reading about the implant and with no concerns about the rate of absorption, this could be it! Apparently this is not the final option either. I could even consider a total hysterectomy. Lets hope it doesn’t come to that though!
So at my August appointment Nicky explains to me that she will start me on a 50mg implant that should last about 6 months. It is inserted subcutaneously in my abdomen with a testosterone implant placed on top. I have a local anaesthetic to numb the area and it is a pain free experience. A few steri strips and a dressing applied for 5 days and that’s it! If you are ever offered this, please do not worry. You can go about your normal life with no concerns at all about recovery. A doctor is also present to insert the merina coil. We have a little giggle. I tell her that I have used Vagifem for the past 5 days to make sure I am nice and moist. She says ‘thank goodness Lisa, this is going to make my job a lot easier.’ Afterwards I did wonder why all patients who have this procedure done are not prescribed Vagifem to use prior? Its not the nicest of procedures, it’s a little uncomfortable however its done and dusted within minutes. You should expect a little bit of abdominal discomfort after and maybe for a few days (a little like period pain?) but luckily I felt ok. So off I go, with confidence that this is my life saver. So, the advice I leave with is, use the oestrogen gel for a few days and get in touch if I have any concerns. In 3 months I will have a blood test to check my oestrogen levels.
24th September 2020 – its just 6 weeks since I had the 50mg implant and I look back and realise that I have experienced a progressive decline. I have had nights sweats, sleepless nights, feel irritable, have anxiety and my exercise regime that I would normally enjoy has more or less come to a stand still. I convince myself that it is hormonal and get in touch with Nicky. I have a blood test and its confirmed, my oestrogen levels are 191 and I cry with relief when she rings me because I honestly thought that I was going mad and something was wrong with me. When we talk on the phone, I ask her why we didn’t use a 100mg implant? We always knew that I seemed to burn a lot of oestrogen so why wouldn’t I be offered an increased dose to start? Apparently, all women start on a lower dose of 50mg because this implant is absorbed very differently to topical oestrogen. Bearing in mind I seem to respond well to blood levels of around 600-800 we agree that I will start using 12 pumps of the gel until I can have another implant. And indeed to god, within 3 weeks I start to feel normal again.
15th October 2020 I have a 100mg implant inserted subcutaneously and over the next 5 days I gradually withdraw from using the gel. Thats a big relief because my day revolves around applying so much gel its ridiculous:- shower in the morning – apply 4 pumps until its dry, then apply another 4 pumps in the afternoon, shower in the evening and apply another 4, and that’s on the days when I am not working! I have opened pumps of gel all around the house and whilst we are watching tv in the evenings, I’m applying my gel. What a sight.
We agree to get a blood test 4 weeks later just to check on my oestrogen levels and off I go again! Week commencing 16th November I start logging returning symptoms – disturbed sleep, nights sweats. The pattern resumes but I do wonder if I’m just tired. I worked a full week so maybe I have just overdone it. Alas, the blood test confirms a result of 451 which is still low for me and I start feeling like there is just no hope for me!
I start using 8 pumps of gel a day again and to top it all off now I am experiencing side effects that I haven’t experienced before. I have hives (?) or high levels of histamine (?) or allergic reaction (?). I am aware that many women experience this in menopause so I can only assume it’s one of the above. It’s only on my forearms so I refrain from applying the gel to my arms and just use my inner thigh. Not funny when you come to apply those 12 pumps of gel which I increased to once again when my symptoms started getting even worse. Jeez, can this get any worse? So I have to wait for another appointment to have another implant. During December my sleep pattern was absolutely terrible. I stopped running and exercising because if you don’t sleep you don’t feel like doing anything the next day!
It’s post Christmas. December was a terrible month, symptom wise. I stop caring about myself and generally looking after myself now. I am eating too much and drinking too much alcohol. Thats what most of us do anyway at Xmas isn’t it? But for a menopausal woman its never a good idea. I know this, but do I stop? Nope. I drink to help me sleep at night as well as to add some light relief to my day. All the weight I lost up to Xmas starts piling on but I don’t really care. As soon as my oestrogen levels start to improve as so will my nutrition and diet. This is the pattern I regularly fall into. I know its not good for me, but at the moment I just can’t motivate myself to change. And then there’s bad news that keeps me on that roller coaster of good/bad emotions. The clinic is closed because we are going into tier 4 lockdown. Its not classed as an essential service and all f2f contact in clinics is now suspended and staff are redeployed to what is deemed to be essential. I am really devastated. I just cannot believe that how I am feeling and the treatment for me is not classed as essential. Rather than go into it, its probably better that you read over my previous blogs which describe how bad the menopausal symptoms have been for me. At one point in work, I thought I was going to have to walk out. I suddenly felt very dizzy, started crying and felt an impending feeling of doom. Palpitations, fearful, anxiety. As it happens I am wearing full PPE on a hospital ward and no one notices my ‘mini meltdown’. I tell myself ‘pull yourself together and stop allowing these feelings to overwhelm you!’
I suppose I should be grateful that I have a plan B. I go back to 12 pumps of gel again and hope for positive results. SOON!
Here’s the positive – the winter temperatures are setting in. However I sit in the lounge half naked, with Chris who is wearing his arctic onesie, because every evening I am boiling. Poor Chris wants the heating turned up though because he is so cold. So we light the coal fire which he sits on top of and I turn off the radiator in the bedroom. You have to laugh and picture the scene I suppose!
So after contacting and making an informal complaint through Nicky I get a call from Jane Dickson who is the clinical director of services for Aneurin Bevan University Health Board. I go through absolutely everything with her and generally cover why I am feeling so aggrieved that the clinic has closed. How it affects my quality of life etc. She tells me that as soon as the clinic re-opens, I will be first on the list for my appointment. I have to accept it don’t I? Then I write to my assembly member for Newport and convey the same message. I contact FTWW and once again start the campaign to get better services for women. Its a constant battle. Why on earth do we only have one menopause specialist in ABUHB, why aren’t services offered through GP’s, why do women have to wait to be seen by a specialist? If more than 50% of the population are women, surely we should expect a better service. Indeed to god, I get the same response that I got last time I wrote to the Senedd. A standard letter telling me that it is up to the local health board to decide what services are provided. Its a constant battle and I know that its not just ABUHB, it Wales wide as it is nationwide! But is it acceptable? Absolutely not!
During this waiting time I start to do more research on the oestrogen implant because I am worried that I have had 1 x 50mg implant and 1 x 100mg in just 8 weeks. I thought that they were meant to last up to 6 months? I find one menopause specialist based in the UK that writes about implants. A clinic run by Professor Studd who has built up a fantastic reading profile which has a web based support service – https://www.londonpmsandmenopause.co.uk
There’s a ‘contact us’ button so after reading through the wealth of information maybe it’s time to get a 2nd opinion. Within a day or 2 I get a response from someone who offers to call me. A consultant from the clinic talks me through a number of things, asks me lots of questions and tells me that I have to give it time and be patient. Apparently, when your oestrogen levels are so low and you have the implant, all the areas in your body that need it, suddenly zap as much oestrogen as it needs from the implant so after the first one its not unusual to need a 2nd within a short space of time. It’s possible that this could occur for the 3rd or 4th before it starts to settle down. The consultant also tells me that Nicky has been very brave in giving me such as high dose as they would normally start with a 25mg implant. So Nicky has been very brave to agree to 100mg. I learn though that the risk of high levels of oestrogen are not risks that carry too much concern. In fact, the risk is low level to none in terms of tachyphylaxis. She reassures me that after the 3rd, maybe 4th implant, I will really start to experience the positive benefits of the oestrogen. I long for that day!
I get the call I’ve been waiting for and have the next 100mg implant on 11th February 2021. My testosterone levels have declined too, so another 100mg is inserted subcutaneously on top of the oestrogen. I have a long conversation with Nicky and I particularly emphasis that I want to continue with the 100mg despite her concerns and I am willing to take the risks, particularly with the tachyphylaxis. She agrees, its my choice when weighing up the benefits and the quality of life aspects. She really is a lovely nurse, I just wish we had more Nicky’s to rely on in the health board. I come away with a similar plan B for when the implant starts to wear off. This time though I have the oestrogen spray Lenzetto.
So, today its Saturday 20th February. 11 days after my implants have been inserted. I stopped applying the gel 7 days ago and I am already worried. I am not feeling that good. I have felt irritable all week. The only time I have felt ‘OK’ is when I have been alone. No pressure, no one having any expectations of me. I feel intolerant. My resilience is low. I am already wondering if the implant is doing its thing. I wonder if its life, is it just a bad week, is it lockdown, is it the miserable weather, or is it hormonal?………………………………………………..
I just need to leave this here though – I am clean eating, I am limiting alcohol intake, I am brewing kombucha tea, kefir milk grains and eating less meat. I am making sure that my gut microbiome is as healthy as is achievable in the hope that it helps with my menopause journey
WISH ME LUCK – see you soon
How the Menopause nearly beat me 