Taking hormone-based medications for early menopause

So once you found the right HRT, can you tell me what that was like for you in terms of your physical and emotional state?

Yeah, it was [laughing] amazing. Finally I was feeling fine after so long because I had so many different times of mood and my head was going crazy because I couldn’t control myself, or I was too excited, or I was too depressed. And I remember sometimes I was in working in front of the computer and I was so so sad that I couldn’t control. And I went to the toilet and I stayed there crying just because, like, was a really crazy feeling that I didn’t know exactly what it was that I was feeling. So it was really difficult. When I started to feel normal again it was a relief.

I think initially, even when I was, in my early twenties and I went on the pill, I always had issues with the medication. It never would regulate my period and I’d get a lot of bloating and it never quite seemed to work. So when they put me on the Hormone Replacement Therapy, I was a bit concerned. And, all those kind of symptoms came back.

Yeah, I – there were times when, you know, I thought I should go back to that GP and say, “Yes, I think I’m depressed, but I think it’s this medication.” [laughing] “Now give me some of that as well,” or you know, I actually started to feel like maybe I do have a mental health condition, because this medication’s making me totally irrational and, it’s not regulating anything anyway. So, the doctors at [women’s health clinic] were fantastic. They would say, “Oh well, let’s try this,” and so we would try – I tried different types of combinations of tablets and I had an implant for a while, which seemed to work fairly well. And the combination of that and the testosterone cream, which I had to get from [state name], because they, at that stage, didn’t sell it in [state name]. So that was a pain [laughs].

And in the end you just get worn down. You just end up feeling, “I can’t be bothered with this anymore. Does it really matter if I go through menopause? I’ve come to terms with the fact that, okay, I’m not going to have any more children, but does it matter if I’m menopausal at 40?” In hindsight though, you do definitely feel a lot older. Your body feels a lot older when you eventually, have kind of really gone into menopause totally.

There’s a few different pills that I tried over time before I settled on one in particular. Yes, it helped in terms of getting rid of the hot sweats and the vaginal dryness and breasts feeling like you’re a young woman again, those sorts of things. But I can really only probably explain the feeling as, it’s like you haven’t been plugged into electricity overnight. It’s like there’s a spark or there’s something missing in you even when you’ve got those symptoms sorted out, there’s a vitality or something that made life easier and energetic and sparky before, that’s not there.

It’s definitely a lacklustre feeling and again, it’s hard to know what you put down to being the treatment you had or… I had a lot of treatment. Some people are diagnosed and go straight on to transplant, for example, and have a lot less chemotherapy. I’d had a good hard year of chemo before I had the transplant, followed by radiation. If I hear the words the “new normal for you” again, I’ll probably scream. But I was into long distance running and half marathons and a bit of a gym junkie before I got sick and the thought of even being able to go for a walk, I just didn’t feel interested which just wasn’t me. Something’s missing. It’s just really… It’s like your pilot light’s gone out.

I think in regard to the HRT and which type, I had looked, that information up. I can’t remember whether that was on Jean Hailes [website] or whether that was on something else. But I had looked up the different types of HRT that were appropriate for my surgery, for post my surgery and so I have a patch. It’s an oestrogen patch and so that’s what they prescribed. I knew that that was what I was sort of after and I was happy with that. They’re irritating so I struggled with having it on for the first few, the first couple of months. Even now, sometimes the skin becomes very irritated. So I wear one for a week and then take that off and put another one on.

The patches are slow-release and you wear it for a week and you take one off and just put, another one on in a different position on your lower abdomen. I guess some people might know about nicotine patches. It’s like a nicotine patch, just a little clear patch that you stick on.

He immediately prescribed HRT for me, because he did say to me again, the whole age, “You shouldn’t have to go through the symptoms, put you on HRT.” My problem is that when I was very young – when I was nine I had a disease that busted out my immune system, and so I’m allergic to a lot of tablets and chemicals and that sort of stuff, which isn’t so bad. In the fact, I have to eat quite healthily and organically, but can be frustrating because I can’t take any of the strong pain killers. Like the hysterectomy I had PANADOL [paracetamol] for a hysterectomy because I can’t take the strong pain killers.

But he put me on HRT and the tablets started bringing back my migraines, so I was getting migraines every couple of weeks again. So I said to him, “Well, I can’t do this. This is just too debilitating.” So then he put me on HRT patches and it said in the side-effects that if you get a rash from the patch, stop using them. I didn’t just get a rash. They actually burnt my skin. I had like a burn mark where the patches were. I put up with it. I kept trying to fight through it thinking, “I don’t want the hot flushes.” But no, when I was having an actual burn mark that wasn’t going away for like a week in between the patches I thought, “No.” So then I went back to the doctor and I’ve tried different non-HRT, but other prescribed medicines that have been shown to assist with menopausal symptoms. None of them really worked. So I stopped taking the last of them early this year because I’m just like, “No, I’m taking tablets and I’m still getting hot flushes and everything else, so,” – and I hate taking tablets. So I’m just learning to put up with the hot flushes, which I’m having a wonderful one right now. [laughs].

At that point if I’d never had sex again I couldn’t have cared less. And, yeah, things certainly did dry up so to speak, and it hurt; it actually hurt. And I just wasn’t into it.

It upset me because I’d sort of lost the feeling of what it was like. And I knew I was missing out on something and I thought, “Well, maybe if I do HRT that might fix it and also do the testosterone cream.” Which my friend had told me she had been on the testosterone cream and things improved, wildly for her. And I thought, “Well, maybe that’s what I need.” And things did improve for me after I did the testosterone cream and the HRT. It was just phenomenally better. [laughing] So, yeah, it just wasn’t as dry as I had been and I had a sex drive again, where – there’d been just completely non-existent.

I had an implant for a while, which that seemed to work fairly well, and the combination of that and the testosterone cream, which I had to get the testosterone cream from South Australia, because they, at that stage, didn’t sell it in Victoria. So that was a pain [laughs].

And also with that, I had to have regular blood tests to check my levels of testosterone, because being a cream, you can’t actually regulate how much you’re putting on, so you had to try and remember how much, and you’d be rubbing it into the side of your arm here, or into your leg. And then every month or something, I’d have to have a blood test to check that I wasn’t overdosing [laughs]. Yeah, and that was great for my sex drive [laughing] and energy levels, but I did notice I was becoming hairier [laughing].

1. No TGA approved implant is currently available in Australia.

There was a big issue with supply of a particular dosage within the HRT range that I was taking and it was hard to get for months. So then I was on the phone to my endocrinologist to ask the question and she said, “Yes there has been an issue, you can take a lower dose which should be fine but you might get some other symptoms, not symptoms, you might experience some other things as part of that but that should be okay,” so I went to that, then they got more stock in.

I was receiving differing information as to why there was a problem with supply depending on which pharmacist you speak to. But there was a lot pharmacists who were out of supply and that was concerning because I actually thought, “My goodness this now is a bit of my lifeline” and I’d read an article in the paper about someone not being able to get a hold of it and how it affected her, like it sounded probably quite dire for her if she didn’t have; the headaches and that were quite dire for her if she didn’t have it and I thought, “My goodness this is really important here” and the comments in the paper were if it was testosterone or another drug or something, of course we’d have it on the boat in no time.

But that they weren’t making it a priority so some people said it was the market here, it’s a long way for it to come from overseas to get here and so they only just sort of dribble it through and don’t give a huge supply because they want to make sure they don’t lose it, that the stock is, is all dispensed and sold. So there were a few issues I think with supply. I believe now most of them are resolved but not fully. I still don’t have confidence when I go to a pharmacist from month to month, I don’t feel necessarily confident that they will have it in stock, hence I’ve now got a relationship with the pharmacist where he will keep some aside for me when it comes in and as long as I pick it up within that certain timeframe he’ll keep it there, and that’s been reassuring.

But something certainly if it continued, it was something I was going to have to may be take up further up the line or hope that the endocrinologists and people in those sort of areas would try and act, petition for something to be done. But as I said, it hasn’t been quite that dire because I’ve managed to either get the substitute or get that. But I’ve gone a bit between the two which is the two different doses which is probably not ideal. I would have preferred not to be doing that but it’s just been the reality and I’m hoping that this kind of resolves itself in the next maybe few months because otherwise, it’s something that I’ll be taking regularly for the next seven to ten years. So it’s not very comforting to think that it might not be available.