This month’s blog post is going to be rather short and vague, but I hope it will turn out to be valuable! The PGAD survey has been running for over 18 months now and I always have a skim read of the answers when I print them off. Although I haven’t started to do any in-depth analysis yet, I have noticed that a lot of respondents who meet the criteria for PGAD are listing iron deficiency anaemia as a comorbid condition. This is interesting, because there is a small amount of research to suggest that iron status might be a factor in Restless Legs Syndrome, which is thought to be closely related to Persistent Genital Arousal Disorder. Speaking from personal experience, my own PGAD became worse when I stopped taking an iron supplement, but quickly improved once I started again.

I would therefore suggest that if anyone would like to assist with further research into PGAD, that they get their iron status and anaemia status in general checked out. In the first instance, your doctor should be able to get things like a full blood count, a haemoglobin status, a ferritin level and a total iron binding capacity checked for you free of charge. If you prefer to get it done yourself, then something like this test from Medichecks might be a good place to start. (I’ve used Medichecks once before for something else. I know that I have difficulty with finger-prick tests, so I paid extra to get a nurse come to my house to draw the blood for me. It was a great service and I would definitely use both Medichecks and the nurse again in the future.)

Do be sure to make sure that you get a copy of your results so that you can see the actual values for each of your measurements. It is not satisfactory to simply have a doctor tell you that your results are normal, or in range. If, for example, the normal range of a particular biomarker runs from 50 – 200 units and your result is 57 units, you are quite clearly only just inside what is considered normal. This is different from being well inside the range with a good, strong 140 units. It stands to reason that someone at the extremes of a normal range might not enjoy the same optimal health as someone who lies well inside it.

If it turns out that you have low or suboptimal iron, you could then try supplementing to improve your levels. I actually can’t remember why I first started taking an iron supplement. It could be because at the start of my PGAD journey I read something that made me think it might be useful. It could also be because I know that iron is necessary for proper thyroid function and I once had thyroid testing done that showed borderline hypothyroid. Thyroid problems do run on my mum’s side of the family and hypothyroid is often a factor in bladder infections, which is how my PGAD all began. It might be none of these – I might just have started taking it because I have quite heavy periods and don’t have much stamina when it comes to exercise! Whatever the reason, at some point in the dim and distant past I incorporated 20mg a day of Solgar Gentle Iron into my daily regime.

Fast forward a few years and I discovered Ancestral Supplements and decided to give their Freeze-Dried Liver Capsules a whirl. Because liver does contain bioavailable iron, I reckoned I could probably afford to lose Solgar Gentle Iron from my regime. I stopped taking it and never gave it another thought. At some point, perhaps three or four months later, I noticed that my PGAD felt more niggly than it had done for a long time. I should mention that I do have to be careful not to aggravate it with triggers. If I spend a lot of time sat on my bed reading for a couple of days, it will flare a little. If I wear unwise underwear all day, that will irritate it. If I physically aggravate the area, it will be worse for a day or two. I know all of this and as long as I am sensible, I have virtually no issues with it. However, I was starting to experience PGAD type sensations for no good reason that I could think of, which was unusual and a little worrying.

By chance, at around the same time, we started to stock Ancestral Supplements Blood Vitality in the store. As I was preparing the product description, I discovered that it contains approximately 24mg of bioavailable iron per serving – ten times more than the Beef Liver. The penny suddenly dropped that I had spent a few months without my Solgar Gentle Iron and had been getting only about 1.2g of iron a day from the Liver (as I only took 3 capsules a day). I wondered if that could explain why my PGAD was bothering me more than usual! Rather than restart the Solgar Gentle Iron, which contains some fillers, I decided to try taking the Blood Vitality, which is free from fillers and is encapsulated in bovine gelatine. I took 5 capsules a day, to give me the same 20mg of iron that I had been getting from my Solgar. Within about two weeks, it struck me that my PGAD no longer felt like it was threatening to flare! Was it a mere coincidence or something more?

Well, that’s hard to say, but I was hoping perhaps we could find out together! This small study does investigate the use of iron in treating PGAD (or Restless Genital Syndrome, as they call it). I thought perhaps some of you might like to do a little research of your own. If you’ve had PGAD for a while, so that you’re broadly familiar with the sensations, the patterns, and any personal triggers, I thought it might be helpful if you started by getting your iron levels checked out and emailing me the results. If they are low, or at the lower end of the range, I thought you could then try supplementing with iron or with Ancestral Supplements Blood Vitality for about three months. You would need to do this under the guidance of your doctor or some other healthcare practitioner, of course. Every month, you could review how you had been and at the end of the three months you could see whether or not there had been any improvements. And then you could email me again to let me know whether there had or had not been any changes!

I should warn you that I don’t think iron is some sort of miraculous panacea for treating PGAD. Even when I was on iron (and again now that I am on Blood Vitality), I wouldn’t say that I am ‘cured’. I would just say that if I am sensible, I am free from symptoms most of the time. I’m only mentioning that because I don’t want those of you who are having a difficult time with PGAD to think that an iron tablet a day is going to be a complete solution. If you’re going to have rough intercourse five times a week, wear thongs every day, spend all day sat hunched over, and never do a thing to help yourself, I think it’s unlikely that optimising your iron levels will do the trick for you. As I wrote in Tiny Tips for Dealing with a PGAD Flare, I think a multi-pronged approach is needed really, certainly in the beginning. But I do think iron status might be an important factor in some cases and I’m keen to see if anyone can get their doctor on board and help to corroborate that.

I realise this is not the most scientific way of doing things, but people are not exactly queuing up to perform randomised, double-blind, placebo trials on people with PGAD. In an ideal world, I’d take about 20 of you off to some sort of retreat and we’d do all sorts of tests and experiments on you for a while! Sadly, I don’t have the resources or the qualifications to make that possible. That’s no reason to give up though – I think we can still investigate the iron connection a little and see what we find!

A couple of points are worth noting. It is absolutely possible to have iron deficiency anaemia and not realise. You don’t always get the classic symptoms of fatigue, fainting, dizziness, etc. My mum actually had quite severe anaemia and only realised when the dentist noticed that her gums were a weird colour and told her to get checked out. Because we saw her every day, we hadn’t noticed that she had become very pale and she hadn’t had any symptoms at all! Secondly, high levels of iron are actually quite dangerous, so it is important not to start taking an iron supplements without checking your levels first and to do it under the guidance of a qualified healthcare practitioner. Indeed, iron can be fatal to babies and young children, so exercise care and do NOT take iron supplements without professional instruction if pregnant or breastfeeding.

When the PGAD survey is finished and I have properly analysed the data, I am hoping to have some other leads or useful findings for you. Perhaps some more things we can research together. But this is something that has jumped out at me from my preliminary look at the data so far and I thought it might be helpful for some of you if I shared it right away. Also, I was short on ideas for this month’s blog!

Wishing you the best of health,

Tiny x

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