When I speak to customers on the phone, a significant proportion of them tell me that their pelvic pain symptoms started with the onset of menopause, a pregnancy, or a hysterectomy. Younger women often report that their symptoms change during the menstrual month and when my own PGAD was more of an issue, I certainly noticed that my cycle affected things – I still do sometimes. Although there is no hard and fast rule that connects hormone levels to pelvic pain disorders, it is known that low oestrogen can increase propensity to urinary tract infections and women with interstitial cystitis are therefore often prescribed vaginal oestrogen cream. For some this is very helpful; however, in others it actually worsens symptoms. The same is true of other pelvic pain conditions like vulvodynia, lichen sclerosus and vaginitis. While most medical professionals feel that hormonal factors may be relevant in IC and related conditions, there is a lack of consensus as to which hormones, at which levels, may hinder or help. Not all pelvic pain patients are offered hormone testing and when they are, they are often told that their blood work is showing normal results. However, does this mean that the investigation should stop there? I think not.
When I speak to pelvic pain patients – especially those with IC, I almost always advise them to get their hormones checked out properly. By ‘properly’ I mean checked in a really comprehensive way, beyond the basic few blood tests usually carried out on the NHS. It’s expensive, but I believe it’s very worthwhile if you have a chronic health problem that seems to be influenced by your menstrual cycle or whose onset coincided with a significant hormonal event.
When doctors check hormone levels, they usually do this using serum testing. The problem with this is that the majority of steroid hormones in the blood are bound to carrier proteins and are not actually available for the body to use. They show up as present on the test, but they are not actually usable. You might therefore appear to have normal or even high levels of oestrogen, when in actual fact hardly any is getting into your cells to be utilised. Also, a blood test only measures hormone levels at one very specific moment in time; however, for menstruating women, hormone levels should fluctuate over the month. Although the reference ranges do take into account the time of month, they are still quite broad and a single blood test gives no indication as to what is happening the rest of the month.
Fortunately there are two other ways that hormone levels can be tested to provide a more comprehensive picture of what is going on. To my knowledge, neither of them is currently available on the NHS, but individuals can obtain them without the knowledge or assistance of their GP, so that is no problem if you have the means to pay. The first way you can carry out a thorough hormone check is by salivary hormone testing. I have had this done twice and in both cases I have used the Rhythm Plus test from Genova Diagnostics. It costs £235, so it’s not something I’ve done lightly or could afford to do very often, but I think it provides invaluable information that helps me get to the bottom of my health issues. If there is one thing I’ve discovered, it’s that nothing is more important than your health, so I’m prepared to go without a lot of material things to ensure I get the very best testing and healthcare I can afford.
With the Rhythm Plus test, you spit into little tubes on twelve different days of the menstrual month and then on a single day you also take five extra saliva samples that measure your cortisol, DHEA and melatonin levels. There is a cheaper version available where you just do the twelve days of reproductive hormones and skip the adrenal hormones, but my health issues dictate that I need to measure both. You freeze the samples and then when they’re all collected, you post them to Genova’s laboratory to be tested. The results are emailed or posted back to you and you get to see numerical readings for each of the analytes, so you know exactly how far in/out of range you were. That’s much better than just being told you’re low or high – knowing the proper numbers is far more illuminating. It’s also great to see what is happening across the follicular stage, ovulation and the luteal phase, instead of just having a single set of results for one day.
Unlike blood tests, saliva tests measure the amount of free hormone that is available to act on a target tissue – the amount that is likely to actually get inside cells and influence them. Since only free hormones are responsible for the symptoms or lack thereof that we experience, it makes sense that we should measure those and not the bound hormones. I’ve found most NHS doctors fairly dismissive of salivary test results, but saliva testing has been used in clinical research for over 30 years and there are some doctors who will take it seriously. In the early days of salivary testing, there were problems regarding accuracy of results, but nowadays saliva tests are considered to be the most accurate way to measure bioavailable hormone levels.
Complementary healthcare practitioners are often quite clued up on salivary testing, so if your doctor is dismissive and you need help interpreting the results, you should have no problem finding a professional who can assist. Indeed, when you book a test with Genova, you have to do it through a practitioner, so they will be happy to make an appointment with you to explain your results and work on a treatment plan if you want them to. I use Smart Nutrition as my practitioner, but a quick Google of something like ‘Rhythm Plus testing’ should throw up lots of others who can procure the test for you too. With Smart Nutrition, you are offered an appointment, but you are not obliged to have one. The £235 fee therefore includes their admin costs of booking the test for you, but does not include any bespoke advice you may wish to get afterwards.
An alternative to salivary hormone testing is DUTCH testing. This has nothing to do with The Netherlands, but stands for Dried Urine Test for Comprehensive Hormones! It is actually carried out by an American company called Precision Analytical, although in the UK it can be ordered from Regenerus Laboratories, among others. There are various options offered – one that does just sex hormones, one that does just adrenal hormones and one that does both. There is also a cycle mapping version that is carried out on multiple days of the month, similar to the Rhythm Plus.
I got the version that measured both sex hormones and adrenal hormones over a single 24 hour period. I can’t remember how much it cost, because I got it on special offer thanks to my mum attending an online practitioner lecture by Dr Carrie Jones laid on by Regenerus – it was the only one that was on special offer, so that is why I chose it. It currently retails at £259, so again it’s not a cheap option, but it is very thorough.
To perform the DUTCH test, you urinate onto test strips four times in a day (with a fifth provided for an overnight sample if you wake) and you leave them to dry. You then post them back to the lab for analysis. It’s even easier to perform than salivary hormone testing, as producing the required 3ml of saliva takes a surprisingly long time (around 30 minutes in fact!) and if you’re monitoring your hormones for reasons of an IC nature, you probably have numerous opportunities in a day to urinate on the stick! The downside is that you are supposed to restrict your fluid intake slightly before each test strip, but I didn’t restrict mine as much as advised as I was concerned about getting cystitis, and my test worked out okay.
The DUTCH test is incredibly complex and I am nowhere near qualified enough to attempt to explain all of the things it tests and how it works. In essence though, it measures conjugated hormone levels (the form in which hormones are excreted after they have been used by the body, which reflect bioavailable levels) and also measures hormone metabolites (the bits and pieces each hormone is broken down into). In this way it provides a picture not just of the hormone levels available, but the extent to which you are properly utilising them. Some hormones may be broken down into both ‘good’ things and ‘bad’ things and the test reveals whether your breakdown process is adhering to appropriate ratios of each. It’s a little like rummaging through someone’s rubbish bin to see whether the food they buy gets eaten or thrown away, and what sort of litter they create. The DUTCH test shows not just the levels of hormones that are available for you to use, but whether or not you are actually using them and what hormone by-products you create in the process. If you are producing too much of the wrong sort of ‘litter’ there are treatment protocols you can follow to help your body metabolise your hormones in healthier ways. It really is very comprehensive.
I warn you in advance, you WILL NOT be able to understand your DUTCH test results and create a treatment plan on your own. I regard myself as fairly clued up on these matters and I’ve watched the Dr Carrie Jones webinars in detail, but although I could see what was good and bad on my test results, I had no idea how to use that information. Unless you have some quite advanced endocrine knowledge, you will incur extra costs in finding a practitioner to work through the results with you. Because DUTCH testing is relatively new and is complicated, this is easier said than done. There are not many practitioners (including GPs) who are able to do this yet, although Precision Analytical and Regenerus Laboratories may well be able to point you in the right direction. After sitting on my results for several months, I recently consulted with Planet Naturopath who talked through them with me. I am hoping that his guidance will help me to bring things back into balance.
I should mention that I did not have the salivary tests or the DUTCH tests run for anything to do with pelvic pain, although my first salivary test was done during the time when my PGAD was at its worst. However, most pain and disease is really the result of imbalance in the body, so if you have any condition at all that seems to ebb and flow with your menstrual cycle, or that began around a significant hormonal change, then I really do think it is worth investigating and correcting any endocrine imbalances. Conditions that I’d definitely recommend hormonal testing for include:
- Mood disorders (anxiety, depression, panic attacks, irritability, moodiness, etc.) that haven’t fully responded to psychological interventions and dietary changes, or that are noticeably worse at particular times of the month.
- Interstitial cystitis, persistent genital arousal disorder, lichen sclerosus, repeated urinary tract infections, and any other similar conditions.
- Vaginal dryness and painful sex.
- Inability to get pregnant or stay pregnant.
- Polycystic ovarian syndrome and endometriosis.
- Acne and other skin conditions.
- Weight changes, or weight that seems inappropriate for diet/lifestyle.
- Breast changes, or abnormal breast growth in men.
Although most of the above are caused or exacerbated by more than one thing, it cannot be helpful if our hormones are out of whack. Detecting and correcting any imbalances in hormone levels or their metabolic pathways can only assist us on our journey to improved health. Although it’s expensive, it can help to take the guesswork out of treatment strategies and, in the long run, can save a lot of money in wasted supplements and unsuccessful therapies. I very much wish that I had known about salivary hormone testing when I was much younger (DUTCH would not have been available then), as it may have had the potential to save me a lot of miserable days and many thousands of pounds! Hopefully this blog post will point some people in the right direction a lot sooner and enable them to regain their health more quickly.
Before I finish the post, a quick word to any male readers! Although much of the material here has been addressed to the female reader, it is equally important that men’s hormones are balanced. Genova Diagnostics offer comprehensive salivary testing for male hormones and the DUTCH test may also be taken by men. I’d recommend any men who suffer with any of the applicable above conditions or their equivalents investigate and correct their hormone levels too.
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