If you would like us to find an understanding one in your area, please contact us.

Background

HRT is an issue for people with AIS who have had surgery to remove their testes (an 'orchidectomy' or 'gonadectomy'). Otherwise the ingeniual testes will continue to produce sufficient hormones for your body, although there is a risk that those gonads will become cancerous.

When visiting your doctor or treating specialist to talk about prescriptions for HRT, ideally you should be looking to get a dose that will help you maintain a healthy lifestyle, considering that you want a quick and happy mind, strong bones, sparkling eyes, healthy skin, and good sex drive and function.

Finding just the right amount for you can involve some experimentation over a period of time. Nausea, weight loss or gain, dry skin, vaginal dryness, headaches, depression, poor memory, breast pain, bloating and fluid retention, mood swings and dizziness may be symptoms that the dose you are taking is incorrect.

Again, seek professional advice from your health practitioner to work out your best amount of HRT.

HRT Pharmacopia

Traditionally, post-op AIS women are prescribed replacement estrogens. There are more than 30 forms of estrogenic HRT available in Australia in pills, patches, under-the-skin implants, or gels. Some of these are used specifically to treat osteoperosis. The ones that we are most interested here in are selective estrogen-receptor modulators (SERMs), which are synthetic hormone replacements. This type of drug reduces the risk of osteoporosis and heart disease but appears not to increase the risk of breast cancers (see below).

Premarin is the commercial name for compound drug consisting primarily of conjugated estrogens. Isolated from mare's urine (PREgnant MARes' urINe), it is manufactured by Wyeth Pharmaceuticals and has been marketed since 1942. It is available in oral (0.3/ 0.45/ 0.625/ 0.9/ 1.25mg), IV, and topical form.

Progynova tablets contain the active ingredient estradiol valerate, which is a naturally occuring form of the main female sex hormone, oestrogen. Progynova tablets are a continuous, oestrogen-only form of HRT. As they only contain oestrogen, they are most suitable for women who have had a hysterectomy/orchidectomy.

Progesterone is often considered unnessary for AIS women by doctors as we have no uterus. However, some evidence suggests that progesterone therapy combined with estrogen replacement may lessen the long-term risk of breast cancer, although this type of therapy is debatable. Progesterone can be prescribed via birth control pills (which also contain estrogen) but can lead to melasma, so be careful in the sun if you decide to go this route!

Testosterone is an alternative hormone replacement therapy for AIS women. The theory goes it is the hormone produced naturally by AIS women prior to having our testes removed, and the hormone is aromatised by the body to produce enough estrogen to maintain feminine features and bone health. Insensitivity to androgens means that virilisation (eg. deepening voice, reduction of breast tissue, pubic hair) is unlikely to occur. Happily, many users have reported benefits including improved psychological stability and libido.

Currently these HRT drugs are not subsidised by the Pharmaceutical Benefits Scheme.

HRT for AIS Men

We have quite a lot detailed info about DHT treatment on our AIS Men page.

Please contact us for more specific information. We'd be happy to put you in touch with someone who is knowledgable.

PAIS or CAIS?

HRT may be of use for individuals who are not certain whether they have the complete or partial form of AIS. To test for responsiveness to androgens such as testosterone one could take a short course of androgens, which are available by prescription from your medical professional. Reponsiveness to androgens might include some thickening of pubic hair, raised libido and confidence, increased muscle tone, etc. which may indicate PAIS. However, if insensitivity is complete, then to nothing will happen. (Note that some people will seek out androgen pills as a recreactional drug because it gives a feeling of euphoria and supreme confidence within an hour or so after consumption - so if it works at all, then it works that quickly!)

Consult with your medical professional for more information.

HRT and Breast Cancer Link

For the past few years, there has been a growing disquiet around the emerging body of evidence suggesting a link between estrogen HRT and breast cancer (and now even a possible link to lung cancer), which is a potentially huge problem for us AIS chickies.  Even though the research focuses older women who use HRT for ease of discomfort associated with menopause, recent reports from the the University of Texas and a Cancer Council NSW and Australian National University joint study raise heaps of concerns. Are women with AIS at a highger risk than the average, seeing as most of us take HRT a lot longer and from a younger age, post-orchidectomy?

For an answer to this important question, we decided to ask Honourary Life Member of the AISSG Australia and practicing gynaecologist Dr Sonia Gover for some advice, and here's what she said:

"The basic information is that 1 in 12 women in developed countries get breast cancer.  If you put 10,000 women aged >50 years on HRT for 5 or more years you would see an excess of 6 cancers (in a comparative group of women not on HRT there would obviously still be a significant number of breast cancers..so the excess is the number above this background rate)....but this amounts to less than a 1 in 100 increased risk... No there is no oestrogen that is better....and of course the media forgot to mention that there is a reduction in bowel cancer in HRT users.

"The question for women with AIS is whether to continue HRT beyond 50 years of age.  For most AIS women <50yrs the evidence is reasonable clear that the benefits of hrt on bones and heart outweigh the negative...the whole argument is about prolonging the exposure of breast tissue beyond menopause (ie about 50yo).  I am not aware of any specific data on women with AIS, and would like to do research on this topic..I think it is very uncommon (breast cancer in males does occur - making up 1% of all breast cancers)...in fact I have not seen any reports on it - possibly the constant hormone levels of HRT (vs the fluctuating levels that women with functioning ovaries) may offer some benefit...."

The jury is still out - watch this space!

Good Boobs

Please note that many women with AIS may from time to time find that their breasts become sore with some tender lumps. While you should always seek professional advice, this kind of soreness can be quite normal. Following is a daily course of vitamins that the the Wesley Breast Clinic at Wesley Hospital in Brisbane suggests for overcoming tough titties (ie. hormonal breast pain) so as to maintain peak breast health:

Vitamin B1 - 100mg daily for six (6) weeks. If satisfactory relief, continue. If no relief cease and move on to Evening Primrose Oil. If some relief but not adequate, continue and add Evening Primrose oil.

Evening Primrose Oil - The dosage of Evening Primrose Oil is 1000mg, 3 capsules per day. This may be taken as a single dose or in two or three divided doses. The active ingredient is GLA. There should be at least 100mg GLA per 1000mg capsule of Evening Primrose Oil. Continue on this dosage for three months, then re-evaluate.

After three (3) months on Evening Primrose Oil, if no improvement, cease and consider referral to your local Breast Pain Clinic. Is some improvement, but insufficent, consider referral to your local Breast Pain Clinic. If adequate relief, try 2000mg daily and if appropriate, after a further six weeks, try 1000mg daily. Maintain which ever is the lowest dosage at which satisfactory pain relief is achieved.

Breast check video - we auditioned quite a few and this one was the "breast" (excuse the pun!)