What to ask the doctor...

A Menu of Questions for Women with AIS & Similar Conditions

It is often intimidating visiting the doctor’s office and we often think of questions we should have asked but didn’t. Preparing ahead of time can help. Here is a suggested list of questions to ask a GP, gynecologist or endocrinologist. Not all these questions will apply to you and your current situation. Use this list as tool in coming up with your own list of questions for the doctor. Be prepared so that you can make the most of your visit to the doctor’s office.

Suggestions: Call ahead and explain to the nurse/receptionist that you have a long list of questions and need more time than usual. Explain you have you have a rare genetic condition and would appreciate NOT being asked questions regarding your menstrual cycle at the front desk. If you find gynecological exams particularly upsetting, speak up ahead of time and ask for a ‘get acquainted’ appointment first. Discuss your fears/concerns about having a gynecological exam. Ask what provisions can be made to help you feel more comfortable (your doctor might suggest a mild sedative if you are particularly anxious). And, if you think you would be more comfortable if a pediatric (rather than adult-sized) speculum is used during the gynecological exam, specify that ahead of time. Make it clear that you are not willing to be subjected to ‘show and tell’ and will not submit to examinations by students, interns, colleagues, etc.

Have you ever treated a patient with Androgen Insensitivity Syndrome or related condition?

• Please confirm my diagnosis which I currently believe to be (i.e., Complete AIS, Partial AIS, Swyer’s, Turner’s, 5-alpha Reductase Deficiency, Mixed Gonadal Dysgenesis, etc..
• Please confirm my karyotype is (i.e., 46,XY).
• My mother/aunt/sister wants to know if she is a carrier or if my AIS results from a spontaneous mutation of the DNA. Can we arrange a genetic test?
• The risk of testicular cancer in undescended testes is real and increases significantly in adulthood. Can you confirm that (one or) both of my testes (gonads) were removed at ___ age(s). OR … Do my testes need to be surgically removed now or can I safely wait? How long can I wait? Can we use some diagnostic test to monitor/check for changes in this tissue?
• In anticipation of starting hormone replacement therapy (HRT) after surgery, please requisition (or discuss) blood analysis to establish my current level (base line) of estrogen, testosterone and other appropriate hormones/markers.
• What is the optimum level of these hormones in the blood of a woman of my age/height/weight, etc?
• Please review the HRT options available.
• Please discuss the potential benefits and contra-indications of supplemental testosterone for improved energy level, mood and libido. I understand that (depending on diagnosis) my cells/tissues are immune to the effects of androgens. However, anecdotal evidence suggests that patients experience a drop in energy and libido post-surgery and some research suggests that the brain may respond favorably to testosterone.
• With regard to testosterone and other HRT, please discuss the best method of delivery (i.e., Estratest [generic form = Syntest] half or full strength tablets, micronized compound, trans-dermal patch, Androgel, new Proctor & Gamble patch, etc.)
• As Premarin (conjugated estrogens derived from pregnant horses) is falling out of favor, is synthetic estrogen equivalent? What is Estradiol? What is Estrace? What is Estratest? Are over-the-counter plant-based estrogen supplements effective?
• I am concerned I might need to use a dilator to increase my vaginal length. Please discuss other options and their pros and cons. I have (or have not) had successful experiences with sexual intimacy/sexual intercourse. [I have not been able to get comfortable enough with my AIS condition and body image to allow myself to be intimate with anyone. Please help me find a therapist or counselor.] See also #19
• I have heard that estrogen cream can improve the elasticity, response and general health of vaginal tissues. I've also heard that products such as Vagifem Estradiol tablets can be beneficial. Do my vaginal tissues appear to be sufficiently ‘estragenised’?
• Am I at greater or less risk for breast cancer than the average XX woman? Does taking HRT increase this risk? How often should I have a mammogram?
• I don’t have a cervix but wonder if I should have a Pap smear or vaginal scrapping done anyway.
• What about the risk of heart disease? Is my level of risk the same as the average woman?
• Many women with AIS and similar conditions have below normal bone density. Please requisition a baseline bone density scan. What is osteopenia and osteoporosis? Aside from regular weight-bearing exercise, a calcium-rich diet, avoidance of caffeine, what can I do to maintain or improve my bone density? What are the benefits and drawbacks of drugs like Fosamax?
• Will you share the literature I brought about AIS with your staff and colleagues? Please let your other patients with AIS or related conditions know about our support group.
• I am having a difficult time coming to terms with my diagnosis and would like you to recommend a knowledgeable and sympathetic therapist of counselor to help guide me through this process.
• Have you told me everything you know (not 'everything I need to know') about my condition?
• My rare genetic condition, wherein I have 46,XY chromosomes, can sometimes cause havoc with the computerized billing systems at medical insurance companies. From time to time, women like me get upsetting notes from their HMOs/PPOs saying their blood tests, mammograms, bone density scans and doctor visits will not be covered because the diagnostic code used by the doctor seemed inconsistent or incongruous. I need your assurances that you and your staff will do everything possible to avoid this.

This web site was designed by Cindy in Indiana, and was updated in Sept. 2007
This web site at Indiana University is sponsored by
 The Kinsey Institute for Research in Sex, Gender, & Reproduction.
It is being published by the AISSG-USA Support Group.
You may contact Cindy, our webmaster, at this e-mail:  ais AT indiana DOT edu