Wonderful advice from AISSG-US, What to Ask the Doctor- A Menu of Questions for Women with AIS & Related Conditions

According to the AISSG:
"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.

1. Have you ever treated a patient with Androgen Insensitivity Syndrome or related condition?
2. 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.).
3. Please confirm my karyotype is (i.e., 46,XY).
4. 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?
5. 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?
6. 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.
7. What is the optimum level of these hormones in the blood of a woman of my age/height/weight, etc?
8. Please review the HRT options available.
9. 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.
10. 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.)
11. 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?
12. 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
13. 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’?
14. 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?
15. I don’t have a cervix but wonder if I should have a Pap smear or vaginal scraping done anyway.
16. What about the risk of heart disease? Is my level of risk the same as the average woman?
17. 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?
18. 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.
19. 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.
20. Have you told me everything you know (not 'everything I need to know') about my condition?
21. 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 poster feels that this is a thoughtful and comprehensive list for those with AIS to consider utilizing for doctor's visits.

So what's with the orchids?

Most people would think of an orchid as a beautiful, maybe rare flower. Orchids (and other flowers- See Georgia O'Keefe's work) have been depicted in art as having a sensual allure, or even looking like a representation if genitalia in nature. Some orchids grow, bloom and thrive in the most amazing places in harsh environs, while others take great care to cultivate. Orchids come in a variety of species and colors, just like those within the spectrum of the DSD's (Disorders of Sex Development) like AIS. To me this is powerful symbolism.
According to the US-AIS Support group or AISSG:
"Orchids - symbolic of rare and beautiful women. All the more fitting an icon since many of us [with AIS,] have had surgery known as an orchidectomy, orchiectomy or gonadectomy. The medical term for testes is orchids (from the Greek "orkhis"). " Meaning that the orkhis or testis/gonads were surgically removed for a variety of reasons.

DOCTOR, DOCTOR...PLEASE!!!

It seems that every time that I go to the doctor I am confronted with not only having AIS, but having to be a teacher, spokesperson and victim all at the same time. You see, for me, even on the most routine appointments like for a sinus infection to get medicine, (which is the only reason that I typically go) or for a UTI or even if I broke a finger, the nurse will begin by asking "So are you pregnant? Are you sure? When was your last menstrual period?"

I will answer, as always, that I do not have menstrual periods and I'm positive that I'm not pregnant. This will open up a can of worms that on a good day will have the curious nurse just prod with questions until she is satisfied that I actually know what I'm talking about and that the world will not have to stop before she weighs me and takes my vitals, just because I do not have a period. On a not so good day, her curiosity turns into a medical seminar (remember folks I feel crappy enough to have gone to the doctor) in which she finds it all fascinating or she brings someone else in to hear about it, or I think that I can just barely hear her joking about it to a co-worker in the hall.

Doctor's are not necessarily any better, they either spend 10 minutes longer in their office reading up on AIS before coming in to feel my swollen glands and confirm that "it looks like Strep," or "yep, it's a sinus infection, you'll need some antibiotics." No Kidding! I think to myself as he then changes the topic to AIS and has me explain it until he's satisfied that either he or I understand it (I'm not always quite sure which.) Unfortunately, this usually becomes the topic of why I am there. I'll say, will you please note that I have AIS in my chart (thinking that there will no longer be such questioning each time I come in- silly me!). Lastly there is sometimes the side comment from either a doctor or a nurse "oh that's so interesting," or "wow, you're so brave" or even "well you're handling this well." UM, HELLO! I can't change this I was born with AIS, yeah I'm handling it, do I have a choice?

TO all medical professionals: please remember YOU ARE NOT NECESSARILY the world's leading physician hero! No offense but STOP watching "House" and get real! If I am telling you about AIS, it's pretty damn likely that I've been consulted about it and since I'm only there for a cold or a broken nose, I think it's a bit irrelevant! Remember, I've probably been made to feel like a lab rat before, YEP! I've been poked and prodded and scanned and examined ad nauseum. So please have the decency to respect me enough to NOT make it the AIS show when I come to the doctor for a routine visit. AND PLEASE DO NOT ask me if you can invite in a resident or a group of students or another doctor so you can all get a good look at me. NOT when I'm there for a cold! If I was in your office for something related to AIS then I'd be glad to teach you or help you teach others, but PLEASE let's think about this for a second and be reasonable!
THANKS!

To ALL Information Seekers:

I hope that this site will be helpful for anyone out there that is struggling with intersexuality, celebrating their intersexuality, or is interested in learning about intersexual conditions in a positive, non-judgemental way. Please post questions and either the Education Administrator or another member of the intersex community will be happy to discuss topics with you.