I was born in December of 1954 and was the second child. My mom always tells me that I was the only "girl" born the whole day in that hospital and the nurses made a real big fuss over her and me. When I was delivered the doctor told my mom that I was crying a lot and it was due to a hernia down in my groin area but "not to worry" that it would "correct itself"! So that was that and my mom took me home.
I had two more brothers. So we're a family of six (3 brothers and myself) and of course my dad and mom.
I grew up on farm and couldn't have been more happy. This is why to this day I have such a love of the outdoors and animals (especially dogs). I wanted so much to have a baby sister and remember when my last brother was born I was just devastated when I heard it was a boy. I had picked out a name for her and everything. My second oldest brother and myself were and still are very close, and then my youngest brother and I have a good brother/sister relationship. But my oldest brother has never been close to any of us. (It's his loss and he's missed out on a lot but then that is another story).
But as I said I grew up on the farm. With 3 brothers I was a real tomboy and loved climbing trees and buildings. In school I could outrun boys older than me but I also loved dolls and all the "girl" things. I loved getting dressed up in frilly dresses and black patent shoes. My mom loved to dress me in red. We certainly didn't have a lot of money but my dad worked hard and my mom went above and beyond the call of duty as a mother. She was and still is the best mom in the world. Her and I have always been close and I know she'd do anything she could for us kids (and has).
I went to school in the old one room school house where grade 1 through 8 were taught. I loved school and being with all my friends. I was an average student (never good at math) and excelled in certain subjects. My hernia that I had as a baby I guess did settle down because it never bothered me again or not so that I knew. I remember in about grades 7 and 8 my girlfriends were developing breasts and I wasn't yet. I think it was the summer before entering grade 9 in the fall that I finally did get breasts and I hated them (and still do this day!)
I remember that summer my mom got a small package in the mail from Kotex and promptly hid it somewhere. Well a few days later when my dad and brothers were all out and I was playing with one of the farm dogs, she came out and gave me this package of 2 little books and just said to read them. Well read them I did and then I literally freaked out. The one was titled "On becoming a woman" and of course about ovaries and periods and all that. I remember running into the house and throwing them both at her and swearing my head off that no way that this was ever going to happen to me and that I didn't want to grow up! I knew I never wanted to have babies and I even said I never wanted to get married. I know I really upset her and to this day it bothers me. If only I knew how prophetic my words would be!
As I said my mom and I have always been the best pals in the world but she couldn't talk to me about sex and periods and all that. But growing up on a farm one gets an early sex education with the bulls and cows and all the other farm animals! But anyways that was that and not another word would be spoken about periods and such for at least another 12 years when I would be 24 or so! I guess my mom just thought I was taking care of myself somehow in regards to periods throughout the rest of my school and teen years!
I should regress a bit here and say that I was a healthy girl and right through until I graduated at the age of 17 I never went to doctor! I was never examined once. Being on the farm we didn't even have a family doctor. I went once or twice for some skin rashes and once when I ran a spike through my foot but other than that no. But I do remember once I got into my teens (I'd love to know if this happened to other AIS women) I started getting severe pains in the groin area. Terrible terrible pains that I would just double over with and cry. My second oldest and youngest brother had both had appendicitis in the last few years before this and my parents thought I had it too. The pain was in the same general area.
I had a severe attack one night and my parents were going to take me to the city the next day to the hospital but by the next morning the pain had gone away and I was fine. This went on until I was in my early 20's and then never bothered me again. (I now know it had to be the testes that I never even knew I had!) So everything in life spins on a moment! If I'd still had pains that next morning I would have gone in for an operation and then the truth would have come out. Because my parents had no idea. How could they?
But back to high school and of course girls were all talking about their "monthlys" or the dreaded "red friend" or whatever the term of the day was. I would just stay quiet or change the subject or just plain lie. By the time I graduated at 17 I was beginning to worry somewhat, but actually still glad I didn't have to go through all the mess and winging and moaning and groaning that my girlfriends did every month!
OK now I've graduated and at 17 I move into the city and get a full time job and get a nice room in a rooming house and I'm on my own to make a living! I hop on the bus every weekend and go home to the farm and come back into the city every Sunday night and cry myself to sleep because I'm so homesick and friends are now scattered all over.
Anyways, when I'm 18 I start thinking about never having periods and I guess it's really starting to bug me now so I close my eyes one day and pick a doctor (any doctor) out of the yellow pages and make an appointment to go see her. I leave work early and finally find this place (the building looks ancient).
This old lady doctor finally comes out to see me and I'm thinking to myself "OK - how are you going to bring up the subject of never having periods"? But I had gone to see her on the pretence of having really bad canker sores in my mouth and they really hurt bad. Well she starts doing a medical history on me and writing down all the answers to my questions. Then it comes to the question of "How long are my periods"? And I tell her flat out I have NEVER had any!! I remember the look of horror on her face.
"You've never had a single period, what no spotting or nothing"? and I said absolutely nothing!
Well she didn't know what to say. But then she kind of composed herself and said, "Well I've got to get you on hormones right away, this can't be delayed any longer". Well with the tone in her voice and the look on her face she scared the hell out of me and I just got out of there fast!! I never went back. That was that and I wouldn't see about it again for another 6 years when I would be 24!
I really never had a boyfriend until I was about 21 and then it was just casual dating and kissing. But I was having a great time and my life was happy happy happy. Just going to the pubs and dances and vacations and having my own car now and a nice apartment and a good job. Life was good.
But of course it bothered me that the periods had never started. I just told myself that it would never happen now and hey what the hell I didn't care... I was saving a ton of $$ on pads and tampons and being "sick" once a month like so many girls. Besides, I was just going to stay single and I still didn't want kids anyhow. I truly felt 'blessed' by not having this monthly curse and thought of myself as a very unique special girl. And I had just accepted the fact that in my mind I just never developed "downstairs" and my insides there were still like a little girls, OK so what I can live with that! I never spoke about it to a single person. None of my closest friends - absolutely NO ONE! It was my really neat dark secret.
After Christmas in 1978 I thought the time had come to finally get the answers to at least why I couldn't have periods and no hair under my arms and all that. So this time I did careful research through co- workers (not giving away my secret though) and found a good doctor (so I thought) at a respected clinic in the city and made my appointment. It had to be a female doctor and when I went in I cut right to the chase and told her I'd never had a period in my life and wanted to find out the whys and hows. At least she didn't freak out on me. She said there would have to be testing done.
She gave me a complete physical but said nothing to me and did blood tests and she said she'd get back to me in a few days. I left thinking finally, finally I'll get my answers!
She did call me back at work the next week and just said she was setting up an appointment with an endocrinologist. So that appointment was set. But then just as quickly (within a few days) I got a call from the doctor (not the endo) that they were cancelling the appointment. I remember the words exactly "There's nothing he can do for you anyways, so it would be a waste of time"!) I was shocked but the regular doctor wanted to see me back the next week. So I went back to her office BUT she never told me one dam thing about my test results or anything. I was only told I'd never be able to have children and did I want to see a psychiatrist to deal with that issue??? I said no because I had accepted that already in my mind anyways and I didn't want kids. "Well if you change your mind and get married you can always adopt".
THAT WAS IT CASE CLOSED!! She must have known but told me nothing. So again I left a doctor's office being no more wiser. And again after being shutdown and shutout it would be another 16 years (and I was 40 )until I'd even go near a doctor again to discuss anything! I really really hated doctors and their mightier than thou attitude. They could all go to hell as far I was concerned. They couldn't diagnose their way out of a wet paper bag!!
OK fast forward to about 28 years old. I had boyfriends over the years but kept them at bay. I just didn't want to be intimate with anyone. But I met this great guy (Grant) that year and we just started out being friends but it just grew deeper and deeper. Nah I couldn't be falling for this guy could I? He just me be me. I was and am very independent and I wasn't going to sacrifice that if I married him. And I told him up front that I couldn't have kids and if wanted kids go looking somewhere else and he didn't care. He just wanted me and since we both loved animals we'd get a dog or two. So after 3 years of dating we got married. And we've had our ups and downs and I've been ready to pull the pin on numerous occasions with his in and out of jobs and family "crap" on his side and $$$ troubles and other stuff but we've stuck by each other and its been 16 years now.
A side note here is he's the only guy I've been with sexually and as far as I knew we were having normal great sex so how could there be anything wrong with me!!
So at this point I still didn't have a true family doctor and once again the old hauntings come back that I need to find out. Over the years I had tried to find out things from medical books and magazines and being a librarian I'd get inter-library loans articles but nothing conclusive ever came up. My husband actually told me I should go and see his doctor (woman doctor) who other members in his family were seeing. She apparently was very nice.
So I thought what the heck its been 16 years maybe I'll try and find out AGAIN! So I made the appointment and this time for my first full physical in my life at 38 years old!! When I met Dr._______, I couldn't believe how nice she was and how easy she was to talk to. I could just tell her anything. It was like talking to your best friend. So I opened up and told her about never having periods and I HAD to find out now at this stage in my life. She assured me she'd do everything in her power to help me. So I went through the full physical, blood tests etc. I told her about my going to the clinic at 24 and just being turned away cold. She thought they could still have my records of that time and she put in a request for them.
She phoned me back a few days later and my records from that clinic were gone which she found very odd but it had been 16 years after all. Well things started moving rapidly. I was back in her office within a week and told I had to go for an ultrasound at one of the hospitals. So I went there and got that done. Then another appointment was made with a specialist (endocrinologist and gynaecologist) for more blood work and tests.
Then finally I was back to Dr.________'s office and I waited with bated breath for the results. THIS IS IT. This will be the answer after 25 years of wondering why why why? (I'm going since becoming 13 years old). Well, she had a talk with me and told me in effect that when I was being "made" I had never developed ovaries or a cervix or fallopian tubes or uterus. But I had gonads which had never developed.
"Gonads, what the hell were they?" I asked. "They are what you have when you're pre-puberty". They highly recommended surgery ASAP to remove them for fear of becoming cancerous. I was already pushing the big 4 -0! I should have the operation within the next month or so or when a bed became available. I left there thinking I had finally found out the answers I needed but being very upset.
I cried all the way home because she had really scared me about the cancer thing.
But I had to get rid of those dam gonads. The surgery was scheduled for the next month but a terrible blow came to me and my husband. I lost my "secure" wonderful job after being there for 12 years. I went into a tailspin of depression and worry. I didn't even care about an operation now. I just needed to get another job and a good one at that. So I cancelled the operation until I got back on my feet. Then 6 months later my husband lost his job where he had been for 10 years. Talk about a black cloud starting to form. Things just went from bad to worse.
Well I found two decent part-time jobs and it was about a year later and I thought I better get in and get the surgery done. So I had the operation at the end of November in 1993 (just shy of my 40th birthday).
I remember my husband driving me to the hospital that day and totally being a basket case waiting upstairs before they come and get you. I was totally convinced that they'd open me up and I would be chock full of cancer or that I'd die on the operating table! I even scratched out a will and informed him I wanted a tape of Elvis Presley singing "Amazing Grace" and "How Great Thou Art" at my funeral!! (Total Elvis fan). They gave me a sedative to calm me down and that was it I went in had my "gonads" removed! The surgeon came to me after and said it was a complete success and that he had "gotten them". There was no cancer or pre-cancer or anything. I went home from the hospital in 2 days and was back at work in a week (still very very sore though).
I went back to see the surgeon in 6 weeks at his office and he examined me and my scar and said I was healing beautifully. I asked him why this had happened to me and he told me that in all his years of being a doctor he had only come across maybe 2 other women with my same "condition". I asked him what it was and he gave me this long name that I promptly forgot as soon as I left his office. But I could look forward to a long and healthy life now. OK I thought. That's great.
I went back to Dr._________ and she really never told me anything more but that I should go on HRT pills or patches. I had the operation in November so I went on a low dosage of HRT but after a month or so I'd forget to take them and quit taking them all together. I guess after my body got over the shock and trauma of the operation (about January), 6 weeks later or so well I went into complete menopause cycle! I remember just tearing the covers and sheets off myself and throwing wide open my bedroom window. And this was with a temperature of 30 degrees below!! I would just boil inside and sweat. I thought I was going insane. My poor husband just couldn't cope with it. How the hell could I have menopause if I had never even had a period in my whole life???
Back to Dr._________ and she said my body still had estrogen and because of the operation it had thrown all my hormones off. Well I was cursing the day I even had the operation. I suffered with this menopause crap for another 4 months until everything settle down. It was pure hell at its worst. And the other thing was always being a very slim person I packed on 10 pounds within 3 months of the operation. I was 130 lbs when I went in and 3 months later I was already 140 lbs!! (I'm 5 foot 7). And I just kept putting on more weight where today it has become a real problem for me. I now weigh close to 170 lbs.!! All because of that operation and my whole system getting whacked out. I still curse that operation to this day. But I guess better to be heavier than dead with cancer. But now I read that its only 9% chance of cancer. So if I'd know that back then I would have taken my chances.
Otherwise I'm very healthy but the extra weight has caused my cholesterol to climb 2 to 3 points and it's the bad cholesterol. So I'm really trying to lose 20 to 30 pounds now
Anyways I quit my HRT treatments from age 40 to 44 and after one of my yearly checkups my doctor sent me in for a bone density test and the results came back where I could be headed for osteoporosis if I didn't get back on HRT right away. So I've been going in for a monthly shot. Its a combination of estrogen and some testosterone. I'll be tested again next year to see how I'm faring. Hopefully good!
So I had the operation 8 years ago and just in the past few months I started thinking about things again and something just wasn't totally right as far as my diagnosis went. I'd go in for my yearly checkups and Dr._______ and I would talk about things and I'd refer to the operation now and then but really nothing more was said.
This past summer I stared digging and searching on the net. But I couldn't come up with anything. I'd type in key words like "missed periods" or "women not menstruating" etc. Nothing concrete would come up. Then it was only in the last month I was searching at work one weekend and I typed in the word "gonads" and a whole slew of hits came up. Then I found words like Androgen Insensitivity Syndrome and WOW it just hit me between the eyes. Did I have this, is this what it was? NO way? XY chromosomes in a female? My head was spinning. I just couldn't get enough. I read more and more and more and website upon website. Then I came across the Australian AIS website and read all the biographies. Their stories fit me a T. The puzzle was coming together after 33 years of wondering. I downloaded a whole pile of documents and had them ready when I went to see Dr.______for my next HRT shot. I just couldn't believe it.
"What? I was actually supposed to be born a boy but my body wouldn't respond to androgens and I stayed a girl?"
When Dr.______ came into the office she seen I had this pile of papers. My heart was racing. She said "oh I see you've been doing some research?" I said yes and I showed her one with a deep bold print on top with Androgen Insensitivity Syndrome on it. I said "is this what I have"? And she took a breath and said yes! And all I said was WOW and she said "yes WOW". She had known 8 years ago before my operation after all the preliminary testing was done. She even had to research it.
She said right away to me "but Bobby-Jo you ARE 100% female". Then she showed me my records from 8 years ago and from all the specialists and the surgeon. 'Thank you for sending me Bobby Jo' one of them said. "She is quite the unique remarkable young woman and so healthy!" Like I should be in wheelchair because of this?? I indeed did have XY chromosome and am compete AIS. Shorter than normal (blind ending) vagina but longer than most with same condition, juvenile nipples, sparse pubic hair and no underarm hair, smooth skin, even juvenile looking at almost 40 years old!!! Hey maybe us AIS people have unlocked the key to youth eternal and will live to be 200!!!
So Dr.______ and I talked for a long time. (Keep in mind this was only 2 weeks ago!) She then asked if I was mad at her for not telling me 8 years ago and if I was then it was ok to tell her. And you know I'm not mad at her at all. At least she took the time to finally diagnose me and be with me through everything else the past 8 years. And I told her when I first met her I knew she was someone I could easily talk to after being shutdown by other physicians. And I thank her for that. Yes maybe she could have told me 8 years ago but I really think with slowly finding out on my own and with the help of the net (which wasn't there 10 years ago) maybe it was even better this way. I found out slowly and surely and not a major shock all at once.
She said she herself debated whether or not to tell me everything but "if the patient isn't asking questions then its not time yet". So on my prior HRT visit the month before I had started asking questions and she knew it was only going to be a matter of time especially when I told her I searching the internet now. And that's why she wasn't too surprised when I walked in with my bundle of papers. So NO I'm not mad at her at all and think how lucky I am to have such a great doctor.
WHEW! So that's my story. Boy it feels good to write it down and other people with AIS will understand. I just spoke to my mom yesterday and have told her (not everything). She is 77 and I don't want her to think I blame her in any way. And the same with my father. I'm so lucky to have both my parents and they're both in great health. Hey it happened so live with it! I have never ever thought of myself of anything but female. So I have a few "male" chromosomes in my body - so what! We're all nothing but a 100% cells and tissue and water anyways. AIS had made me the special unique individual I am today and I'm quite happy with her. I don't need a psych to talk to.
Probably then I would get screwed up for sure! Sure it bothers me. Sure I cry now and then. But I probably came through it less scarred than most by being totally ignorant and never going to doctors or checkups most of my life. I think if I'd found out when I was 13 or 15, I might have wanted to "checkout" but now NO WAY! And I don't know if other AIS women feel like this but I know I do.
Inside I still feel like a little girl that hasn't grown up. Is this part of it? I'm not religious in the least but I think this is the body the Good Lord gave to me, a special body. What? 1 in 30,000 or something like that? What are the odds eh? I have a great husband who stands by me, I'm healthy, have a nice home and my wonderful dogs and a parrot, get stressed out, I get down, I want to give up. I've been through a lot but I want to live to be 105 years old and just enjoy life. And I'm so thankful I have found Renee and Tony and the whole lot of you. I know you'll be there for me and I'll be there for you. God, I'd love to go one of the meetings in person to meet just one other real live person with AIS!
Maybe it'll happen one day soon. I truly believe we were made this way for a reason. I know I'm a very compassionate caring person with a strong (almost ESP) feelings about other peoples feelings. I get hurt very easily on the other end of it though - especially if women are mean to me. I will and have stood up to anyone who crosses me the wrong way and have caused more than a few to cower in fear. God, it must be those male chromosomes after all!!
Love you all. Be good to yourselves. Thanks for listening.
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