Paisie's Story

[Received June 2004]

Hei, I have hereby the pleasure to present to you my story. I’m recently diagnosed with PAIS and live in Denmark. I’m not fully open about my condition and thus have choosen to give you a psedomymic name.

My name is Paisie (psedonym), and I was born with an intersexual condition. I was at hospitals several times as kid where I received different kind of medical examinations, treatment which I did not really know what was all about. I knew that my vagina was very very small and that I had one tecsticles and a big clitories thing. I was told I wasn’t a fully developed girl.

I was in actual fact a boy in all manner as child. I loved to climb trees, played indians, had knifes and weapons and loved to help my father. I really sometimes felt I was put into the wrong body. However my parents let me be meself and accepted that I behave like a boy most of the time. Thank you for letting me be the one I was.

My family doctors later on told me that my condition was a condition of being born with tecsticles, too big a clitoris and an unknown mix of inner male and female sex organs. That I might or might not have half a uterus and that I might never be able to get children. Also he introduced that I should have a surgery for this condition to make it possible for me to have a normal sex life. I was actually kind of happy about this as I now was a teenager and I wanted to get a boyfriend, and as sexual relationships wasn't easy for a woman without a vagina. I got my operations and I did truely get trouble with that. My new vagina wanted to shrink and I had to take special care of it. This was not a pleasure time but a time of horror.

My parents were not able to talk about the condition at all. They could talk about the physical and medical care but I was all alone with the condition itself as we never talked about sex or the problems that was enforced me due to my body. As an example I couldn’t tell them that my vagina was shrinking. I did not even know the name or diagnosis of my condition. I had to explain symptoms if I wanted to tell someone about what was the matter. After the hospital operation I was clearly instructed by my parents not to tell, to avoid being an outcast. Futher, I was too embarashed to tell my friends in school.

This was a time of mentally troubles and confusions. I had to drop active sport as I was dropping this object [dilator/stent  to keep it open after the operation] from my new vagina, which I had to walk around with. It fell out all the time when I was running around. I succesfully managed to push it back up, though it was kind of embarashing to have to do this all the time. Thus after a few week I desided that I did not want to do this anymore and threw my "vagina thing" away and desided not to follow the advices from any doctors anymore. Since I also desided that I did not want to eat all these pills and thus I dropped the hormons that I'm supposed to eat for the rest of my life. I just wanted to live as a normal woman, so that’s what I did. I started dating at 18 years old and though it was not allways succesfull, then I did see men and I had sexual intercourse with men. I got merried and also got devorced. My husbond couldn't live with no children and the fact that our sex life was terrible and thus it failed after some time. (I also was not faithful to my husbond.)

I desided after the devorce to have boyfriends again and started to recreate my vagina on my own free desition with objects that I used with the purpose to making it bigger. Shortly after I saw that it did help. If I wanted sex and relationships then I could make it easier by preparing my body, so it would be more successful and not deemed to failure. I meet new boyfriends and experienced for the first times in my life the feeling of orgasm during sex. I did have a promisciuos life and too many boyfriends. All of which I cheated into having sex with me without telling them about my condition. Should I have told them? I don’t know. I think this is things that does need to be told in lasting relationships, but not things that needs to hinder a creation of an relationship. It can be told when there is a good communication. I have managed to get boyfriends this way and mostly they do understand if the love is established. Some of my boyfriends couldn’t accept it so I have allways looked at the behavior of a man before getting involved. It needs to be a man that loves me for the person I am and not just one who admires my body. Today I have a longterm relationship for more than 10 years and I'm in general doing well in life.

Recently I was very unexpectedly called to Rigshospital in Denmark for an after examination and for taking part in an scientific research about intersexual persons. This was actually the 1st time for years that I had talked about this condition with any doctor. (A total of 2 periods of doctor visits regarding intersex in 20 years.) It was a complite chock to be reminded about this nicely forgotten past as I was living a normal life without thinking much about it beyond [the fact that] it's my well hidden secret. However after 1 week of thinking, did I nervously deside to do it [take part in research], as it was an experienced doctor that knew about my condition, and as I wanted to know a true diagnose about my condition and what it is.

I'm so pleased that I did this. For the first time in my life did anyone care to tell me the true details of my condition. I have AIS. I got a thourough interview by a great doctor. She was nice and did not one single time made me embarashed about my condition. She draw pictures for me about what AIS is. I payed attention to all the data she told, especially to the fact that she said to another doctor that "she (I) probably has PAIS". As my first action, when I came home, was to search the internet for PAIS and I got about 300000 words that did not tell anything about my condition. My next thought was that I earlier did find something about 'intersexual' on internet and this word 'intersexual' suddenly popped up in my head. I wrote the word in an [Internet] search mashine and what did I find. Lots and lots of information about AIS and PAIS.

I now see that the reason I was acting like a boy, as child was not becourse I was wierd but becourse I genetically was located in a male body and mentally I for sure also was more male than female as child. I guess somebody accidently forgot to tell me this, as I allway have thought I was a woman with maskuline sexual organs, not the opposite. I was not told this clearly in a launguage a teenager could understand. If I were told this, instead of being told that I'm a girl who behave as a boy, I think it would have been easier to understand. Would I had choised diferently then when I were to get my operations? I actually don’t know. But it’s a fact I started to be interested in men like a normal woman when I got into my teenager years and my body started create breasts. What if I were to deside today? I'm sure I don't want to be either a man or a woman. I actually like my identity of being mostly female with a male touch. Today I have a XY body with female sex organs and female apearence. I like my body despite the ugly scars the doctors have given it. It has been a good healthy and strong friend for me and actually I have managed to get quite a normal life, despite no kids.

I have now a fully understanding of my body condition, thanks to the doctor and also becourse I’ve studied every single page I could find about AIS from support groups. I don’t know what the future brings me, but this does give me hope. Now I know why I fell like a man at times and a woman at other times. I'm basically a two in one mixture and why should I then be only a man or only a female when I'm not. It would be a lie to meself or an altered truth. No, I need to get the best results out of that sex and gender which I actually have. I do not want to be solely a man. Also I'm too embarashed to try a relationship with a woman though my male side is really happy to fantasise about females. My female side likes men and it's somehow easier to accomplish that in the real life with a female look-alike body. I have the qualities of a man and a woman, as well as the weaknesses of a man and a woman. I'm very spiritual and philosopic in beingness.

Four weeks ago I was crying about being intersexually. This for the first time for 8 years. That was when I received the letter from the hospital. I had to start confronting truth, and that was just not easy. I went by the hospital 4 times before the examination. My hearth was beating like never before and I was extreamly anxious and felt like I couldn’t be anywhere due to nervousness and felt extremly agitated about other people. Two week after the examination I went by the hospital again and I had no bad reation at all. This made me fully understand that it was the right desition to talk to the doctors again and not to leave them out of my life anymore and also that it was needed to get understanding. Not just blindly do as they say, but listen to what they say and use the valueable information they gives.

I would have liked to get 4 kids. I'm sure I would have been a great mother (and father). I really love kids. This is a big loss, however this is just not possible in the normal ways. A good point is that I don't need to care about menustrations troughout a whole lifetime. I'm strong like a man, have a female's sence of understanding, and I can see problems from a man's viewpoint as well as from a woman's viewpoint.

My question to meself after all this is, “Is it posible to be happy and to live a normal life with PAIS". The answer is yes. Just remember you are a unik person. You do not need to be only woman or only man. Find something about your body which you like and find then some spiritually qualities about you, which you like and you will find you are not that bad at all. Those who can not live with you don’t deserve you. Just remember to learn to live with yourself as a first action and to accept the body that was given to you along with the priceless gift of life, as if you can not accept your own body, then others also will have dificulties in accepting it. Look at your body and without caring about others opinions, find the things you can admire about it and then do the same with yourself as a person and find the qualities you like about yourself. That is the true you. You are not the tecsticles in your body or the scar on your stomack!

These were the key words that helped me to accept my condition even as a teenager, and I really do hope I can help others to also accept their given body, by this story. I also hope I will be more open about my situation and be able to tell it freely with time. Untill then I can support with this e-mail

Thank you for your great site. You have provided me with suplimentary knowledge about PAIS and my condition is no longer a mystery.

Your sincerely

Paisie (a PAIS woman of Denmark)

She enclosed a letter with her group subscription in mid July 2004:

Since I have found that I have PAIS I have had a big need to express all the emotions that has arised. I have written to your site and I'm writing down what might turn out, sometime in the future, to be a book based on some of my memories. In addition I have made lot of drawings. First I made three pictures of an AIS girl which I have send to my doctor (the one who told me about my diagnosis). I have done some for my own collection and finally I have made a series of paintings which I want to give you. They express more than words and have helped me to get rid of a lot of tears. Know that I have cried many, many tears lately, tears that have been buried in my mind. My pictures, all of them, have caused tears to fall, but liberating tears.

I want you to know that I have a PAIS sister and five days ago did I deside to contact her and take up our condition of PAIS. We have never talked about the subject at all, so it took quite something to actually get into contact with her. But she was so pleased about that I did this, and so am I. We are now writing emails to each other and share the details of our life and our both stories looks quite like the many - full of secrets and full of confusions about "what is wrong with me."

Our problems are so alike that we both see how good it would have been if we had talked together much earlier. It would have been a simple thing for our family doctor to had called my mother and father, me, and my sister down to his office and then had helped us to get into communication, but this never happened. My father was alone with his concerns. My motherswas alone with her griefes. I was alone with mine, and my sister was alone with hers. Our doctor was actually very nice and friendly but he never got the family to understand the condition and in addition he gave both my sister and me a wrong diagnosis.

My older sister also might be a carrier but I'm quite sure she don't even know that she could be an AIS carrier woman. It's also going to be my job to tell her this (without causing her trouble). She has two healthy boys and will probably not have further childrens but does she even know that she only has a 50% chance of being a carrier? That she can get it checked? I do not think so.

As you can see, this is a long letter. I have an urge to write about this new aspect of my life. Once again my tear-causing pictures are dedicated to you, as the web site gave me even more data than the doctor at the hospital did.

She emailed again in early Aug 2004:

I'm actually getting quite confused right now. I was by my doctor told that I have AIS, and as I had enlarged clitoris have I assumed that I have PAIS, also due to a doctor remark that I "probably have PAIS". However my sister, who has AIS as well and went through a similar medical check as I did, was so smart to get a copy of her medical file and in her file the diagnosis written is CAIS, Morris Syndrom. This of course doesn't make sence as it, in one family, can only be CAIS or PAIS. Thus I have written to get my own copy of my file. I need to get the truth data, as I will not accept any futher confusions or half truth abouth my condition.

I'm really getting into communication with my sister (we write e-mails as well) and this is really great. She has a hard time to accept the male side in herself. We both don't understand how we for 35 year have not spoken a single word about this subject with each other. I desided to change that, and now we talk and talk.

I have also told to several on my work that I'm androgen insensitive, and have told this in great fear of being regarded as an social outcast, getting thrown out and laughed about. This has not happened at all. All have told me that I'm still the exact same for them as I was before and their view hasn't changed a bit on me. They consider me as a person not as a body. I never expected that reaction at all, so that was a real pleasure that makes me less scared of telling the truth.

I wish I had been raised like the CAIS girls in the film "Am I a girl or a boy?" which was shown in Danish television 3 weeks ago. I really felt so great about seeing how the two CAIS girls and their parents could manage to tell about it and actually being proud about them self. This kind of openess is going to be the goal I want to achieve in regard to this subject.

We replied:

Our web site says (on the What is AIS? page):

<<It is thought not possible to have the complete and partial forms of AIS in the same family unit. In cases where this appears to happen it is probably a case of one sibling having a low grade of partial AIS (e.g. grade 3 in which there will be some masculinization of the genitalia) and the other sibling having a high grade of PAIS (e.g. grade 6 in which the genital appearance will appear female as in the complete form, which is grade 7, but with pubic/underam hair).>>

One clue would be pubic hair. If your sister has CAIS then she will have no real pubic hair. This would be an important question to ask her. If she has PAIS Grade 6 she will probably have some pubic hair.

Tell me a bit more about the TV film, so I can see if I know it. It might be a film that I know but with a different title for Danish TV.

She replied:

I actually allready talked to my sister about the pubic hair and she has allmost none. I also have only very very little, and no underarm hair at all. However I still think it must be the PAIS diagnose that is correct, as I have the enlarged clitoris and I had one teste that was outside my stomack, and as I have felt a strong male part in me, especially as a child. (I do look quite female with big curly hair and not maskuline.)

When I got the test results at the hospital they told me they found the altered gene and now could give an exact diagnosis for our family, but she only said directly that the diagnosis is "androgen insensitivity syndrom." .The "PAIS" I heard by accident when she talked to another doctor before the final diagnosis and the gene was located. I'm sure they do know if it [is] the one or the other, and I will insist on getting it in writing.

The film was a British dukomentation program about 2 girls with CAIS, one 16 years old and one 6 year old. (The 16 years old girl was named Ilizane, the 6 years old, Xenia). The program also showed a mother who desided to give her child a feminisation operation and a woman with real hermafrodites. The second part of the program was with men with Klinefelt syndrom. The program was very good, especially the part about the CAIS girls and their family did I like, due to their way of making it something natural, and not a thing to be ashamed about or an illness. I also could recognize meself in some degree in the 16 year old girl and how she looked at herself. It was great to know that it does not need to be wrong to feel this way. I really wished it had been as open in my family as it was in theirs. In my family it was hidden from others complitely, but within the family I was allowed to do exactly as I wanted. There was no restrictions at all on that I could not play with boy toys etc. So it's only the openess I missed, (which however did cause me to walk around with it complitely on my own for most of my adult life) .

We responded:

I know the TV film. All the people in the first part (the non-Klinefelters part) are members of the UK group (whom we put in touch with the film makers) and they come to our meetings. It was screened here on Channel 4 on 5 April 2004 with the title 'Secret Intersex' (see our History of the Group page) so they changed the title for Danish TV. Peter, the father of Ilizane, wrote a good article called Trust Me, I'm a Patient some years back.

In May 2005 she emailed with an update on her experience with testosterone HRT:

This is a small update about me and my treatment, which I thought might be of interest.

I know this subject [testosterone HRT] was one of the subjects you wrote would be taken up at the [Spring 2005 AISSG UK] annual meeting, however I didn’t quite feel like sharing this at that time and couldn’t manage to be there at the meeting. This may however be of interest for some of those who has a PAIS condition like me and you can use it if you want to.

First of all after my taking part in the research I was referred to a gynaecologist who should help me mainly on the matter of hormones. This being an issue I really would prefer to be without as it’s a constant reminder. Anyway we got a good talk where I openly told all my bad experiences with oestrogen. They were very interested in knowing why I dropped HRT. After a while the doctor recommended me to try out testosterone HRT instead of oestrogen as she knew this was more successful for some AIS patients. (This however mainly being tried out on CAIS patients) This I did start and I now have been on this HRT for half a year. I saw that some group members have shown interest in this subject, and I thought I would like tell about my experiences using this product.

I want to tell you first of all that I have PAIS but I’m responding only very little on testosterone [have shown little sign of any testosterone effects in the past] and had no pubes hair, probably due to my operation. Anyway the product was started. It was very embarrassing to go to get the product. However I live in a big city so I did manage to do it. The product, which I receive as a gel, caused a change immediately. I will not say that it was an “only good feeling”, however something in my mind was so pleased about getting this [what is] for my body [a] natural product. The hormones I just down deep knew that they wouldn’t turn me more male as they did not do that during my puberty. The doctor was a bit concerned about my reactions as she didn’t know exactly how I would respond to the hormones but personally I didn’t fear the reactions or becoming more male with beard at any time. I knew this would not occur and so far no beard has grown. I have small hair on 3 mm which I’ve always had.

One thing however is that the missing pubes hair has started to grow, which also then completes the definition of the PAIS condition (which we talked about earlier.) They are not that big yet, however they are there and I love to have these as that’s one of my major concerns re taking a shower at the swimming pool. In the area of libido etc this has improved quite a lot. I also feel more physical strong. As a side effect my skin is getting more dry and I have gotten a few pimples. This I don’t like too much, but still it’s better than the oestrogen which I never at any time liked to take. I still feel that not taking hormones is what makes me feel the best despite I felt a bit weak, however as my bones are low density in the spine and it’s getting close to osteoporosis I couldn’t just ignore this fact anymore.

My own conclusions as to why I wanted to try out testosterone were the fact that as I do not have ovaries I only produce half the testosterone as XX women does. On top of this is my insensitivity which however is incomplete. Thus I figured that if I got more testosterone I would get a body that might respond more like XX females and have the same amount of testosterone as XX female bodies. I receive a full male dose and it seems to be the amount that nature would have given me and this is what it takes to complete me as an XY-women. For me this proves that I was created exactly as I should be created hormone-wise. There was no need to change me or remove the testes at all. Frequent examinations to ensure no cancer would be my current choice if I was asked today.