Information Please

[Guest Joanna Phipps]

Currently (and for the last 26 months/24 on hormones) I have gone through life as an MTF Transsexual; this has included a monthly emotional cycle that has been fairly regular. Recently the mood swings have got much worse and over the last 6 months i have been starting to cramp. This time through it has been hell, the pain localizes about halfway between the belly button and the top of the pubic hair and originates in an area that is bout the size of my fist.

Come Monday I will be contacting my Dr. for an appointment, but he knows so little about what is going on with me that I am nearly scared to bring this to him. My concern is that, never having been checked for intersex conditions, the introduction of estrogen in to my system has caused the growth of what might have been simply a vestigial set of female organs.

The timing would be nearly right were I a natal girl just entering puberty. I don't have any idea and am on a fishing expedition for information, links and resources that might help me figure things out. I know that I am likely to have to undergo a whole battery of tests and things but such is the way of the world

[Guest EvenClose]

Welcome to the "this ain't so fun train". I made a topic about this very subject a while back. Happens to me too. I seen my doctor and she thought it could be spriro. just like you I explained to her what exactly what was going on, then she didn't think it was the spiro anymore.

She is having me keep track of the times when it happens and the duration and all that jazz.(symptoms) She told me we could do a lot of expensive tests if I wanted. I think this is kind of a rare thing that happens. Not necessarily never unheard of just kinda rare.

Good luck with your quest here. On the other hand, welcome to having Pms. Fun ain't it?

Keep me posted on what they find out, I'll do the same. Once I get insurance back though I think they are gonna do an ultrasound on me to check for the very thing you are talking about. Its kinda scary, I know! I don't know of anything to say thats comforting cause, well, Im in this exact boat.

Miranda

[Guest Joanna Phipps]

First off my hormone regimen seems to be fairly standard (Estrace BID, Progesterone BID, Spiro BID). I am curious about possible intersex conditions simply because of the timings. The onset of the pain is about right for a natal girl entering puberty (definitely not the case) the pain occurs regularly beginning on the 15th or 16th of the month and then continues for a couple of days and has started doubling me over.. The location of the pain is also correct for a natal woman and dang is it tender during that time. The rest of the symptoms I have had for two years and know them well so they don't worry me. Only my Dr. can confirm or deny it but i am curious.

[Guest Joanna Phipps]

Wrote this for my Doc

History Of My Cycle And The Onset Of Pain

Joanna Marie Phipps

Aug 14, 2011

July of 2009.

Begin transition; I was forced by my team to live full-time as a woman for two months before they would allow me to begin Hormone Therapy. This was a bit unusual but I got down to business and did what I had to do.

Aug 12, 2009|

I had my Dr.'s appointment and was presented with the release that I needed to sign in order get the hormones. This was done and the hormones were prescribed, initially Estrace BID, and Spironolactone BID, this was left as it was for about 6 months. I noticed that starting around November 2009 or December 2009 I got extremely irritable from about the 21^st of the month to the 28^th of the month. I asked about this on a transsexual support board that I am a member and moderator on and found that many of the trans-women had the same thing.

February 2009

I went for my regular monitoring appointment and blood work, it was at this time that my Dr. decided to double my Estrace, add progesterone and maintain the spironolactone . This did nothing to ease or exacerbate the cycle which stayed somewhat stable. I did notice, working with mainly women on my job, that it was starting to shift to match the ones I worked most closely with. There was no need to tinker with the dosages since things seemed to be going along well. I had settled into my medication routine and was finally becoming comfortable in my own skin.

June 2010

Preparing to leave New Mexico to return home to Canada. My ex-partner had some medical issues that prevented her form assisting with the loading of the Uhaul truck, I noticed that my stamina was severely lacking once we got up here (I had no Dr. at the time) I unilaterally decided to cut my evening dose of spironolactone in half. This helped and leaves me on the regimen I am on now (Estrace Medroxy , spironolactone ). My cycle is extremely susceptible to the women I happen to be around, I have been knocked off mine simply by hanging out with women who happen to be on their own period.

February 2011

I began noticing some discomfort in the lower abdomen. This would start a couple of days prior to my cycle beginning and would last until I was a couple of days into it. Initially I thought nothing of this and neglected to mention it at a Dr.'s appointment I had after this.

August 2011

By now I cannot ignore the pain, its timing or location. Yesterday (8/13/11) I was cramping hard and doubling over to the point that I did not wish to do anything. The pain localizes in fist sized area that begins about halfway between the belly button and the top of the pubic hair. I have also noticed that I am starting to bloat during my cycle and that there is a level of ankle swelling that will not go away. When I am cramping I have also noticed an increase in the frequency of bathroom use and the passing of both stool and urine. The urine is normal in color and the stool, though soft, is not loose. There is also a massive increase in my appetite around this time. One other thing I noticed this time is that my body temperature seems to be shifting slightly, I seem to swing from cool to warm never really getting cold nor do I ever get hot.

Concerns:

The timing of the onset of the initial pain is interesting considering it began 18 months after the time I began hormones, for a young natal girl this would be nearly right for menarche but I am neither young or a natal female. The timing of the cramping, around my cycle is also interesting since it goes for only a couple days before my cycle and maybe a couple days into it. For a natal woman this would be right for menstrual cramps but I am Male to Female Transsexual NOT a natal woman. These timings may be coincidental or they mean might be indicators of something.

I have never been checked for any form of intersex condition because there was no need, I seemed to function quite well as a male (having sired 6 kids, three each with two previous partners). With the pain and other things I get at the time of my cycle I am wondering if the estrogen might not have kick started the maturation of, what had been and might have remained, a vestigial set of female organs. Not only that but my estrogen and progesterone levels have NEVER been checked.

Requests

1. Testing of the levels of Estrogen and Progesterone
   
2. examination and diagnosis of the reasons for the location and localization of the pain
   
3. Possible karotype testing to rule out any form of genetic involvement(only if any testing for 2 comes back negative.)
   

Edited August 14, 2011 by Joanna Phipps
Dosages removed

[Guest Donna Jean]

the pain occurs regularly beginning on the 15th or 16th of the month and then continues for a couple of days

Honey......all that I can add is that a natal woman's cycle is not on the same day every month...it's only 28 days...so in 30 and 31 day months there are days left over....

I'm glad that you are going to see the doctor about all of this, though...

Good luck & Huggs

Dee Jay

[Guest Joanna Phipps]

I know Paula, but mine seems right around that time + or - a two to three days either way ... oh well lets see what happens

[Guest Julie T]

Honey, just as long as you are seeing a doctor it will work itself out, I think? Please update us.

Julie

[Guest Donna Jean]

I know Paula, ......

(psssstttttt....I'm Dee Jay)

[Guest Joanna Phipps]

brain and body going hay wire... sorry Dee Jay...

its that time of the month and don't ask me to think

[Guest Joanna Phipps]

Honey, just as long as you are seeing a doctor it will work itself out, I think? Please update us.

Julie

Hopefully it will Julie, right now it has me concerned and puzzled, and on an information hunt, but that is bout it. I will post updates as i have them.

[Guest EvenClose]

Yeah I couldn't find much information about something like this either. If anyone comes up with anything please post us a link or something cause it would be nice to be able to see something about things like this if there is any. Its nice to know Im not the only one though. I was getting seriously worried it was only me.

Miranda

[Guest Joanna Phipps]

Miranda, I suspected I wasnt the only one but it is good to know that I'm not. I sure will keep the group informed, if anyone can think of anything else that needs to be in that documentation that is going to my Dr please let me know.

oh and by the way this is driving my arthritis crazy it has been 3 days of constant pain

[Guest EvenClose]

Well actually since you posted this I kinda went on a tangent and thought maybe I was looking at it a little wrong. So I came across these couple of things. Might be worth checking out. It doesn't seem to be as exact as what you are I experience but I kinda suspect something along this line may be the problem.

http://www.ingentaconnect.com/content/oup/humupd/2005/00000011/00000004/art00351

http://en.wikipedia.org/wiki/Persistent_Mullerian_duct_syndrome

http://en.wikipedia.org/wiki/Anti-M%C3%BCllerian_hormone

Might have something to do with it. Hope maybe im on to something. Nothing else seems to fit very well.

Miranda

[Guest Joanna Phipps]

Some interesting reading and a possibility for the culprit. IFit is AMH deficiency and the rudimentary organs did exist, I wonder what impact the estrogen and progesterone in my HRT might have had on them. I wonder if it might have been enough to cause development and maturation of the organ system. The symptoms sound quite similar to what I have been experiencing, only time and many tests will tell.

I will keep the list updated.

[Guest Joanna Phipps]

Dr's appointment set for Thursday in the afternoon, this will likely be the first of several

[Guest Joanna Phipps]

I know i need to get this testing happening, but I'm scared. Scared of what they might find, then what if they find nothing... Wanting answers but not sure of what questions to ask or if my Dr has the knowledge to handle something like this. Even though he never knew me as male, I think he looks at my lower anatomy and still sees a man in a dress.

HELP

[Guest Donna Jean]

I know i need to get this testing happening, but I'm scared.

Try not to be scared, Jo.....

Scared of what they might find, then what if they find nothing...

Well, one way or another they will find something.....

Wanting answers but not sure of what questions to ask or if my Dr has the knowledge to handle something like this.

What kind of a doctor to you have? Endo? Internist? Specialist?

Even though he never knew me as male, I think he looks at my lower anatomy and still sees a man in a dress.

Why would you think that? Has he said or done something to make you feel that way? I'm curious why you would think that..

You're looking for answers.....

First off...cancer or something like that would not be cyclical....like your pains...

If you intersexed, that would be a plus because you're ahead of the curve.....

If not, maybe they can adjust your HRT to keep the pain from happening....

You have nothing to lose by seeing the doctor....

HELP

I'm sure that it's all going to work out fine, Hon....

Hang in there!

Huggs

Dee Jay

[Guest Joanna Phipps]

My Dr. is a GP

I'm not worried bout cancer, and everything else is extremely cyclical

How does intersex put me ahead of the curve?

Just a feeling i get and the fact that my last physical he never checked my breasts or anything.

Considering I have been on the same estrogen dose for 18+ months with no swelling; why over the last nearly 6 months do my ankles swell on my cycle and never fully un-swell? it is like I'm getting extra estrogen from somewhere.

There are too many timings for them all to be coincidental. All in the last 6 months after 18 months of HRT.....

I think the fear is normal looking at a radical change like this

[Guest Donna Jean]

How does intersex put me ahead of the curve?

Sorry if I upset you.....

All I meant was that if you're intersexed, you'd be further toward the female side...

Dee Jay

[Guest Joanna Phipps]

thought you meant that it might give me a better deal with the surgeons, and I wasn't upset merely curious

[Guest EvenClose]

The whole thing is scary that is for sure. Once I get insurance back Ill be doing all the testing too. Like you Im scared of what may or may not come. Its too different not to be anything though. There has to be something. I have only seen 1 other thread online about something this close to what we experience. So that tells me its not as common as far as trans goes. Its gotta be something unlooked at. I just hope they can figure it out.

MIranda

[Guest Joanna Phipps]

You and me both, and the timings of all of the things are too close to a natal female to be ignored... but we shall see

[Guest EvenClose]

Exactly. Its the one thing noone ever said would happen. Then when it does it kinda causes panic. Even if it turns out to be that there is other organs or an intersex condition, it still don't change much. I just don't want it to cause some kind of problem down the road and not to have known about it. Then Ide feel like an idiot for not pursuing it. Would be nice if the suggested treatment was GCS though. lol Just sayin.

Miranda

[Guest Joanna Phipps]

It is scary but better to know an know how to deal with it than suffer and not know what is wrong. Im with you on wishing it would make GRS easier

[Guest Joanna Phipps]

OK, the story thus far; we still have no clue what it is but a lot of stuff was ruled out today. For instance its not a hernia, nor is it my appendix (that departed in the 70s). its not prostate related (in the words of my Dr mine has atrophied to nearly nothing). As he put it we are running out of easy stuff, and once the urine culture, and hormone levels come back we will start looking deeper. He thanked me for the document and said that it did a wonderful job of giving my history and stating the time lines. He wants to wait on diagnosing intersex until we have run out of everything else (by the sound of it that wont be long). So aside from knowing what it isn't we don't have a clue what it is.

He asked many questions about the nature of the pain, its localization and where it radiates; I think to see if my story changed (it didn't).