Gynecological Endoscopy as a diagnostic tool for intersexed.

[Doreen]

So a little background.  At first I was given the initial diagnosis 'ovarian failure' as an excuse by my practitioners to get insurance to help pay for my HRT.  They knew my background (mostly), post op questionable but now  female. (Strange puberty which I won't go into more details, needless to say somewhat ambiguous genitals & other growth issues).

Anyways, to make the story short I saw (first time) an endocrinologist who ordered a bunch of hormone tests & a ultrasound... the ultrasound saw a uterus, ovaries that were a bit small & ambiguous, and a very small cyst in the uterus.   They recommended a MRI with/without contrast.   So I got a MRI. Now to ME the mri looks like I have a uterus, but the doc that read it said it was a 'soft tissue prominence in the expected region of the vagina'.  The ovaries if they're there are very small.  (I see 'something'... not really sure what).  MRI docs diagnosis was 'pseudohermaphrodite'.

Came back to the endocrinologist who read all the stuff, told me I had a uterus, ovaries, stay on HRT, and encouraged me to talk to a fertility expert because I 'wasn't getting any younger' if I planned on getting pregnant & having kids (I'm 43).   Needless to say I was a bit dumbfounded she completely ignored the MRI reading.  Said I was akin to an androgen insensitivity gal she treated once when I asked her if she ever saw anything like me before.  But still.. that diagnosis doesn't fit either completely (maybe PAIS).

Fast forward a week more, talked to my OB/GYN who thinks I might have 'ovo/testes', a condition in which both exist.  If I do still have something like that, clearly my body is ignoring any testosterone being made, as my T* count is always real low... even though it was finally within normal female limits (9 on the 8-50 scale). Estrogen off of HRT is and has always been perimenopausal levels since I first started measuring it.

SO ANYWAYS... the ob/gyn wants to do an endoscopy next friday.   Has anyone had an experience with this being used as a diagnostic tool over that of the ultrasound & mri?  He said he's going to take pics & will have a urological doctor in with him at the same time... Personally I think I'm feeling a bit more like a lab rat and a curious science experiment at this time.   

Anyone else with similar ... bizarre, strange, and contrasting diagnosis?  What else can they do to finally tell me what I am lol.   It IS important... I mean honestly if I'm able to have kids I would kinda want to know that, though I seriously doubt it at this time.  Thank you for your feedback.  My main problem is non stop cramping for the last ... month.   Yes I said month.  Actually it started before that, and has been getting progressively worse, so... something is happening down below my belly button and it sure as anything isn't hemorrhoids or bowel issues or my bladder.  Its beneath the muscle wall itself as well, I can point exactly where its hurting... inside me.

[Dena]

Estrogen or testosterone will stop a woman's normal period as it's a relatively sensitive process. If the additional hormone is removed, after sufficient time as passed, the period will resume. I am aware of a CIS woman who was raised as a boy and given testosterone for years. When testosterone was discontinued, hormone production and her period returned. To make up for lost time she was getting major periods twice a month and the doctors had to use hormones to balance her system to a monthly period. Your non stop periods could be much like this however if you are having cramping, you may have a blind uterus and that raises the question where is the discharge going? I guess the process wasn't clear in the imaging that you had and the doctors need a better look.

[Doreen]

Estrogen or testosterone will stop a woman's normal period as it's a relatively sensitive process. If the additional hormone is removed, after sufficient time as passed, the period will resume. I am aware of a CIS woman who was raised as a boy and given testosterone for years. When testosterone was discontinued, hormone production and her period returned. To make up for lost time she was getting major periods twice a month and the doctors had to use hormones to balance her system to a monthly period. Your non stop periods could be much like this however if you are having cramping, you may have a blind uterus and that raises the question where is the discharge going? I guess the process wasn't clear in the imaging that you had and the doctors need a better look.

Thanks for responding, honestly I'm surprised someone did and grateful.  I'm pretty sure what I have is a blind vaginal pouch, but I haven't gotten clear answers one way or another yet in that regards even.   I'll ask the ob/gyn monday if he was able to visualize a cervix or not.  He did say whoever did my reconstruction did a 'very good job' at it (for what its worth).  Allegedly it was seen on the ultrasound, but ... I don't know what to think or believe in all honesty.  I've read up a lot on ultrasound, and they tend to be good at diagnostics.. I'd hate to think the doc couldn't identify gross anatomical regions (like a uterus) accurately, as there is really nothing analogous to that organ in the body & location.

If it is a blind vaginal pouch (as I'm pretty sure it is at this point), i'd have to find a surgeon able to construct a path to the uterus, another type of SRS I guess.  I might even be able to get my insurance to cover that, as intersexed conditions tend to be.  (Especially since I already have multiple diagnosis ready for them).  I don't 'feel' discharge, but I certainly as hell feel the cramping, its honestly really miserable.  Its not 24/7, but just about.  Midol or Naproxen kind of helps, but a hot pad or (honestly) a corset really does the trick, if I don't mind leaving it on forever and sweating.  About 5 minutes after I take it of, its back acting up again.  I also have flexiril, and all it really does is put me to sleep.  I'm concerned about discharge too, because if it is happening or does happen, I could easily see toxic shock syndrome develop rapidly.   Fortunately I am a registered nurse, so some medical cues I'm aware of, as well as ability to read diagnostic tools and lab charts.   Doesn't mean I know whats going on though.. if its an enigma to docs, its certainly one to me and I have to bear with it.  I do know though if I have a sudden spike in temperature, feel feverish, I'm going to the ER immediately and telling them what I suspect... not gonna play around as TSS can be quite deadly... though generally its caused by (from what I hear) leaving in tampons.  Not sure about the period/blind vagina outlook honestly. I'll discuss it tomorrow with the ob/gyn consult for endoscopy.