My intersexed life, by me. The continued perilous saga.

[Doreen]

Hi josie76, exactly you nailed it... one of the points I was trying to make earlier, I learned, these docs  when sending you to get the x-rays, mri's ct's  etc rely on someone reading them and writing results, even with requests unless they are familiar with a certain area its still standard ambiguous answers. I now push for specific answers and ask ahead of time for verification of understanding with whoever is doing the imaging/testing whatever.
Hi Doreen, i am wondering, I was always thinking the same thing to the point my assumption is insurance/ funding, I actually went to mayo clinic by-passed all my docs for the same reason, went to another doc specifically because I knew he could get me into mayo, but they were in agreement with university conclusions and way less hands on.  When everything was all said and done I have transitioned to the long drive often weekly to the university, the only docs who seemed "curious" to want "explore" or to be interested in actually looking for oddities like  investigators is the university... Them hungry interns and fellows, competing with those Directors or Professors..lol

I really should give that a try at our local medical university.. though I'm leery of having my name splashed among medical colleagues.  I still want answers, and am willing to go to great lengths to find them, however.

[Zoe_Kay]

Hi Doreen,
I'm so sorry this has been so hard and frustrating for you!

I have PMDS too and it does respond well to progesterone therapy.  The uterus remains undeveloped without a big flood of estrogens so your HRT may have triggered its growth - and not it has no room left to grow within!

Do you ever have blood in your urine?  If so, then you have at least one working ovary in there and that is your period.  I've had them for years.  And yes, every doctor will want to make their name by writing about you in a medical journal (sign).  I always say no, just like I always say no to having my internal lady parts removed. Oh they'll try to scare you with words like cancer but they can't show you one study that proves having a uterus, fallopian tubes, an ovary or two, and a cervix will end up being cancerous!

From my experience, an MRI and a good radiologist reading it is what will give you the most accurate reading on your body and what makes it special and amazing!

I hope this helps!

XX
Zoe

[Doreen]

Hi Doreen,
I'm so sorry this has been so hard and frustrating for you!

I have PMDS too and it does respond well to progesterone therapy.  The uterus remains undeveloped without a big flood of estrogens so your HRT may have triggered its growth - and not it has no room left to grow within!

Do you ever have blood in your urine?  If so, then you have at least one working ovary in there and that is your period.  I've had them for years.  And yes, every doctor will want to make their name by writing about you in a medical journal (sign).  I always say no, just like I always say no to having my internal lady parts removed. Oh they'll try to scare you with words like cancer but they can't show you one study that proves having a uterus, fallopian tubes, an ovary or two, and a cervix will end up being cancerous!

From my experience, an MRI and a good radiologist reading it is what will give you the most accurate reading on your body and what makes it special and amazing!

I hope this helps!

XX
Zoe

Never had my urine tested for blood, perhaps I should.  I'm seeing a reproductive endocrinologist Monday who has been informed of my history and ambiguous testings.  I refuse to have it removed.  They ruled out cancer, multiple times.. so why would I have it removed? Because it hurts?  You're absolutely right, I've already had several physicians suggest that.  I want it repaired, not removed. 

Hopefully I'll know more after Monday, fingers crossed.. I am realistic though.  Past experiences with doctors generally indicates what future interactions might be.  I've already seen one reproductive endocrinologist and he basically ignored everything and did the bare minimum to help.  In the end told me my diagnosis didn't matter.   To sum it up he was a failure of a doctor frankly.  I'm hoping this next one won't be.

I agree with the onset of maturity with HRT.. progesterone quiets it but that's because I understand the effects increased progesterone levels have on a uterus.  I find it sad that when I bring this up though, physicians shrug it off... but won't take me off the progesterone.  They know but refuse to admit it.  Oh well.

[Doreen]

Finally got one of the original ob/gyn's (one that works extensively with IS folk & mrkh & trans) I saw to agree to do exploratory surgery..hopefully.  She ordered a couple months of 'pelvic floor therapy'.  It helped some vaginismus but other than that pretty ineffective overall in pain management of my chronic abdominal pain.

No date set yet, should know more by Monday.  Hopefully she'll respect my wishes for biopsy without removal.  At least they all agree I have something in me and noone really knows what it is.  Alot of guesses though, which is irritating.. when they don't actually want to identify.