Author Topic: So I saw the 'specialist' at duke... reproductive endocrinologist.  (Read 732 times)

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Offline Doreen

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Yay finally did.  What did he do?  He didn't look at the ultrasounds.. didn't look at the MRI's.. How do I know?  Because I had learned long ago to bring a physical copy, have the doctor pull it up, and look at the doctors behaviors when they squint with a quizzical look at the imaging.  FYI THIS IS HOW I KNOW YOU DIDN'T BOTHER LOOKING AT IT.

He was supposed to be my .. well if not last hope, close to it.  At least he did verify no cancerous gonads internally.. that's a good thing.  However, I match every symptom of a menopausal female.. and they did visualize 'something' that looked like an ovary.  Did he bother ruling that out? nope.

What he did was give me 3 potential diagnosis... and here I quote from the doc...

"Assessment/plan 1. Persistent, gradually worsening midline lower abdominal pain: Her previous MRI focused on the pelvis. I recommended she have a CT scan of the abdomen with particular attention to the abdominal wall. Presently there is no clear etiology for her discomfort. 2. Gonadal dysgenesis: I have discussed the possible original diagnoses including partial AIS, 5 alpha reductase deficiency and 17 alpha hydroxylase deficiency. We have discussed that at this point in time there is no relevance to establishing a diagnosis as it will have no impact on her health. Previous laparoscopy and blood testing shows no evidence of retained gonadal tissue which would pose a risk of malignancy.

No relevance to establishing a diagnosis..no impact on health.  Horrible daily cramping is no impact...  osteopenia bordering on porosis, no impact.. Multiple diagnostic scans with differing diagnosis, no impact?

But one example of my frustration.. continued... with our medical 'care' for those of us that don't fit any standard template.  All he did was read the assessments of previous doctors, in particular the incredibly vague and poorly assessed pelvic cystoscopy.  Ignored everything else.

 >:( >:( >:( >:(

Offline josie76

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #1 on: June 10, 2018, 09:59:18 am »
I am soo pissed for you right now Doreen.  >:(

So basically he read what other doctors wrote and decided that there is no "evidence", so therefore no reason to look for a cause of your daily pain! This sucks!!!!!

Sounds like he doesn't know how to look at imaging and just expects a radiologist report to tell him what's wrong with you. F that. Daily pain is not a health issue? This sounds like the way I have heard of many doctors treating female patients.
 >:(
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Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #2 on: June 10, 2018, 01:29:43 pm »
I am soo pissed for you right now Doreen.  >:(

So basically he read what other doctors wrote and decided that there is no "evidence", so therefore no reason to look for a cause of your daily pain! This sucks!!!!!

Sounds like he doesn't know how to look at imaging and just expects a radiologist report to tell him what's wrong with you. F that. Daily pain is not a health issue? This sounds like the way I have heard of many doctors treating female patients.
 >:(

I'm not sure what he's thinking but I spent quite a bit of time in verbal correspondence with him.  He knows things don't add up especially with all the diagnostics. I just don't understand it.. its not like I'm a demanding patient or unpleasant... I'm just complicated. 

We'll see what the new CT pulls up.. I'm not stopping until I get answers though, not more questions.

I think his only concern was making sure I had no streak gonads internally. .. he seemed extremely preoccupied with that.  Surely if I had gonadoblastoma I'd be dead by now.  At least thats the one thing he helped rule out.  Not much else.  His conclusion was more based on the 'well you're 40 now, and you look female...whats your problem'..  I was pretty clear on what my issues were though sadly.

Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #3 on: June 14, 2018, 03:32:22 am »
I've been corresponding via their patient portal with this doctor.  I asked him if he'd ever heard of a condition (barring a rather extensive surgery to remove them) where someone is born without any internal reproductive organs.  (Basically recap, that's what my latest pelvic laparoscopy claimed..)  No prostate, no seminal vesicles, no ejaculatory duct, no cowpers glands (male side).  No uterus, ovaries, Fallopian tubes, etc.. (female side).  Some of this should have been observed during a 'routine' pelvic laparoscopy... in a normal mortal.

Met with silence... pin drop... instead he answered another completely unrelated question. And yet he continues to adhere to the previous doctors laparoscopy that stated that..

Should I press this issue? Ask him AGAIN?  Or take his silence as... duh I don't know, nope never heard of it.
Too much in my life continues to forever have no answers.

Offline josie76

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #4 on: June 15, 2018, 08:39:36 am »
Seems like you should move on again, I know sucks.

Maybe checking with university medical schools will find a doctor who actually wants to help. There's a chance anyway that some university prof might be curious enough to "want" to find the answers for you. Doesn't seem regular docs want to do anything other than the easy paycheck work.


Were you ever able to use that 3D imaging software with your CT scans? I know if you play with the filters you can see the soft tissues. MAYBE somewhere in those images you can get someone to actually look instead of just regurgitate the last "experts" opinion.
04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!


Offline ErinWDK

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #5 on: June 15, 2018, 09:03:30 am »
At some point you need to find a doctor that cares.  I would hope Duke would be one of the places that did.  Your experience says that is not so.  My late wife got the run around with the so called doctors here.  One, after running the one test he sort of understood, had the gall to tell her she needed to "learn to live with the pain."  [My, the fantasies of dealing with him...]  Yes, the pain he wanted her to learn to live with was what killed her. 

My limited experience has drawn me to teaching hospitals affiliated with a medical school.  The insurance I had at the time allowed us to get a more thoughtful, thorough diagnosis; still, in her case, it didn't help.  I do not know what your limitations are in this brave new world of medical insurance; but, I would suggest trying to find someone who cares.

Despite the low quality of some so called medical experts there actually are still some who do care.  The problem is finding them...

HTH

I hope you find a caring doctor -- keep trying!

Offline mm

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #6 on: June 15, 2018, 09:51:38 am »
I agree with josie76 in trying to find a dr at a med school/univ that is interested in studying your images to give you more information on what organs you have and what is causing your pain.

Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #7 on: June 15, 2018, 11:18:30 am »
At some point you need to find a doctor that cares.  I would hope Duke would be one of the places that did.  Your experience says that is not so.  My late wife got the run around with the so called doctors here.  One, after running the one test he sort of understood, had the gall to tell her she needed to "learn to live with the pain."  [My, the fantasies of dealing with him...]  Yes, the pain he wanted her to learn to live with was what killed her. 

My limited experience has drawn me to teaching hospitals affiliated with a medical school.  The insurance I had at the time allowed us to get a more thoughtful, thorough diagnosis; still, in her case, it didn't help.  I do not know what your limitations are in this brave new world of medical insurance; but, I would suggest trying to find someone who cares.

Despite the low quality of some so called medical experts there actually are still some who do care.  The problem is finding them...

HTH

I hope you find a caring doctor -- keep trying!

We do have a local medical school with a teaching hospital. Maybe I'll volunteer to be a guinea pig or something. The paid medical provider route isn't working out well.

Thanks for your input folks.. I haven't given up and I will keep looking.  Its just frustrating... very.

Offline Dena

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #8 on: June 15, 2018, 05:40:55 pm »
In the engineering field we have something called the life of a product and it works out something like this.
1. The physics person who dreams up the theory.
2. The engineer who uses the theory to design a product.
3. The factor worker who produces the product.
4. The local worker who maintains the product.
5. The user who doesn't have a clue about what goes into the product but uses it every day.

Somehow, I don't think your getting any farther up the list than person #3 and with your condition, I think you need a #2 or #1 who is able to do some original thinking about your problem. Unfortunately I don't have a clue where you will find such a person as they would most likely be involved in research and not taking many if any patients.
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Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #9 on: June 15, 2018, 10:38:47 pm »
In the engineering field we have something called the life of a product and it works out something like this.
1. The physics person who dreams up the theory.
2. The engineer who uses the theory to design a product.
3. The factor worker who produces the product.
4. The local worker who maintains the product.
5. The user who doesn't have a clue about what goes into the product but uses it every day.

Somehow, I don't think your getting any farther up the list than person #3 and with your condition, I think you need a #2 or #1 who is able to do some original thinking about your problem. Unfortunately I don't have a clue where you will find such a person as they would most likely be involved in research and not taking many if any patients.

I was really honestly hoping this endo I saw would be that.  He did offer me 3 potential diagnosis, but his caveat was that an actual diagnosis didn't matter as it had no impact on my long term health.  Which is an outright lie, I live in pain every day because of this, and some very radically different things have been said with no definitive cause. 

I do have a CT scan next month.  But then if the ultrasound, MRI, another CT, and a pelvic laparoscopy each said something different.. I'm betting my luck will be this new scan will say something different too. Welcome to my nightmare.  AND THEY ALL KNOW they each say something different... and just ignore it. I can't imagine the level of incompetence and frank... apathy that must rule their daily medical job.  Its so frankly disgusting at this point. At least the geneticist looked at it all, and was quite amazed at their.. combined level of incompetence.  In his wright up assessment at least he acknowledged the plethora of disparate findings.

I'm not normally this bad about things, but when you have daily pain in a very specific area with very specific symptoms, you want answers.  *sigh*

Offline Dena

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #10 on: June 15, 2018, 10:58:18 pm »
Even in programming I find far to many who are able to quote the text books and write code based off what they learned from the books. Those who can do original thinking and come up with a new, original solutions are few. Worst yet, often management doesn't recognize when they have such a person and their job could become at risk for original thinking.

Society appreciates genius however it has a difficult time recognizing it when it's in their face. Thats probably the primary reason your having difficulty connecting with the person you really need.

On another topic, have you heard back on you genetic tests yet?
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Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #11 on: June 15, 2018, 11:13:58 pm »
Even in programming I find far to many who are able to quote the text books and write code based off what they learned from the books. Those who can do original thinking and come up with a new, original solutions are few. Worst yet, often management doesn't recognize when they have such a person and their job could become at risk for original thinking.

Society appreciates genius however it has a difficult time recognizing it when it's in their face. Thats probably the primary reason your having difficulty connecting with the person you really need.

On another topic, have you heard back on you genetic tests yet?

I did... everything came back 'normal' XY.  No SRY mutations, no duplications, deletions, or mosaicisms or anything.   I was warned that happens in 60%+ of cases sadly... it doesn't mean it isn't there they just don't know or haven't discovered it yet.

I have another appointment Monday with him.  He was convinced they'd find something.. we'll see what he says now.

Offline josie76

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #12 on: June 16, 2018, 09:35:09 am »
Just my thoughts,
I remember seeing 'something' in that CT scan slice image you posted. If that is a Mullerian remnant as in a partially formed uterus, then you may very well have endometriosis.  :-\ The doctor should be looking for the cause of your pain, genetic reasons aside.

04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!


Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #13 on: June 16, 2018, 01:40:55 pm »
Just my thoughts,
I remember seeing 'something' in that CT scan slice image you posted. If that is a Mullerian remnant as in a partially formed uterus, then you may very well have endometriosis.  :-\ The doctor should be looking for the cause of your pain, genetic reasons aside.

Ya that was one of my diagnosis, first they said mullerian duct intact, then they said mullerian remnant.  The ultrasound showed a fully formed uterus, the MRI showed... something that was uterine like but undeveloped.  I do know it was hollow, but lacked the defined musculature normally seen.   They measured the endometrial lining on the ultrasound & said it was 5mm (normal thickness) if I recall, and even found a tiny 2mm cyst inside (keep in mind I have cysts in other body locations, so that doesn't surprise me).  How can that be so specific and .. nevermind.  I show it and they just dismiss it as 'remnant of your old surgery'.   I've never ever EVER heard of something like that being a 'remnant' of genital reconstructive surgery.

I'm hunting down a new Ob/gyn and I'm going to continue until I get one that's willing to not just gloss over things, take my insurance money, and pat my butt on the way out the door.   

Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #14 on: June 19, 2018, 11:06:57 am »
Deleted the previous message. Had TMI.

Basically my last appointment the geneticist said i had a variant of Swyers Syndrome, and ya the uterus exists.  He really didn't give me a whole lot of options on the cramping though, so the hunt goes on.  I need to find a surgeon willing to attach the vaginal canal to the uterus.  At least I have ONE definitive diagnosis.  My chromosomes though... look perfectly normal XY lol.  So to those thinking genes will tell the answers, 60%+ of the time it won't.  Just a FYI. He still think I have streak gonads squirreled away somewhere inside... he's probably right.

The FNP that was with him told me I probably needed 'old school' abdominal exploratory surgery.  I kinda want to avoid that.

On that note, I wonder if anyone knows of some doctor out there willing or able to do vaginal attachment? I tried a certain female doctor we all know and they told me noone anywhere exists that does that.  Which is false, they do exist.   They do it for MRKH girls.


Offline mm

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #15 on: June 19, 2018, 12:52:16 pm »
Sounds like you are making progress.  Yes, drs do not like to do 'old school' abdominal exploratory surgery, thinking it produces too much scaring and all the imaging procedures can do a better job and not leave any scar tissue behind.  There are surgeons who can attach the uterus to the vagina, as you said for MRKH girls and other situations too.  One question, do you have a cervix opening and is it close enough to the top of your vagina to make a connection.  Probably the first step to get a clear image of your uterus.  Good luck and glad you have founds drs that are interested in finding out what you have inside.

Offline Doreen

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #16 on: June 19, 2018, 01:38:47 pm »
Sounds like you are making progress.  Yes, drs do not like to do 'old school' abdominal exploratory surgery, thinking it produces too much scaring and all the imaging procedures can do a better job and not leave any scar tissue behind.  There are surgeons who can attach the uterus to the vagina, as you said for MRKH girls and other situations too.  One question, do you have a cervix opening and is it close enough to the top of your vagina to make a connection.  Probably the first step to get a clear image of your uterus.  Good luck and glad you have founds drs that are interested in finding out what you have inside.

They saw a cervix (allegedly) on the ultrasound.  Then again they also allegedly saw ovaries lol.  They probably saw the streak gonads to be honest.  The uterus itself was fairly obvious.  Ya I'm hunting docs .. ANY suggestions...  at all.. if anyone knows of any would be welcome. I'm willing to travel to anywhere on the Earth at this point.

Offline mm

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Re: So I saw the 'specialist' at duke... reproductive endocrinologist.
« Reply #17 on: June 19, 2018, 01:44:11 pm »
Doreen, I am not a dr, from reading order information, I would say you probably have streak ovaries-gonads

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