Frustrated, hurting, and nowhere to turn.

[Doreen]

Some of you might know my story.. most probably don't, but in the what does it matter?

I've had MRI's, Ultrasounds, Pelvic Cystoscopies, CT scans.. of the same area.. and none agree.  My Primary care doesn't know what to do... my endocrinologist doesn't either at this point apparently. (She just called to cancel my next appointment). 

They keep bouncing me up the chain of command.. my next appointment is with a geneticist (who I should've seen 40+ years ago anyways).. 6 month waiting list.  Can't see him till April.  The PROBLEM is, my 'problem' is getting worse.  Its gotten to the point where I'm cramping so bad its hard to eat, hard to sleep, my pelvis/hips/back are aching constantly now.  It feels like something is being torn up inside.   Yet the one thing they all agree on?   Two things really.  My intestinal tract & urinary system is 100% ok. (Maybe constipation sometimes).  Not diverticulitis, not irritable bowel.   None of the symptoms match up.  No internal male structures, its the 'other' stuff that has one huge questionmark above it.

Meanwhile the lower abdominal pain intensifies.   I take midol or naproxen, flexeril, and use heating pads repeatedly & daily now.. for only minor relief from the constant internal torsion.

CAN you see how this is incredibly frustrating? painful?  I'm tempted to go to emergent care or the ER but I know they'll just kick the can to someone else.  Suggestions? ideas? ANYTHING at this point is welcome advice.

I'm a registered nurse (and lpn and cna btw).  I've tried all the nursing remedies I can conceive of.  Increased fiber, decreased caffeinated beverages, I even got off HRT under the theory maybe it'd help.  Nothing...nothing is stopping it.  All the medical 'professions' are at a loss for explanation. I'm not convinced the geneticist will help either.  Its not in my damned head.

[Paige]

Hi Doreen,

What's the "other stuff" you're referring to?  Also when you say there's no internal male structures, does that mean you have female internal structures?

Hope things get better,
Paige

[Doreen]

Hi Doreen,

What's the "other stuff" you're referring to?  Also when you say there's no internal male structures, does that mean you have female internal structures?

Hope things get better,
Paige

Ultrasound stated uterus / poorly visualized ovaries.  Needed MRI for clarification
MRI stated 'fleshy protuberance in expected region of vagina' their words for the organ seen in the ultrasound, no ovaries visualized.  Suggested it might be prostatic
Pelvic Cystoscopy said NOTHING internally, no ovotestes, no streak gonads, no prostate, no fleshy protuberance.   Hell he didn't even see one of my ureters (a concern for MRKH and wolfian agenesis is one kidney gone btw)
Lastly a CT scan said... oh everything is 'normal'.  Whatever that means.
I also had a prostate exam and PSA levels drawn, both come back negative... and no prostate or seminal vesicles or ejaculatory or other male like structures internally.   Just... whatever.. I have is in question.

Swyer is the closest thing, but even thats not accurate 100%. 

Meanwhile I feel constant cramping, literally feels like a rag being twisted back & forth internally.. mid region below my belly button...ALL day.  Has me down bigtime. If it was 3 days out of a month I would be blessed. Nope, not cyclic either... at least certainly not anymore.

On the bright side noones seen cancer.. so I guess there is that.   Also a concern.

[Lady Lisandra]

In what form do you take hormones? Pills, shots, patches... Maybe it's just a endless menstruation.

[Doreen]

In what form do you take hormones? Pills, shots, patches... Maybe it's just a endless menstruation.

Estradiol Valerate Injectable IM once a week.
Progesterone (bio-identical) at night
Fosamax for bone density problems.
Calcium+vitD
Biotin

Only time I bled was for about 2 years vaginally... more related to scar tissue after the operation.
No blood in urine or stools noted, no cervix seen except on ultrasound.   If I was menstruating it sure isn't going anywhere.  Bloating? ya.  I'm just worried if thats happening I'm filling up inside or something.  Noone knows.

[Lady Lisandra]

Well you don't have to bleed to menstruate.

There are certain infusions that calm menstrual cramp. You could incorporate them in your diet and see if it has any effect. Trying shouldn't do any harm. If regular medicine wasn't able to help, I'd try with alternatives. See if you can find a chinese traditional medic, try things like accupuncture.

[Dena]

I only have a guess and that is with constant estrogen and progesterone, what may be a uterus is building up a lining. Because your hormones aren't cycled, this doesn't have a chance to break down as it should monthly. If you have had bleeding in the past, I suspect that discontinuing HRT for a couple of weeks might result in bleeding again as the lining breaks down.

The big problem is figuring out just what type of plumbing you have internally. As all of the modern imaging really hasn't provided anything useful, it sounds like you are going to need good old fashion exploratory surgery. I would recommend if you take this path that you be very careful with your choice about surgeons and select one that has experience in GCS.

[Doreen]

I only have a guess and that is with constant estrogen and progesterone, what may be a uterus is building up a lining. Because your hormones aren't cycled, this doesn't have a chance to break down as it should monthly. If you have had bleeding in the past, I suspect that discontinuing HRT for a couple of weeks might result in bleeding again as the lining breaks down.

The big problem is figuring out just what type of plumbing you have internally. As all of the modern imaging really hasn't provided anything useful, it sounds like you are going to need good old fashion exploratory surgery. I would recommend if you take this path that you be very careful with your choice about surgeons and select one that has experience in GCS.

I actually contacted Dr. Bowers, provided her mri's, ultrasounds, etc.. Her suggestion was see a geneticist.. the same one who coincidentally I was already informed probably wouldn't know.  Makes you wonder if anyone out there is interested.. at all.. besides me. I'm only 'interested' because Its hurting me non stop.   I'll try some more non traditional approaches... My faith isn't that high.

[josie76]

I certainly don't know but kinda sounds like endometriosis, the uterine lining growing in the abdominal cavity.

Something I know you can do, get each imaging place to make you CDs of the scans. These will be in sliced images called DICOM files. Many times a basic viewer will be on the CD with the scans so you can look yourself.

1: contact radiologists to look at the scans. Most doctors you see in their offices, will never look at the scans, they just read the radiologist report on what was seen. If you tell a radiologist what to look for, they will spend more than a 30 minute session glancing through the data.

2: you can download a free 3D imaging software from the Brazillian National Healthcare System. This software can read in the DICOM slices and reconstruct a 3D image of the scan. With that software you can filter different tissues depending on the scan's quality. You can see internal organs and blood vessels in 3D or like I was looking at filter just bone and take all the soft tissue out. Just have a newer computer because the image processing takes a while and it will look like it crashed. That is the computer will show the program is "not responding".

3: email various university medical schools. You may find some department head or professor who would be interested in looking at the scans. Those doctors who are teaching usually have more "side interest" than the doctor in an office with a schedule of patients to keep and golf to go play.

[Doreen]

I certainly don't know but kinda sounds like endometriosis, the uterine lining growing in the abdominal cavity.

Something I know you can do, get each imaging place to make you CDs of the scans. These will be in sliced images called DICOM files. Many times a basic viewer will be on the CD with the scans so you can look yourself.

1: contact radiologists to look at the scans. Most doctors you see in their offices, will never look at the scans, they just read the radiologist report on what was seen. If you tell a radiologist what to look for, they will spend more than a 30 minute session glancing through the data.

2: you can download a free 3D imaging software from the Brazillian National Healthcare System. This software can read in the DICOM slices and reconstruct a 3D image of the scan. With that software you can filter different tissues depending on the scan's quality. You can see internal organs and blood vessels in 3D or like I was looking at filter just bone and take all the soft tissue out. Just have a newer computer because the image processing takes a while and it will look like it crashed. That is the computer will show the program is "not responding".

3: email various university medical schools. You may find some department head or professor who would be interested in looking at the scans. Those doctors who are teaching usually have more "side interest" than the doctor in an office with a schedule of patients to keep and golf to go play.

That is an excellent suggestion, thank you very much.  More tools for the toolbelt are ALWAYS welcome!   I have thought about endometriosis, though (alllegedly) the endometrial lining was measured at (if i recall right) normal thickness on the US.  I do have the imaging cd's and have also noticed most docs completely ignore the actual pictures... they just read the assessment.  I ASKED the ob/gyn with ultrasound pics and MRI's in hand... to LOOK at the photos.  Then he admitted he couldn't read ultrasounds very well? WTF an ob/gyn that can't read it? Thats basic stuff.  Needless to say, I don't put much faith in his pelvic cystoscopy he performed.  He told me none of this, nor that he wouldn't have a urologist on hand during the procedure.  I hate when doctors outright lie to you.

He provided no answers, only more questions.   Gah!.  Story of my life.

Any way you could provide the link to that brazillian site? been looking a bit, not a lot of luck. I'll continue looking.

[Sharon Anne McC]

*
Doreen:

Yes, it might be possible that you have incomplete anatomy screaming at you.

Here's to commiseration and frustration.

It is quite frustrating when medical professionals fail to respond to our enquiries, fail to explain our predicament, or just plain fail to do their job and fail to use their expertise to render their determination.

Here in the USA, used to be that doctors had no obligation to be honest with their patients and patients had no right to their medical records.

I endured mysterious lower abdominal pains when I was age 12.  I recall knowing that it had nothing to do with intestinal and urinary systems, but neither my father nor the physician would tell me what was wrong.  Those pains eventually diminished and ceased.

Jumping ahead to my own exploratory procedure in 1982.  First the doctor scanned me using a fluoroscope.  He told me 'I see nothing'.  What you 'see nothing'?  Nothing male?  Nothing female?  'Nothing' what?

He told me that he needed to open me up and take a direct exam; he gave the release form to me to sign and I was soon 'under'.  His report to me when I awoke was that I am absent internal male structure; he deflected  answering my questions about female anatomy, but eventually told me that I am female Inter-sexed.  My 'hysterectomy' scar is my souvenir of that experience.  In those days, the medical center was under no requirement to provide access for me to read or receive a copy of my medical records.

I experienced several injuries from a car crash in 1999 that brought me to numerous scans, MRIs, X-rays.  The radiologists made no comment on the prospective absence of female structure after observing my 'hysterectomy' scar.  I'm certain that they would have questioned me if their scans showed internal male anatomy.

My primary confirmed the presence of ovaries in 2015.  My gynecologist confirmed the absence of internal male structure and the presence of a cervix the next year.

My thoughts are that I'll likely never know if my exploratory team removed any internal female anatomy because those records are long-time.  I do know that had I had appreciable internal female anatomy, then I would have felt their presence.  Perhaps he removed vestigial structures?

But at least nowadays patients in the USA have the right to all their medical records.





*

[josie76]

That is an excellent suggestion, thank you very much.  More tools for the toolbelt are ALWAYS welcome!   I have thought about endometriosis, though (alllegedly) the endometrial lining was measured at (if i recall right) normal thickness on the US.  I do have the imaging cd's and have also noticed most docs completely ignore the actual pictures... they just read the assessment.  I ASKED the ob/gyn with ultrasound pics and MRI's in hand... to LOOK at the photos.  Then he admitted he couldn't read ultrasounds very well? WTF an ob/gyn that can't read it? Thats basic stuff.  Needless to say, I don't put much faith in his pelvic cystoscopy he performed.  He told me none of this, nor that he wouldn't have a urologist on hand during the procedure.  I hate when doctors outright lie to you.

He provided no answers, only more questions.   Gah!.  Story of my life.

Any way you could provide the link to that brazillian site? been looking a bit, not a lot of luck. I'll continue looking.

Here it is
https://www.cti.gov.br/en/invesalius

Radiologists are MD's who specialized in reading scans, xrays, sonograms but almost never interact with the patient themselves. They do a quick look-see to note any abnormalities that jump out or sometimes spend more time examining what the referring doctor was concerned about. IF you can just see a Radiologist and ask them directly to look for what you think it is then you might get a better answer. None of the doctors or PA's that have seen my skeletal scans want to say one way or the other. Several have asked if I had the correct scan because they thought it looked female but would not elaborate. One said maybe try finding a radiologist to answer my questions. I just kind of figured at that point my research into anthropological skeleton sexing traits had answered my questions far enough. I'd still like to get my AR gene mutation test done but my doctor says there is no medical nessecity for it since there is no treatment asside from what I am doing now by transitioning anyway. He too suspects Mild AIS but I'm left with no definitive answers.

Now I wonder though, if I did have genetic AR mutation, would that help to push for insurance approval for SRS? 

[Doreen]

Here it is
https://www.cti.gov.br/en/invesalius

Radiologists are MD's who specialized in reading scans, xrays, sonograms but almost never interact with the patient themselves. They do a quick look-see to note any abnormalities that jump out or sometimes spend more time examining what the referring doctor was concerned about. IF you can just see a Radiologist and ask them directly to look for what you think it is then you might get a better answer. None of the doctors or PA's that have seen my skeletal scans want to say one way or the other. Several have asked if I had the correct scan because they thought it looked female but would not elaborate. One said maybe try finding a radiologist to answer my questions. I just kind of figured at that point my research into anthropological skeleton sexing traits had answered my questions far enough. I'd still like to get my AR gene mutation test done but my doctor says there is no medical nessecity for it since there is no treatment asside from what I am doing now by transitioning anyway. He too suspects Mild AIS but I'm left with no definitive answers.

Now I wonder though, if I did have genetic AR mutation, would that help to push for insurance approval for SRS? 

Thank you very much for that... Ya its frustrating when I show the pictures to the docs and they just shrug their shoulders.  A medical doctor... shrugging?  As a matter of fact most of the 'professionals' I've dealt with lately have done that exact thing... my endocrinologist canceled my appointment and told me I had to see a  geneticist and she wouldn't deal with me till I did.   April.... so far away.  And these abdominal issues ..    At this point I'm researching HRT experimentation for induction of periods in ammenorhea and other options.  I had discontinued it for a week, and the symptoms only got worse. .. not to mention my deep bone pain is starting up again.  Yay for osteopenia.

I'll take a look at Invesalius and see what it comes up with, thanks very much

[Doreen]

*
Doreen:

Yes, it might be possible that you have incomplete anatomy screaming at you.

Here's to commiseration and frustration.

It is quite frustrating when medical professionals fail to respond to our enquiries, fail to explain our predicament, or just plain fail to do their job and fail to use their expertise to render their determination.

Here in the USA, used to be that doctors had no obligation to be honest with their patients and patients had no right to their medical records.

I endured mysterious lower abdominal pains when I was age 12.  I recall knowing that it had nothing to do with intestinal and urinary systems, but neither my father nor the physician would tell me what was wrong.  Those pains eventually diminished and ceased.

Jumping ahead to my own exploratory procedure in 1982.  First the doctor scanned me using a fluoroscope.  He told me 'I see nothing'.  What you 'see nothing'?  Nothing male?  Nothing female?  'Nothing' what?

He told me that he needed to open me up and take a direct exam; he gave the release form to me to sign and I was soon 'under'.  His report to me when I awoke was that I am absent internal male structure; he deflected  answering my questions about female anatomy, but eventually told me that I am female Inter-sexed.  My 'hysterectomy' scar is my souvenir of that experience.  In those days, the medical center was under no requirement to provide access for me to read or receive a copy of my medical records.

I experienced several injuries from a car crash in 1999 that brought me to numerous scans, MRIs, X-rays.  The radiologists made no comment on the prospective absence of female structure after observing my 'hysterectomy' scar.  I'm certain that they would have questioned me if their scans showed internal male anatomy.

My primary confirmed the presence of ovaries in 2015.  My gynecologist confirmed the absence of internal male structure and the presence of a cervix the next year.

My thoughts are that I'll likely never know if my exploratory team removed any internal female anatomy because those records are long-time.  I do know that had I had appreciable internal female anatomy, then I would have felt their presence.  Perhaps he removed vestigial structures?

But at least nowadays patients in the USA have the right to all their medical records.





*

On your note (or more accurately in response to you) I have always had these abdominal issues since puberty, but they were only periodically and I assumed it was constipation... even though I didn't remember having 'problems' going I'd drink prune juice and eat more prunes / fiber anyways... after going alot the symptoms would go away in a couple days.  In retrospect.. I feel like a complete idiot for not recognizing my own body symptoms.  Its still all one big guessing game though, and that has me frustrated probably most of all. 

Now last year whatever 'changed' has cause them to become chronic, nonrelenting... and has nothing to do with bowels or bladder.   I have no issues in those departments.  I mean at least they could check for endometriosis or something... or SOMETHING... suggestions.. *sigh*

[Dena]

Yes to X-rays not being read correctly. As a child I must have contracted valley fever which left a scar in my lung about the size of a base ball. The lab had a new guy read the X-ray and though I had serious cancer. I told the doctor to have the lab pull an older X-ray to compare with the new one and the new report said I was fine.

[Roll]

Based on my own experience with my mother's peritoneal cancer, and doctors failing to even check the peritoneal cavity (they tunnel vision "actual" organs it seems), I'd recommend having them look more specifically into it. Might fit with the endometriosis idea too.