So I finally found a doctor, specifically an ob/gyn that specializes in 'mullerian' (female reproductive tract) anomalies and she also helps trans fyi. She's incredibly wonderful, thorough, compassionate, everything you really want from a doctor, and only ... 8 hours away. One way. She works in the D.C. / Maryland metropolitan area. Ask me privately I'll share her name.
From what I've seen & heard she's also the head doctor of multiple hospitals.. and apparently what I have is an enigma to even her. At least she listened and is aware that it responds aggressively to lack of progesterone. Started me on a new medication primarily used for birth control, endometriosis, and menstrual disorders (Norethinodrone). Its only been day 3 on it, but ... the constant abdominal pain is down to a dull roar. I still feel it, like a lurking beast, but its not causing me to be doubled over in misery daily. I HOPE IT STAYS DOWN oh my gosh.. it honestly feels like a never ending period cramp fest, I have nothing else to compare it mentally to. It has been horribly and increasingly severe over the years... yes, years. To have relief? finally? Words can not describe how happy I am if it stays this way.
Anyways, further plans are to biopsy it or the fluids in it with ultrasound or CT scan guided imagery, and see exactly what it is inside me. What was ruled out was anything prostatic, or remnant of surgery (mostly ruled out). Too big to be a prostate, and its not even attached to the vaginal canal. Something I have known for eons. I still think its an immature uterus and NEEDS to be attached, something I informed her & the other docs about, but apparently they're still not convinced. Nevermind noones ever seen its like before.. ever..
Such is my life, my saga. I share here why? Who knows, maybe that 1 in a billion chance there is someone else like me with these issues, as unlikely as it may seem right now. And maybe they read this, and get insight into their own care.
Sounds like you really are a unique flower in the garden. :icon_flower:
It sounds hopeful at least Doreen. Maybe this doctor will finally be the one to really help you. I hope so.
Quote from: josie76 on August 25, 2018, 06:14:15 PM
It sounds hopeful at least Doreen. Maybe this doctor will finally be the one to really help you. I hope so.
Thank you gingerViktorKay and josie76. The saga isn't finished.. they really do need to find out why it responds so favorably to progesterone. Hopefully one day soon.
Been talking to the (latest) doctor that read my MRI's, CT's, etc... and I have been discussing my care with her as well. Frankly I value her opinions above all the other docs I've seen at this point too, a feather in her hat for the care she's provided... but..
She's not convinced my chronic pelvic pain is coming from the unidentified large 'tissue' inside the pelvic area. Its structurally similar in size to a very large prostate or a small uterus. When pressed though exactly what type of tissue it had (I asked if it had any musculature or not, or if it was just skin, what type of skin)... she stated "Unfortunately, The images did not clearly identify the tissue." She's also thinking its not responding hormonally when very clearly progesterone diminishes pain. FYI that's how uterus's respond too. Its not 'wishful' thinking either on my part, it clearly has an effect on the pain levels.
So here's a generalized question for folks reading this. If you can't adequately identify the hollow organ/tissue, have no clue what it is, and have not seen its like before... how can you rule out that its not causing the pain / cramping issues?
Its in the generally same anatomical position where the pain is located, and the organ itself is 'mobile' upon palpation (she pressed on it, and it 'moved'). She stated this ruled out remnant of surgery, as if it was part of the vagina but closed off it wouldn't have moved like it did. She also ruled out abnormal prostatic tissue, as frankly I have no androgens, BPH was negative, no urethra in it, and many other things that just don't fit for it to be even remotely considered appropriately prostatic.
I'm still convinced its a uterus. Its shaped like one, hurts like one, mobile like one, even has horns where the fluid flow was shown to be on the ultrasound. But noone wants to put their finger on it saying "This is what it is". That being said noone wants to even do a tissue biopsy of its exterior or interior fluids. I get the 'do no harm' philosophy, reallyi I do... but why am I the only one wanting to know what it is... if its viable as an organ.
GRRRRRRRR get my frustration? This has been yeaaaars in the works.. and scores of doctors later. #frustrated
organ definition - a part of an organism that is typically self-contained and has a specific vital function, such as the heart or liver in humans. Its self contained, and... if its determined to be viable it will serve a function. So I call it an organ, not a tissue.. but that's yet to be determined really.
I just don't get it!
You have a tissue or lump of tissue that is "unknown" in you abdomen.
You have pain in your abdomen.
It is clearly not a prostate and is not connected to the bladder or colon.
If it is "unidentifiable" then how do they know its not a tumor and so should be removed, right?
Shouldn't that be enough to do a biopsy?
Quote from: josie76 on September 02, 2018, 07:18:31 AM
I just don't get it!
You have a tissue or lump of tissue that is "unknown" in you abdomen.
You have pain in your abdomen.
It is clearly not a prostate and is not connected to the bladder or colon.
If it is "unidentifiable" then how do they know its not a tumor and so should be removed, right?
Shouldn't that be enough to do a biopsy?
My only assumption is inner held prejudices and religious bias. Why else would a doctor (and I've had far too many) look at me, find me a curiosity, then toss me aside because they can't figure me out. Refuse to do more than just the basic responses to my questions, no advice, no referrals to more advanced practitioners, NOTHING! Even this last one I had to ask her specifically to confer with her colleages because she didn't have any answers, again... was offering little to no suggestions other than a new medication, denied most of my reported symptoms... and the only recommended after care was 'pelvic floor therapy'. Ok, that's a decent starting point but 'therapy' if its potentially cancerous isn't going to do anything..at all.. to a tumerous mass.
At first she, and even I suggested biopsy. Now she doesn't want to do it, cited "Do no harm". She hasn't completely ruled it out though... maybe I should press her. I doubt she'll be willing to if I asked. No radiologist I've talked to yet wants to do it, too unknown for them to contemplate (exactly what I was told fyi.. and that they weren't really qualified????) The folks at duke didn't even admit its existence at all until a month & a half later, many emails, and pressing the endo I had there multiple times. Its like I've fallen into some deep dark religious taboo black hole that noone wants to confront.
Sadly none of this is conjecture or being made up, or drama conjured by one needing such in their life. I seek to be drama (and pain) free. I just want answers, damn it. And noone on earth in the "medical professional" category is seemingly willing to help above just the most cursory solutions. I use that term 'medical professional' very lightly, as if you were truly a professional you would seek to care for even the most obscure health problems.
Hello Doreen, Josie, ginger. everyone....1st, let me say Doreen how sorry to hear all the stuff you are going through and know that you are not alone in your struggle to get answers. I too have been to my wits end at times with the shoulder shrugs, I don't knows, and dead ends because of my "uniqueness".. Yes it is a "if its not broke " attitude... a generous guess, most likely liability related
one of my many story's you may appreciate.....
I have some what but of course different the same kind of experience having abdominal pains / cramps and feelings what I would describe as intestinal hernia just below the waist line. This has gone on for years. Just a reminder, I am intersex, male but externally near female in appearance, in my heart mind soul all male, just never had scrotum, functioning testicles, produced testosterone , micro, micro, penis, etc..But on that same note, my doc knows too well that my testicles are, if anywhere at all, in the abdomen. I have asked for years why they cant go exploring. the reason is, they have to have a reason and pain is not it. they have to have some sort of reason to suspect a particular "thing is causing it" in my case, as previously posted, being intersex, my testicles were very tiny, non functioning, but that isn't enough even with a fear of cancer, first a psa must be done, xray, then ct, mri, ultrasound ect. here is the rub...
Unless the person reading the xray, ct, what ever is looking specifically for pea size testicles, they are looking for only any signs of tumor or cancer by color /contrast anomaly. and the notes will come back noting any irregularity's such as spots on liver/ kidneys etc, normal stuff. They will not note pea size testicles in abdomen, they will assume they are removed or something.
I began to ask specifically where were my testicles, of which my doc shrugged and said I don't know, but there is no notes of problems.. Ah, but I said, did they "SEE THEM? ?" locate them?" so I asked the doc to check which then spurred another CT scan, which was now inconclusive. So, remembering, knowing they need a reason, my pain continued to get worse. and a ultrasound was ordered to locate my testicles.
Now that turned into a spectators sport for sure at the imaging center, who doesn't want a chance to see a real live intersex person..... I just put a towel over my face as they gawk at me But, success at last, one tech after another came in and kept asking me where I thought they were. my history, if I had them removed etc... eventually they called my doc and suggested a trip to ER because of "NO Blood flow to testicles" (the reason), of which they could not determine were even them. lol. pass the buck. So being I am already going to the university for neuro muscular disorder and numerous other things, that was my choice, and its was off to there.
24 more hours of spectator sport in the ER and finally, One of the directors of urology walked in, cleared all of the room, told them to remove the imaging machine, enough pictures she said, she needed an empty room.
She walked over to me and apologized and said something like, It seems you have very tiny non functioning testicles in your abdomen, but you knew that, its been like that your whole life. What I believe is going on, you have no blood flow to either and standard protocol is to remove them, Its your choice where you go, but if you want to set up an appointment with us at our clinic, we can remove them and while we are at it, insert some prosthetic testicles. you don't have and actual scrotum, but a cavity, but we can make it work, and maybe you can feel a little better about things.
I waited a second, took the towel of my face and wanted to hug her. the first doc in 50 years that understood. But today, I have them.. a little normal finally and a lot less pain. for asking the right question .
this is a synopsis of what occurred but I have learned now to press and ask, they do not treat things as if its in a "cloud of information" even though all my docs are in the network with access, but each as an individual thing.
Maybe this helps explain things
DDan
Quote from: dustydan on September 02, 2018, 03:48:37 PM
Hello Doreen, Josie, ginger. everyone....1st, let me say Doreen how sorry to hear all the stuff you are going through and know that you are not alone in your struggle to get answers. I too have been to my wits end at times with the shoulder shrugs, I don't knows, and dead ends because of my "uniqueness".. Yes it is a "if its not broke " attitude... a generous guess, most likely liability related
one of my many story's you may appreciate.....
I have some what but of course different the same kind of experience having abdominal pains / cramps and feelings what I would describe as intestinal hernia just below the waist line. This has gone on for years. Just a reminder, I am intersex, male but externally near female in appearance, in my heart mind soul all male, just never had scrotum, functioning testicles, produced testosterone , micro, micro, penis, etc..But on that same note, my doc knows too well that my testicles are, if anywhere at all, in the abdomen. I have asked for years why they cant go exploring. the reason is, they have to have a reason and pain is not it. they have to have some sort of reason to suspect a particular "thing is causing it" in my case, as previously posted, being intersex, my testicles were very tiny, non functioning, but that isn't enough even with a fear of cancer, first a psa must be done, xray, then ct, mri, ultrasound ect. here is the rub...
Unless the person reading the xray, ct, what ever is looking specifically for pea size testicles, they are looking for only any signs of tumor or cancer by color /contrast anomaly. and the notes will come back noting any irregularity's such as spots on liver/ kidneys etc, normal stuff. They will not note pea size testicles in abdomen, they will assume they are removed or something.
I began to ask specifically where were my testicles, of which my doc shrugged and said I don't know, but there is no notes of problems.. Ah, but I said, did they "SEE THEM? ?" locate them?" so I asked the doc to check which then spurred another CT scan, which was now inconclusive. So, remembering, knowing they need a reason, my pain continued to get worse. and a ultrasound was ordered to locate my testicles.
Now that turned into a spectators sport for sure at the imaging center, who doesn't want a chance to see a real live intersex person..... I just put a towel over my face as they gawk at me But, success at last, one tech after another came in and kept asking me where I thought they were. my history, if I had them removed etc... eventually they called my doc and suggested a trip to ER because of "NO Blood flow to testicles" (the reason), of which they could not determine were even them. lol. pass the buck. So being I am already going to the university for neuro muscular disorder and numerous other things, that was my choice, and its was off to there.
24 more hours of spectator sport in the ER and finally, One of the directors of urology walked in, cleared all of the room, told them to remove the imaging machine, enough pictures she said, she needed an empty room.
She walked over to me and apologized and said something like, I seems you have very tiny non functioning testicles in your abdomen, but you knew that, its been like that your whole life. What I believe is going on, you have no blood flow to either and standard protocol is to remove them, Its your choice where you go, but if you want to set up an appointment with us at our clinic, we can remove them and while we are at it, insert some prosthetic testicles. you don't have and actual scrotum, but a cavity, but we can make it work, and maybe you can feel a little better about things.
I waited a second, took the towel of my face and wanted to hug her. the first doc in 50 years that understood. But today, I have them.. a little normal finally and a lot less pain. for asking the right question .
this is a synopsis of what occurred but I have learned now to press and ask, they do not treat things as if its in a "cloud of information" even though all my docs are in the network with access, but each as an individual thing.
Maybe this helps explain things
DDan
Thank you Dusty Dan.
I think most of the docs were convinced I had a prostate and seminal vesicles, though they were never truly visualized... even making up tiny blips on the imaging in one case trying to state that was what they were. Oh and the giant hollow tissue 'possibly prostatic due to patients chromosomal makeup'. This was before I had ANY genetic karyotype done, so I am really really wondering how they came to that particular conclusion anyways. Perhaps they ran a blood sample somehow somewhere in time and never informed me... a huge nono in modern medicine.
They've looked for streak gonads (and from what I hear from your description, it indeed sounds like a type of streak gonad), but were never able to locate any. They ran a InhibinB level to see if I had any gonadoblastoma tumor markers, also negative. At least that particular endo did a tiny bit more than all the others. He ran a AMH levels, also turned out negative.
From what I've researched though, MRI's and CT's won't locate tiny gonads or streak as a whole unless they are tumorous & growing. I do have pain sometimes, almost like pinching bilaterally from the central location of my main source of pain & discomfort. Its almost like I can draw a map to the ... frankly uterus & tiny ovaries. So what if they're located in a lower position & smaller than they should be? So what if I'm intersexed and 46xy chromosome makeup. They should at least acknowledge first, what their own scans have seen on more than one occasion, and even more so, patients reported symptoms.
They'd rather brandy a whole lot of diagnosis than come to any helpful conclusions, sadly.
Pseudohermaphrodite
46xy disorder of sexual development
Gonadal Dysgenesis
Differential diagnosis to 46xy complete gonadal dysgenesis
Primary ovarian failure
17 alpha hydroxylase deficiency
5 alpha reductase deficiency
Partial Androgen Insensitivity
Of course they make sure to note my genital reconstruction & vaginoplasty. Some take particular sordid pleasure making sure to call it a 'neovagina' every change they get.
Oh on a side note this particular 'neovagina' has vaginal mucosa, vaginal ph, and vaginal secretions. Eat that you bias docs.
I know there are others diagnosis, but one thing they never said.. male... other than when referring to my chromosomal makeup alone, thank the gods. They've also never accused me of gender dysphoria or being transgendered, which I find slightly amusing (even though they made comparisons in person with me present, something I'm not too happy about. No shame in being trans, I'm just not that and I have problems noone on earth apparently has).
The saddest thing was with the CT scan, I was incredibly specific. "I have an unidentified hollow organ like mass located between the bladder and the rectum that's approximately bladder sized, and was identified as a retroverted in lie uterus on the ultrasound". What the radiologist did? Didn't comment.. at all... completely avoided it. I got the images, it didn't just suddenly vanish overnight. What the fudgsickles do I have to do, provide color images and connect the dots?
_________________________________________
I'm glad you at least were able to finally find a doctor with compassion. My geneticist was pretty specific about not letting doctors near me again, and avoiding anyone operating on me. While I tend to agree, he was not very helpful with suggestions on pain prevention or any more information with specialists that might help. Just general guidelines and websites that I had long since discovered. I pray you have found the help you needed, and some resolution at least in your issues.
My thoughts.
The only thing I could add after reading your response. I have had at least 10 or more continuous hours of ultrasound imaging in just one sitting while different "specialist ' come and assist urologist and techs guide through and describe the veins, vessels, canals, and organs in order to locate the actual "gonads/testicles and anomalies. which then they had to enlarge imaging because the testes were so small, but they were able to visually see lesions and limited or no blood flow.. I am not trying to imply that is your problem but maybe a solution for determining or eliminating.
My point is , They should be able to pin point for you, with an ultrasound with the same process exactly what is what.
The strategy/your end is figuring out the why they would have to, the "Why/reason"
Hope you can find some resolution, my primary care doc is my "go to" and basically asks me what he can do to help.
Also , I might add something about my partial "scrotoplasty and testicle implants, what was to be a 30 to 45 min surgery was 4.5 hours.My urologist, not being the same as in the above story but from the same general place, had two others/assistant's with him. He at first wanted to drag this out over a year, it ended up being a couple months after hearing my plea's. I asked him about certain things post op, I guarantee he went way farther than we initially thought he would. he mentions removing a bunch of scar tissue from the now scrotum, but gives me no explanation. He did something which has cause my penis to be much larger, but when I ask he say's "I cant speak to that, I removed the non functioning testes, implanted the prosthetic's, are they ok? and is your pain gone? that's what I can speak to" I see the little dance of words. He asks if I am satisfied.. I of course am.
DDan
Doreen, I don't know if this would be of any help but while I have been doing research on doctors performing laproscopic pull through peritoneal vaginoplasty on AIS and MKRH patients I did happen on this study from 1980
Müllerian Duct Remnants in the Male
Article in British Journal of Urology 51(6):488-92 · January 1980 with 113 Reads
DOI: 10.1111/j.1464-410X.1979.tb03584.x · Source: PubMed
Cite this publication
R J Morgan
D I Williams
J P Pryor
Quote from: josie76 on September 03, 2018, 07:31:11 PM
Doreen, I don't know if this would be of any help but while I have been doing research on doctors performing laproscopic pull through peritoneal vaginoplasty on AIS and MKRH patients I did happen on this study from 1980
Müllerian Duct Remnants in the Male
Article in British Journal of Urology 51(6):488-92 · January 1980 with 113 Reads
DOI: 10.1111/j.1464-410X.1979.tb03584.x · Source: PubMed
Cite this publication
R J Morgan
D I Williams
J P Pryor
Ya Mullerian Ducts intact, mullerian ducts remnant, were 2 other diagnosis (I had forgotten those). When I pressed the ob/gyn about it she stated it 'felt like' a uterine horn & ovary. To her credit she was going to use a long needle to try to aspirate the contents, but it apparently moved on her (ruling out surgical remnant from vaginoplasty) and she stated she felt very uncomfortable sticking a needle in blindly. I would've gladly let her use one of the ultrasound machines I'm positive she has, but basically declared I needed to get someone local to do it. Mind you noone local wants to do it (I asked).
Make a long story short, ya, mullerian remnant is what they said I have. In some cases the whole thing. Some day I'll find out.
Another one for reference Mullerian endometriosis in males on estrogen therapy.
J Urol. 1980 Nov;124(5):722-3.
Endometriosis of the male urinary system: a case report.
Schrodt GR, Alcorn MO, Ibanez J.
Abstract
Tissue histologically indistinguishable from endometrium was removed from the bladder of a 73-year-old man. The lesional tissue involved the right ureterovesical junction, producing hydronephrosis on the right side. The patient had an adenocarcinoma of the prostate and had been on estrogen therapy for 5 years before diagnosis of endometriosis. Two previous reports of endometriosis in male subjects, who were also on estrogen therapy, are reviewed briefly.
Here's another case study
Martin JD Jr, Hauck AE. Endometriosis in the male. Am Surg. 1985 Jul;51(7):426-30.
This may be of no help but I thought maybe it could.
Quote from: josie76 on September 03, 2018, 09:17:01 PM
Another one for reference Mullerian endometriosis in males on estrogen therapy.
J Urol. 1980 Nov;124(5):722-3.
Endometriosis of the male urinary system: a case report.
Schrodt GR, Alcorn MO, Ibanez J.
Abstract
Tissue histologically indistinguishable from endometrium was removed from the bladder of a 73-year-old man. The lesional tissue involved the right ureterovesical junction, producing hydronephrosis on the right side. The patient had an adenocarcinoma of the prostate and had been on estrogen therapy for 5 years before diagnosis of endometriosis. Two previous reports of endometriosis in male subjects, who were also on estrogen therapy, are reviewed briefly.
I'm on estrogen, but they haven't seen any endometrial tissue.. not that my symptoms aren't similar. Norethindrones one of many uses besides birth control is treatment of endometriosis. Perhaps its helping? I also don't have any general problems with the bowels or bladders. Per my ob/gyn she wants me to stay on norethindrone and progesterone for a while (as well as estrogen patches)... couple weeks at least. The pain comes & goes, but overall its better than it was before I saw her. She thinks its the elavil helping, I personally suspect its not the elavil. I had been on it before for migraine help, and it did squat. To either headaches or cramps. She IS the doc though, so I'm doing my best to follow her instructions and provide what feedback I can. Not that docs can 'do no wrong' as some think... as so often they have in my case. I'm giving her the benefit of the doubt though. Maybe its the combination of norethindrone and elevil doing the trick. I just wish the docs would pay attention when I report that progesterone will diminish symptoms ??? No clue why they don't... but that's been the standard approach, ignoring the obvious elephant in the room.
Besides all the hoopla, to me the most wonderful development is... no migraines!! Once I started and addressed the concerns with the pelvic pain,
the migraines have diminished to almost nothing. The migraines were going on even longer than the pelvic pain.. I'd hate to think it was the precursor to all my problems, but ... the facts kind of speak for themselves at this point. Oh, I still get headaches but I would wake up with just the most murderous migraine as well as feeling like someone kicked me in the gut. Pain SUCKS. I have a large cyst nestled in the back of my head I was convinced was causing the migraines.. apparently it was this structure in my abdomen, which seems... dubious to me at best. The human body is an amazing thing.. especially this one :embarrassed:
I know how pain SUCKS. I have lived with nerve pain for over a year since herniating two discs in my lower back. They finally did surgery to cut out the herniated disc sections but now I have continuing pain and numbness with weakness in my right leg and foot.
I didn't know if finding case studies of genetic cis men with endometriosis appearing after being on estrogen therapy could help spur your doctor to look for it. If cis men could have those cells survive and eventually trigger growth then you who were born intersex and have an "unidentified" mass in your abdomen should get consideration.
Quote from: josie76 on September 04, 2018, 05:30:54 AM
I know how pain SUCKS. I have lived with nerve pain for over a year since herniating two discs in my lower back. They finally did surgery to cut out the herniated disc sections but now I have continuing pain and numbness with weakness in my right leg and foot.
I didn't know if finding case studies of genetic cis men with endometriosis appearing after being on estrogen therapy could help spur your doctor to look for it. If cis men could have those cells survive and eventually trigger growth then you who were born intersex and have an "unidentified" mass in your abdomen should get consideration.
She stated the tissue/mass has been present for a very long time, one of the reasons she ruled out it being the cause of pain. I actually disagree with her as I think prolonged HRT exposure triggered its growth, but oh well.
Unless/until they're willing to do a biopsy, we'll probably never know for sure unless it grows into something more specific. She stated a follow up ultrasound, but didn't state when. Now I have a squirrely xray in my spine and a followup MRI with that to deal with lol. Can't win.
Have had a nice long chat via email with the ob/gyn that is overseeing my care in these difficult times. Had a recent 'flare up' for 3 days where I had pain from hell, but it slowly receded. I'm going to be especially curious if this repeats in about a month.
I discussed with her the possibilities for care, and she's STILL convinced the 'tissue' as she calls it is not the source of pain. I suspect she is firm in her conception that its non uterine, but is extremely reluctant to do any more testing of it, no tissue biopsies. She's 'willing' to but extremely reluctant.. and wants to remove it.
All I ever wanted is to know 1) Is it a uterus? It sure as hell looks & behaves like one, at least in my opinion. 2) Is it fixable? Apparently in MRKH syndrome when girls are born with a disconnected, or partial uterus all they do is remove it??? That seems....so incredibly sad that they aren't willing to do more!! WHY. She says risk of internal bleeding, scarring & infection. That's true with any damned surgery. At least give us the option!
IN all fairness she's spent a lot of time with me, and is still willing to help. All the other doctors just shoved me off like one of natures curiosities best not looked at too closely.
For now I'm taking a 'wait and see' approach. In other words I'm looking for more options, but they seem extremely few at this point.. and its very depressing. To have something so close, but no physician capable, willing, or knowledgeable enough to help to actually fix it... or if nothing else definitively identify it without simply 'removing' the offending tissue.
I still find it hard to comprehend why they don't see it through my eyes. Its like I'm apparently challenging everything they hold sacred. My doc thinks its just because of the nature of pelvic pain, that poking around inside can often make it worse. And yet she admits that in MRKH the uterus is the source of the pelvic pain. I don't get it. WHY do they not want to definitively identify............ ??? ><
Talk to your SRS surgeons. PLEASE. Maybe some of them have ideas? Tell them my story... my sadness. Have them contact me. Please PM me if you know of someone.. anyone.
While I know this study doesn't quite fit you, it does point out that even MRI need to be read by someone with experience with particular anomalies. Here a radiologist with decade of Mullerian agenesis experience was needed to find and correctly identify uterine remnants in some patients with MRKH.
Mayer-Rokitansky-Kuster-Hauser Syndrome: Diagnosis with MR Imaging
Margaret Anne Hall-Craggs, Cara Elizabeth Williams, Sophie Helen Pattison, Alex Paul Kirkham, Sarah Margaret Creighton
Author Affiliations
Published Online:Dec 1 2013
https://doi.org/10.1148/radiol.13130211
Conclusion
Rudimentary uteri are common in patients with MRKH syndrome. They can be relatively large and have functioning endometrium, which can be associated with pain. Uteri have a constant caudal relationship to ovaries. Ovaries are commonly ectopic,
with more than 10 years of experience in imaging patients with congenital müllerian anomalies. The presence and site of rudimentary uterine buds were assessed, and uterine volumes were calculated. Differentiation of the uteri into one, two, or three layers (myometrium, junctional zone, and endometrium) was recorded, and any sign of intraluminal blood was documented. Ovarian volumes and positions were assessed,
In one patient, the uteri were positioned within the inguinal canals, with the ovaries lying within the internal inguinal orifice lying adjacent to the upper pole of the uteri (Fig 1). All uteri were immediately related to the caudal margin of their paired ovary, and this was a constant relationship, even when the ovaries were ectopic
Quote from: josie76 on September 11, 2018, 04:39:08 AM
While I know this study doesn't quite fit you, it does point out that even MRI need to be read by someone with experience with particular anomalies. Here a radiologist with decade of Mullerian agenesis experience was needed to find and correctly identify uterine remnants in some patients with MRKH.
Mayer-Rokitansky-Kuster-Hauser Syndrome: Diagnosis with MR Imaging
Margaret Anne Hall-Craggs, Cara Elizabeth Williams, Sophie Helen Pattison, Alex Paul Kirkham, Sarah Margaret Creighton
Author Affiliations
Published Online:Dec 1 2013
https://doi.org/10.1148/radiol.13130211
Conclusion
Rudimentary uteri are common in patients with MRKH syndrome. They can be relatively large and have functioning endometrium, which can be associated with pain. Uteri have a constant caudal relationship to ovaries. Ovaries are commonly ectopic,
with more than 10 years of experience in imaging patients with congenital müllerian anomalies. The presence and site of rudimentary uterine buds were assessed, and uterine volumes were calculated. Differentiation of the uteri into one, two, or three layers (myometrium, junctional zone, and endometrium) was recorded, and any sign of intraluminal blood was documented. Ovarian volumes and positions were assessed,
In one patient, the uteri were positioned within the inguinal canals, with the ovaries lying within the internal inguinal orifice lying adjacent to the upper pole of the uteri (Fig 1). All uteri were immediately related to the caudal margin of their paired ovary, and this was a constant relationship, even when the ovaries were ectopic
Thank you I have messaged the only email I could find in it, we'll see what they say. I just find it strangely odd that noone seems curious and wants to find out anything up to this point. Maybe they'll have enough curiosity to explore.
Quote from: josie76 on September 11, 2018, 04:39:08 AM
While I know this study doesn't quite fit you, it does point out that even MRI need to be read by someone with experience with particular anomalies.
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.
QuoteDoreen:..I just find it strangely odd that noone seems curious and wants to find out anything up to this point. Maybe they'll have enough curiosity to explore.
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
Quote from: dustydan on September 12, 2018, 04:47:54 AM
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.
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
Quote from: Zoe_Kay on October 09, 2018, 12:55:29 AM
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.
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.