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Medical Provider support in your journey - a survey

Started by Cindy, September 25, 2014, 07:34:58 PM

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Cindy

I'm getting a report together on what support you were able to get from therapists, endocrinologists, family doctors, surgeons etc during your transition.

Were you satisfied?

Dissatisfied?

What support?

Any of the issues you had.

Can you also say what country you are in.

I want to write this up as a report to be presented so please be specific about issues both good and bad.

Thanks

Cindy



  •  

Mariah

So far everyone I have now has been supportive. The Endo left it up to me as to which option I wanted for the HRT while taking in account which would better for me due to my medical history. The current primary care doctor has been proactive at helping in anyway she can from the needed referrals to picking up the appointment slack a bit so I don't have to head over to Everett as often in the beginning to see the Endo. The therapist has been awesome. I was extremely nervous going in, but she was able to get me relaxed fairly quickly and has been a big help so far in my transition especially since my having gone full time. My first interactions with the surgeon my insurance is contracted with haven't occurred yet. I was partially satisfied and dissatisfied with my first primary care doctor who dropped me as a patient as soon as I told him of my need to transition, but he did aid in the finding of a doctor who would aid me in my transition in the office and he also ordered the hormone tests that would be needed for the HRT. The first Endo I was going to be sent to waited 6 weeks to check over the chart just to consider scheduling an appointment months down the road. After waiting a month and still not having anything scheduled I was dissatisfied enough to have the referral sent to the Endo in Everett. Otherwise I have been happy with everyone that I have dealt with through my transition journey so far. No other issues have occurred so far other than having to use skype for therapy and traveling to Everett for the Endo. No one local deals with either issue. The country I am in is the United States.
If you have any questions, please feel free to ask me.
[email]mariahsusans.orgstaff@yahoo.com[/email]
I am also spouse of a transgender person.
Retired News Administrator
Retired (S) Global Moderator
  •  

Jessica Merriman

United States - Oklahoma
Therapist's - None better, fully versed in WPATH SOCs. Previous trans experience. Located at University Psychology Department.
Endo - Fantastic, accommodating and well versed in WPATH SOCs. Previous trans experience.
Pharmacist - Wonderful. No experience before me with trans people, but studied on HRT before my next visit. Double checked all meds and history and has been great.

No bad experiences with providers or their support/office personnel.

Only issue is with lack of providers who will treat trans people. This makes waiting list's VERY long as the many trans people have to wait for the few providers. We desperately need more providers.
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Jo-is-amazing

For me at least every professional I've talked to about it has been really supportive. Even if they have no clue about Trans* issues, or what I am asking of them, they always smile and show sympathy (Female Dr's have the tendency to put there hand on me and call me a 'poor dear' and reassure me that I will be beautiful and everything will be alright every time I tell them my circumstances) :P

I really like that it makes me feel happy :P

If they have no clue about trans* issues most Dr's I've seen tend to either call someone who does, or refer me to someone who does just to make sure the drug that they're prescribing or whatever is compatible with what  am taking. So yeah Im really happy about that.
In terms of specialists, all of those I've dealt with have been empathetic and understanding, and I haven't had any problems with my Endo or any of the various Psychiatrists/ Psychologists I've talked to over the years.

I live in Brisbane Australia, although I would like to point out that the GP's I visit (3 would you believe it) are all allies, and are required by their practice to be so, and I have received all my referrals from them. So my experience is probably not typical of a normal girl in my circumstances :D
I am the self proclaimed Queen of procrastination
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immortal gypsy

Living in Sydney right now.

Most of my medical team are on board. I believe they they talk to each other more about me then to me :P. (It does actually save time, if I have a seizure I can tell one and it will generally filter through before I see them all).

The only gripe I could say is that the medical center I go to for script refills for anti convoulsants haven't asked me anything at all about my health or what if anything else I'm taking They have just wanted to get me in and out quickly. 
Do not fear those who have nothing left to lose, fear those who are prepared to lose it all

Si vis bellum, parra pacem
  •  

suzifrommd

Quote from: Cindy on September 25, 2014, 07:34:58 PM
I'm getting a report together on what support you were able to get from therapists, endocrinologists, family doctors, surgeons etc during your transition.

Were you satisfied?

Dissatisfied?

What support?

Any of the issues you had.

Can you also say what country you are in.

I want to write this up as a report to be presented so please be specific about issues both good and bad.

Thanks

Cindy

Getting competent psychotherapy was a nightmare.

* My insurance company referred me to a therapist who had minimal experience with trans people. She was not familiar with the term "cisgender". She kept talking about a "gentleman who went out dressed as a woman from time to time" as a suggestion for how I should deal with my dysphoria.
* I went to see a WPATH certified counselor who made me wait nearly 3 months for a psychiatric eval before he would see me. After that, I saw him, but the help was counterproductive. He tried to talk me out of HRT, telling me I'd be disappointed - that it would do nothing for my body hair or face (it has helped both).
* The psychiatric evaluation he sent me to was humiliating and useless. I was misgendered throughout, I was interviewed by staff with no experience, they seemed more interested in my sex life than in my gender identity, they disparaged the notion I could be transgender because I didn't pee sitting down, etc. I've posted the details elsewhere.
* I finally found a good therapist, but only after I changed insurance plans.
* I ran into blatant gatekeeping when I paid a therapist to evaluate me for a second surgery letter that the refused to write after I paid him. He wanted to see me again for another $190.00. The reasons he gave were specious and had nothing to do with my suitability for surgery.

Am I dissatisfied? Let's just say that I can see why so many of us attempt suicide if this is the sort of help we're offered.

Medical care was much better. I found a doctor who is experienced in prescribing hormones, and he's served as my general doctor as well. I'm pretty happy with the care I get from him. My surgeon was very competent and I'm happy with the job she's doing.

Have you read my short story The Eve of Triumph?
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Taka

story from northern norway.

i sent an email to the seemingly one and only authority on non-binary issues almost three years ago. the response i got was lacking in support, meani g that as a rather depressed and anxious person, it didn't help my feeling of insecurity, and their immediate wish to have me travel almost a thousand miles to see them, made me not take their offer to "try skype". they made me feel like i didn't really matter to them at all. i simply didn't answer that third email. took too long between each, and they never even suggested just talking on the phone. i'm no good at writing to people when i'm scared, so contacting them didn't work at all.

a little later i tried a sexologist in the nearest city, but she couldn't offer any treatment because it was apparent to her that i already knew who i am, and her urologist didn't feel confident enough to try giving cross sex hormones. he probably would have given sae sex hormones though, i think he has the qualifications for that.

so i gave up. for a long time. then again tried contacting someone in yet another cityhere in the far north. he couldn't help with anything eitherand suggested i try with that first person. so i try again, but they're already too busy to fit me into their schedule, they were the one who didn't answer my last email this time. kind of disheartening.

in august this year i tried yet again, someone in yet another city. she's been really helpful, and is currently trying to find someone who has worked with trans people outside the system before. but i kind of doubt she'll be able to, the system doesn't really lile doctors who give cross sex hormones to any odd trans person, and are doing their best to monopolize all treatment of trans individuals so that they can.. uh, control that nobody gets the wrong treatment? which in their eyes is anything other than the procedure used in the 70s or something.

within the system, it would take 3-8 years to transition completely. people who are taken in can be evaluated for way past a year just to be denied treatment. they are often abusive in language and the way they treat patients. even towards the very few selected individuals who manage to fit their way outdated criteria for treatment. i don't want to go there, unless that really is the only option there exists for me. i've heard that some men who were reluctant to fiddle with their bottom have gone in to get top surgery and come out with two breasts and one uterus less than they went in with. norway really needs some international attention, the way i hear that some trans people are treated here would make for a good horror flick. good enough to give both trans and cis people nightmares for years to come, if they add the right music and lighting to it.
  •  

Bimmer Guy

All positive:

1) Good therapist.
2) Easy, "informed consent" treatment for hormones at a LGBT medical clinic.  Wait time to get in was a month.  Then a two week wait to start the hormones.
3) Dr. Garramone in FL was my surgeon for top surgery.  He is fantastic.  Uses an easy check off list now as a "letter".  Your therapist no longer has to write an extensive letter.  It was a 2 week wait for a telephone consult.  It was a 6-7 week wait for surgery.  I did it in the Fall, which is his slower season.
4) I live near Philadelphia, PA in the U.S.

I am very lucky.
Top Surgery: 10/10/13 (Garramone)
Testosterone: 9/9/14
Hysto: 10/1/15
Stage 1 Meta: 3/2/16 (including UL, Vaginectomy, Scrotoplasty), (Crane, CA)
Stage 2 Meta: 11/11/16 Testicular implants, phallus and scrotum repositioning, v-nectomy revision.  Additional: Lipo on sides of chest. (Crane, TX)
Fistula Repair 12/21/17 (UPenn Hospital,unsuccessful)
Fistula Repair 6/7/18 (Nikolavsky, successful)
Revision: 1/11/19 Replacement of eroded testicle,  mons resection, cosmetic work on scrotum (Crane, TX)



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stephaniec

Midwest U.S.  superior medical team same hospital.
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Ms Grace

I'm in Sydney, Oz

Doctor - supportive of helping with my depression (triggered by my gender dysphoria big time) and getting me to see a shrink. He's a gay guy, I'm not sure he is very across trans issues but willing to learn through my process.

Main shrink - nice guy and supportive but very little trans experience when I started with him, mostly with helping trans people post transition. I think I'm the first one he's ever referred to an endo. He was pretty cautious initially, overly so. I guess he was wanting to deal with my depression and I had painted a fairly dire picture of my emotional state during my first attempt at transition so he had the brakes on even more. He kept on saying things which, to me, sounded like he was trying to work out my treatment from Dealing With Trans Patients 101 and, despite not needing to, he sent me to another shrink for a second opinion before referring me for HRT. I can't complain too much though, I think it was only three months between my first appointment with him and first endo appointment (seemed like forever at the time).

Shrink #2 - referred to for a second opinion. I only needed to see him the once and he was happy to recommend I be Referred for HRT. He was one of the main therapists for trans people in Sydney. I found him friendly, didn't treat me like I didn't know what I was talking about but I did find some of his questions a bit old school and invasive.

Counsellor - I decided to also find myself a counsellor at the Sydney Gender Center. He has been very supportive and friendly without leading me into conclusions or being a cheer leader for certain treatments. I wanted someone who wasn't a shrink so I could talk about stuff a counsellor was more likely to listen to me rather than try to read something into it. Although he isn't trans (that I know of) he is very understanding and has helped me break through a few barriers (like acknowledging my internalised transphobia...a very important step for me in accepting myself). Still go to him every few months. I should add that a second counsellor there helped with my transition at work by coming in and speaking to staff.

Endocrinologist - lovely guy, very understanding and supportive. Able to take the needs of his patients into account and aims for the best possible outcome. I know a number of other Sydney people who see him and speak equally highly of him, including non-transitioners. So he would seem to be supportive of non-binary folk who want some level of HRT too.

Electrolysis - I know this wasn't on your list but to me it is an essential part of treatment - not just for my physical appearance but also positive state of mind. I go to a great place that has a lot of trans clients - the two women there are very friendly, supportive and professional. A shame I can't get at least some kind of health rebate on the process because it costs $$$.
Grace
----------------------------------------------
Transition 1.0 (Julie): HRT 1989-91
Self-denial: 1991-2013
Transition 2.0 (Grace): HRT June 24 2013
Full-time: March 24, 2014 :D
  •  

Bookworm

I guess I am still early on in transition. I tried my counselor on campus (school in Texas) and that went sketchy, but she really did not know a whole lot. There was a phycologist who was really helpful, but she was only there once a week and did not see anybody on a weekly basis (she was just there for consulting/prescriptions). After dealing with that mess for a few months I kinds have up and since switching schools (I moved) I have not tried again.
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EmmaD

Melbourne, Oz

I have been very lucky in that I have been able to see very trans-experienced service providers without much delay.  They are all extremely supportive and it is only when I start listing them that I realise the talent I have managed to gather as what I call my support team.   The Psychiatrist and Psychologist both have extensive connections with other trans support professionals.  I do not access any support groups so these people are extremely important to me.  Socially (i.e. outside the team listed), I have done this alone.

GP - referred me straight away to psychiatrist (in first 5 minutes). Subsequently (after approval for HRT), my GP has managed all my HRT.  He has other trans patients and is in a practice that has other GPs with extensive trans experience. All visits are Medicare supported.  I tried my existing GP who said I should go to a specialist GP.  Tried one but didn't like the offhand approach to someone just beginning.  Almost like they didn't expect me to go the distance!  Glad I made the call as my current GP is amazing.

Psychiatrist - hugely experienced (has seen over 500 trans patients).  Only a 5-week wait.  Took 7 visits to finish his process but one was doing questionnaires and half of another was writing the report with me there.  Time may have also reflected where I was at.  Most visits are Medicare supported (if I remember to update the referral letter which I haven't bothered with lately). Will continue to see him every 3 months through the start of full time.

Psychologist - I have kept on seeing a very experienced gender specialist although the need is diminishing.  This means to me that I have my thought processes sorted (a bit!).  She is also full of strategies and ideas.

Voice Therapy - Psychiatrist referred me to La Trobe Uni speech pathology team.  Was able to go about 5 times before funding (theirs) ran out.  Then referred to a private speech therapist who has trans clients and have seen her 5 times as well.  Will continue up to a few months after full time.  Medicare supported to an extent (just ran out).

Electrolysis - Very important aspect of my transition and something I consider a part of the medical/psych requirement.  Very experienced team that I have been seeing for almost 3 years.  VERY EXPENSIVE process but it was where I started which was the best thing I have done.

Complaints?  None really. Maintaining referrals for Medicare support is a bit of a pain but that support isn't critical for me.  One thing that did give me pause was the warning I got about getting a mental health care plan from my GP to access Medicare support.  The comment was made that some people do not want that record sitting with Medicare. 

Sometimes I have felt a bit pre-judged in a negative way as though I wasn't really in need of help.  I wasn't presenting with a critical health issue but with something I have lived with for decades as a constant burden. Maybe if I had waited, the need would have been more obvious.

While I try not to think of the cost, in Australia, Medicare does help and I am not even going to try and think about what going through all the services above over 3 years might cost without that support.  I would love Medicare to pay for more but if they did, in all honesty, I am not where more support should be directed.

  •  

Rachel

Philadelphia Pennsylvania, USA

I switched primary care to Mazzoni a LGBT primary care. I love the place and my PA. They see primarily Trans and have 8 Doctors, PA's and NP's. They see a lot of people.

Therapy, 1st therapist was fantastic, she taught and trained area trans therapists. She is queer and married to a trans*
Therapy, 2nd therapist is great and trans* male.

Group at Mazzoni, very good.
HRT  5-28-2013
FT   11-13-2015
FFS   9-16-2016 -Spiegel
GCS 11-15-2016 - McGinn
Hair Grafts 3-20-2017 - Cooley
Voice therapy start 3-2017 - Reene Blaker
Labiaplasty 5-15-2017 - McGinn
BA 7-12-2017 - McGinn
Hair grafts 9-25-2017 Dr.Cooley
Sataloff Cricothyroid subluxation and trachea shave12-11-2017
Dr. McGinn labiaplasty, hood repair, scar removal, graph repair and bottom of  vagina finished. urethra repositioned. 4-4-2018
Dr. Sataloff Glottoplasty 5-14-2018
Dr. McGinn vaginal in office procedure 10-22-2018
Dr. McGinn vaginal revision 2 4-3-2019 Bottom of vagina closed off, fat injected into the labia and urethra repositioned.
Dr. Thomas in 2020 FEMLAR
  • skype:Rachel?call
  •  

AnonyMs

#13
I'm in Sydney, Australia.

My endocrinologist is awesome, and obviously has vast trans experience.

My psychiatrist has been great and really helped me. Really professional, and has quite a few trans patients. He's not one of the bad ones in Australia that you sometimes read about.

I visited the Gender Center anonymously a number of times more than 5 years ago, before starting HRT. Because I found a great psych, and the appointments are so slow at the Gender Center (obviously underfunded), and I can't go anonymously these days, I'm not going there anymore. I do like the current counselor a lot though.

I visited the [deleted] medical clinic in Sydney to get a couple of blood tests in the early days, but no letter means no HRT. They would have prescribed premarin anyway which is unacceptable, so I stopped going there.

I didn't see a psych for an HRT letter because I didn't want an official diagnosis of a mental disorder. I did it the other way until recently. The rules have changed though - its not a mental disorder anymore and I need more help than I used to.

I haven't told my GP anything (anyone know any good GP's in Sydney?). I do tell medical people when they might need to know (in my opinion of course), but I've been trying to leave as few records of it as possible - I don't trust computers not to get hacked and everything's on computers these days. I've been in hospital for unrelated reasons a few times and told them just in case. One doctor asked if I was post-op (I'm m2f and very obviously male) - I think he was just ignorant and curious. A surgeon started querying me about it, so I basically told him to piss off and stick to his own expertise - I could see he was going to lecture me and got rather annoyed.

Privacy and anonymity has been very important to me in the past, although less so now, and I don't feel that its adequately supported.

This site has been most helpful in finding my medical provider. The Gender Center can only provide a list of names without any opinion on them. Where else can you find out peoples experience with them? Its verging on the impossible to separate the good from bad without coming somewhere like this, and there's plenty of bad doctors around. This has been very important to me, as the medical profession does a very poor job of identifying doctor performance (and that's never going to change in Australia).

Its outside my current experience, but I've studied a lot and I don't think SRS is adequately supported in Australia. There's no way I'd go to an Australia surgeon for it, due both to their lack of practice and lack of patients speaking about their results. I don't trust a word any surgeon would say, and these are the only independent data that I have access to and that I feel its possible in any way to rely on (its not really good enough, but its not like anyone has done any peer reviewed academic studies on SRS results by surgeon...). I would like to see Australia supporting people going overseas surgeons, but I can't see that happening.

I feel fortunate to be in Sydney. If I were somewhere with less able support I think I'd be in very real trouble.

Edited to remove name of Medical Clinic. I don't need legal troubles.
  •  

kelly_aus

I'm in Australia.. Adelaide for now.

GP: My GP is great. I'm his 1st trans patient and he's never had an issue with it. He's educated himself on the basics and is competent when it comes to drug interactions with my HRT.. He'll happily write me fill-in HRT prescriptions.. Order bloods.. Write referrals. All this from a Bulk Billing clinic..

Therapist: I had a great gender therapist. Helpful and never judgemental. I think I always presented him a challenge, as I've never had any real physical dysphoria. But after 4 years with him, he set me free a couple of days ago. We agreed that I no longer need the kind of help he can provide. And that in all honesty, I don't really need a therapist at all.

Gyno: My gyno is great.. And a post-op trans woman. Again, I've presented her somewhat of a challenge as I have not reacted to hormones physically the way either of us expected.


Quote from: AnonyMs on September 26, 2014, 10:13:14 PM
I'm in Sydney, Australia.

This site has been most helpful in finding my medical provider. The Gender Center can only provide a list of names without any opinion on them. Where else can you find out peoples experience with them? Its verging on the impossible to separate the good from bad without coming somewhere like this, and there's plenty of bad doctors around. This has been very important to me, as the medical profession does a very poor job of identifying doctor performance (and that's never going to change in Australia).

How do you rate a doctor? It's highly subjective.

QuoteIts outside my current experience, but I've studied a lot and I don't think SRS is adequately supported in Australia. There's no way I'd go to an Australia surgeon for it, due both to their lack of practice and lack of patients speaking about their results. I don't trust a word any surgeon would say, and these are the only independent data that I have access to and that I feel its possible in any way to rely on (its not really good enough, but its not like anyone has done any peer reviewed academic studies on SRS results by surgeon...). I would like to see Australia supporting people going overseas surgeons, but I can't see that happening.

From a Medicare perspective, no, SRS is not adequately supported. Some of the most practised surgeons are the also ones who make the biggest blunders. I've only heard good things about the results of the Aus surgeons. And the 2 of Simon Ceber's that I've seen looked good to me. 

QuoteI feel fortunate to be in Sydney. If I were somewhere with less able support I think I'd be in very real trouble.

No, you'd cope, like others do.
  •  

AnonyMs

Quote from: kelly_aus on September 26, 2014, 10:45:17 PM
How do you rate a doctor? It's highly subjective.
Yes, and no. I've experienced a number of instances where the doctor was very clearly in the wrong, and where they should have known better. I don't expect miracles, but these were not competent. And what about the medical center I was referred to by the Gender Center that would have prescribed premarin. Those cases are easy to judge. Where its difficult is when they don't make any obvious mistakes, but you can't tell if it could be better. I tend to reserve judgement here. My endo on the other hand, I'm pretty sure he's an outstanding doctor - he's nice too, but I try to ignore that when judging expertise. Your gyno sounds interesting and its a good recommendation if only I were in Melbourne and actually needed one - much better chance of being good than randomly picking one out of a book.

Quote from: kelly_aus on September 26, 2014, 10:45:17 PM
From a Medicare perspective, no, SRS is not adequately supported. Some of the most practised surgeons are the also ones who make the biggest blunders. I've only heard good things about the results of the Aus surgeons. And the 2 of Simon Ceber's that I've seen looked good to me. 
For what its worth, I'll give you an example of my thought process here (please don't get upset). I don't know you, so I can't judge your words. I don't know how you measure good, and if its the same as my good (or better/worse). I don't know what you mean by "seen" - most results look pretty good when standing, but a more intimate view is completely different (there's some pretty shocking examples in Thailand, but I don't think these are from the big name surgeons). You've only seen/heard about a few Australian results, which have been ok, but the Thai surgeons have done thousands - if the failure rate of all surgeons was 1 in 100, then you'd hear probably about the Thai ones, and very likely not the Australian. I may be wrong on this, but I have a feeling that there are people in the Australian medical profession who are knocking that Thai surgeons, and I've met plenty of charismatic people that could convince people of just about anything, and I've met a few doctors like that too.

Against that I have to weigh up that my expertise is very limited - I'm not in the medical field, I've never see any SRS results personally, or talked to anyone post-op about it in person, and realistically there's not that many results that you can evaluate well. A few websites and forums, and while there's plenty of porn I only know the surgeons for a couple of cases and I'm not really into their artistic endeavors. I am very good at evaluating information though, and the end result of all this is nothing much of use to me.

Quote from: kelly_aus on September 26, 2014, 10:45:17 PM
No, you'd cope, like others do.
You're probably right, but the prospect of it being any harder is terrifying. I've unfortunately begun to understand why some people don't make it.
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Ms Grace

Seems that Sydney, Melbourne and Adelaide are fairly well catered for, don't know about the other state/territory capitals in Oz or the regional/rural areas.
Grace
----------------------------------------------
Transition 1.0 (Julie): HRT 1989-91
Self-denial: 1991-2013
Transition 2.0 (Grace): HRT June 24 2013
Full-time: March 24, 2014 :D
  •  

Cindy

#17
I'm particularly interested in comparing services in different countries.


I do know Qld is well catered for WA is a problem, Outback is a problem with therapy by skype being available from Adelaide and Melbourne.

  •  

Cindy

How about people in the UK and other places - comments?
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Jessica Merriman

The U.S has a problem with not enough providers for our community. There can be VERY long wait or searches for Endo's and the SRS surgeons will not accept our Medicare assignment. Other than that the one's I have found (Endo) is very good and knowledgeable, just heavily overloaded with new patient request's.
  •