Hi Karen
When I read your post, I said to myself I must reply to you. However, with moving and making other posts I forgot about you. So please accept my sincere apologies for neglecting you.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMI found that many endocrinologists(and MDs in general) have no clue about about dealing with long term post-ops.
My mum's doctor, who I told him about my medical condition and my current doctor who practices at the same medical centre who does not know about me. Do not know, as you say about the long term treatment of us. I know, I asked the Dr who knew about about me and he said, no I don't, except for basic blood and other similar tests.
I have only ever had two endocrinologists and both had experience in our medical condition. Finding a current endocrinologist, will depend on the new GP that I have seen and of course has already written a referral for me to see a gynecologist, so two referrals to see an endocrinologist and a psychiatrist (if I need one for the future) who deals with our medical condition is a good start in my opinion to further a relationship between patient and doctor.
This is why I sought a specialist General Practitioner (GP)in this area, one that has experience, because I do not think my current Dr has that knowledge and at the moment I do not feel comfortable in telling him. I know I have a real issue in telling anyone about me. I guess its one of the fundamental flaws of my character and I guess I love that flaw.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMI live and work in the suburbs.
I have always worked in the 'suburbs' and that is never going to change, by doing so I never have any problems per se.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMWay back when I first started HRT my first endo was over an hour's drive away in a different metro area, as that is the endo my therapist recommended... She was rather conservative in her treatment so when after I was post-op I was still not getting much results I felt I had to make a change.. So I found another endo through the 'community" in another state (over 2 hour drive) that was willing to be more aggressive.
As mentioned above I only have ever had two endocrinologists, both who knew about our medical conditions, it did not matter where they were located, I would have made the effort to see them regardless.
I never worried about my breast size, or about them, except when they first started to grow I noticed them now and again, until I forgot my inserts one day. I virtually had no breasts maybe 18A and after that I never worried about my breasts and after 35 years my breast size is now 18C or maybe 20C.
My initial drug regime was depo provera and premarin and maybe because of the initial hormones and time I have ended up with my breasts being the size that they are now.
I was never given any hormone prescription by my first endocrinologist, he just monitored my levels and gave me a surgery letter to boot. The second endocrinologist, I saw after my surgery and I was not taking my hormone tables regularly and I thought going down the pellet implant was the way to go. However I only had two implants and in the end I reverted back to taking progynova tablets.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMBut over the next 10ish years nothing changed ... and I went off HRT for several years.
For several years even I was not taking hormones. However, the body needs hormones, it does not matter which type it just needs them for a healthy body, bone density being one in the case for us females. So I will take my hormones regularly and they are the only tablets I will take. I do not take tablets unless, they are absolutely necessary.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMBoth of those endos had a lot of experience with TSes as they were from days before there were Endocrine Society Standards of care for T*s and few handled them.
Never heard of the Endocrine Society Standards (ESS) and to me they sound like gate keepers to me. I will admit I'm naive about hormones.
There are only two things that concern me and they are, one my estrogen levels, which I want them to be around the average cycle level of other females second I want to make sure that my testosterone level is below the level of what other female levels are, any higher and I will go berserk, they did enough damage to me for the first 30 years of my life and they will not do any more damage to me if I can help it.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMAbout 5-6 years ago I decided to restart HRT. But in my 60's I was not up do driving over 2 hours each way for a half hour appointment... I had the choice to go to a clinic in the city which was the regional center where the vast majority of T* in the area are referred to these days...
I like driving and I have been doing it most of my life sporadically. That is I travel long distances around Australia.
I will avoid any 'communities' like the plague, even then that is putting it mildly, I value my privacy and once bitten twice shy, was enough for me. Susan's is the only 'community', where I feel safe and secure.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMBut even though it was only about 10 miles away, going into and out of the city the traffic is horrendous, parking hard to come by and expensive... Overall it would mean taking a least half a day of from work for an appointment... and I really did not want to go to a place where all going in would be assumed to be T* (even though, or maybe because, after all these years I'm still readable)...
Again, I like driving and I will avoid any and all 'communities'. One would be readable, the minute you walk through the door regardless of how well you pass. One person in their would say, who is that person, oh they must be one of those.
Quote from: Karen_A on February 11, 2024, 10:17:37 AMSo I decided to go to a very well respected suburban medical center instead, that was MUCH quicker to get to and would have no parking hassles.
I'n finally getting to the point of all this now after giving my background info! )
The endo's I saw/see there (even one who is close to my age) obviously had no experience with long term post-ops by the questions asked and test ordered.. I am pretty sure they were just following the endocrinology society guidelines... And those are geared towards those just transitioning.
In general the approach of endo's from the "old days" was much more individually tailored and based on experience than what I am finding now, and few have experience with long term post-ops ... I think many, from at least my era or before, have tended to find other ways than go to T* centers after awhile to get medical support (My GP would not do it)
- Karen
Do I really need an endocrinologist in my life now? more than likely not. however if the need arises then I will take the time and effort to see one.
Hopefully this new Dr who specializes in our 'medical condition' will become my long term Dr and the information on the ESS that you mentioned I will certainly keep it in mind and ask my new Dr about this society.
She is most certainly intrigued by my history and I know this from a referral letter she wrote to a gynecologist I will be seeing in the near future, who will, I believe will examine me downstairs and other than my boyfriends no one, even me has seen my vagina since my surgery.
Other than a privacy issue in regards to this letter, which I will discuss with the new Dr. The referral letter for the gynecologist was handled by the medical receptionist, In other words I may have been outed indirectly and I'm not happy about it one bit.
Take care and look after yourself
Love and Hugs always
Sarah B