Hello,
This is my first time posting anything on this forum, so I hope this is in the right place and all. I've never shared my transition online before in this way, but what I'm going through right now is an emergency and since I can't speak to my doctor during the weekend, I just needed to reach out to anybody who might know what's happening to me. Apologies if any of this is TMI, but right now, I'm too desperate to care. For the last two days, living has become unbearable.
I'm a 19 year old trans woman in the UK. I have been on estradiol valerate for 8 months thanks to a private doctor who helped me get them earlier, but due to massive delays when I got on the NHS, I didn't start on a testosterone blocker as needed until three weeks ago. This is where things were supposed to finally get better and for a moment I almost believed they would. As per NHS GIC protocol, I am on a GnRH analog 3 monthly injection to block my testosterone, specifically Prostap 3 DCS <dosage removed>, more commonly known as Lupron I believe in some markets with active ingredient Leuprorelin acetate. I was waiting for this for so long, months and months where I could see that the oestrogen alone was failing to change my body in all the right ways, so when the day came I was much relieved. However, somehow, things have managed to find a way to get worse again. I understand that, due to the nature of GnRH analogues, there is a spike in testosterone production initially after it is administered which, as I have read, should have subsided within the first two weeks. To avoid any effects of this, I was prescribed cyproterone acetate for two weeks - I was told that after this point, testosterone should be suppressed. Within the first few days, I may have noticed a slight increasing in sex drive, but after about day four, the cyproterone had kicked in and it diminished, though not completely. Though I didn't like the depressive side effect of the cyproterone, is did seem to work. I finished my course of them a week ago, so it was three weeks yesterday since I had the GnRH analogue administered. Now, I have checked everything and know that the drug I was given is the right one for the job and that it was administered in an appropriate way (in the arm) according to the medical literature I have read associated with it. However, the fear that is dominating my every waking moment right now, is that somehow, something has gone terribly wrong. Since Thursday and only since Thursday, I have noticed that my sex drive seems wildly increased, as well as altered from how I ever remember it feeling pre-transition. It's constant - nothing I can do will make it go away. It's a feeling I've never had before, where any (extremely dysphoric) *efforts* to satisfy it do not last for more than a couple of hours. As somebody for whom the male sex drive has always been the most crippling area of dysphoria, these last few days have been amongst the worst of my life. I feel like I'm in hell. I will say though, it doesn't feel like just normal arousal - it's not your textbook testosterone sex drive. I have not been having things you might expect, like spontaneous erections (although things do still function as they did pre-transition), or especially sexual thoughts, increased response to what would usually be sexual stimuli or any type of sexual attraction to other people - its more this constant anxiety, this tenseness that makes it impossible to relax or to focus on anything, as well as what feels like elevated heart rate. As I've said, I've read countless things online, but nowhere can I find anything that says this should happen at this point in my treatment and I can't find anyone who has experienced this. In fact, all the lists of side effects I've been able to find say that sex drive should plummet as well as that not only should the flare be over within 2 weeks, but that by 3 weeks testosterone should be at castrate levels. I am not on any other medication currently, save for my estradiol. I intend to see my doctor as soon as possible, as well as to contact GIC, but I cannot do so until Monday, which is why I felt I had to post this here. I have never been suicidal before, but this has brought me to rock bottom, the lowest place I've ever been in my life. The dysphoria is crippling and inescapable and it feels like it's destroying any sense of my female identity. As I have said, from everything I understand, everything has been administered correctly which is why I can't understand how this is happening. What's even weirder is that I have been, in fact, starting to notice changes in my body which indicate reduced testosterone levels over this past week - softer skin, lighter body hair, reduced body odour - which were things that I never noticed when I was on estradiol alone. The suddenness with which this one thing has sprung back is what baffles me so much. I plan on having a blood test as soon as possible. I have considered calling 111, but this problem is way too specific and complicated - instead, I thought it was a better bet to ask other transwomen.
Now, there is something else. I'm not sure whether this is important or not, but it might be. 11 days after the injection and so three days before finishing on cyproterone, I had my facial feminisation surgery under general anaesthetic. For 5 days following, I was on a course of antibiotics and an anti-inflammatary, as well as Tramadol and paracetamol. I am now off all those drugs apart from the paracetamol. Because my surgery was shorter than 3 hours, I did not have to go off HRT like some transwomen do for surgery. I asked my surgeon's team and told them all of the hormones I was on and they assured me that there were no issues being on those hormones whilst having and recovering from surgery. I don't know whether they were wrong and something I was on did somehow cause the testosterone spike to become delayed, but I cannot find anything online that says the drugs I was taking affect the GnRH analogue. That's just an extra bit of information.
Anyway, this post is long enough now. I just wanted to include as much detail as possible, since my situation is not one that seems normal. I would appreciate any (supportive) response from anyone who has experience - maybe not even this experience, but certainly experience being on Lupron. I know what I really need is medical help and I'm not expecting to find that here, but since I can't get that right now, I just need something. I am desperate.
Thank you x
<Dosage removed by moderator>
Hi, DarkButterfly!
Welcome to Susan's Place.
I am sorry to hear that you are having such problems with your HRT. Unfortunately, I do not have the knowledge to answer your medical questions. Hopefully, someone else can. Your best bet, of course, is to ask your doctor.
Please feel free to stop by the Introductions forum (https://www.susans.org/forums/index.php/board,8.0.html) to tell the members about yourself. Here is some information that we like to share with new members:
Things that you should read
Site Terms of Service & Rules to Live By (https://www.susans.org/forums/index.php/topic,2.0.html) | Standard Terms & Definitions (https://www.susans.org/forums/index.php/topic,54369.0.html) | Post Ranks (including when you can upload an avatar) (https://www.susans.org/forums/index.php/topic,114.0.html.) |
Reputation rules (https://www.susans.org/forums/index.php/topic,18960.0.html) | Cautionary Note (https://www.susans.org/forums/index.php/topic,82221.0.html) | Photo, avatars, & signature images policy (https://www.susans.org/forums/index.php/topic,59974.msg383866.html#msg383866) |
Hi hun, hugs.
Really the best thing you can do is sit tight, get your T and E levels measured ASAP (your GP can arrange this). The two-week T flare has been kown to last up to four weeks in rare cases. It Also takes some time for the body to find it's new hormonal ballance.
Try to keep yourself busy, distracted and remind yourself that this is a bump on a greater journey, that you CAN get past. X
Sent from my MI 5s using Tapatalk
Hi
Not that it answers all of your questions but it took until my second injection for it to really "work" and even then my experiences are in some way different to others I've spoken to. I had my blood tests and I'm in the normal female ranges despite being concerned that the injections weren't working.
Em x
Different people respond differently to different drugs. It sounds like the Andocur is working for you. Except for the depression which could possibly be treated with SSRI's or could even out in the long run. There's also Spiro if neither of those two is to your liking. Also, there is orchiectomy.
Don't stress. You have options.
Quote from: Janes Groove on September 08, 2018, 02:01:03 PM
Different people respond differently to different drugs. It sounds like the Andocur is working for you. Except for the depression which could possibly be treated with SSRI's or could even out in the long run. There's also Spiro if neither of those two is to your liking. Also, there is orchiectomy.
Don't stress. You have options.
Depression as s side effect of cyproterone acetate should result in dose change, not SSRI's - they are not actually useful here due to the action of CPA.
Hi,
Thank you to everyone who has responded! You've put my mind at rest a little and I am just trying to stay distracted. I want to say tentatively that I feel a little better now than I did earlier, but I'm going to see how I feel in the morning before I jump to any conclusions. Right now, I still plan on speaking to my GP. That's interesting about the flare lasting up to four weeks - I was not advised of this. Still, I'm not sure that is what I am experiencing, since other things do feel different. Who knows, though. In terms of options, from what GIC have told me, Spiro doesn't seem to be prescribed by them - don't know why, from what I hear it would be better for me than cypro, which they do use here and which causes depression. Anyway, I was never given any choice as to what blocker I was put on and, from my experience, GIC are so distant from their patients that I don't imagine being able to get through to anyone there who has any say in anything any time soon. I just hope this starts working as it should. Yes, everyone does respond to drugs differently, so maybe what I'm experiencing is just because my body is in flux from all the hormones. I don't know. Still, if this continues, I'm speaking to my GP. Even if it doesn't, I still will, because this is too traumatic to risk happening again for me. Orchiectomy is something I've thought about more and more and let me tell you, it's more appealing than ever right now.
Anyway, at least I got through the day - there was a moment when I thought I wouldn't, so perhaps things have improved a little. I'll check back tomorrow.
Thanks again x
Was the anti-inflammatory from your surgery steroidal? Those can play hell with moods, especially anxiety, and they can take a while to settle out of your system.
Quote from: Natsuki Kuga on September 08, 2018, 09:31:20 PM
Was the anti-inflammatory from your surgery steroidal? Those can play hell with moods, especially anxiety, and they can take a while to settle out of your system.
Actually, yes - it was Dexamethasone. It is true that my anxiety has been absolutely crippling recently, so maybe that has been affecting me. Thank you! x
So...update time.
I don't feel like I did over the weekend, that's for sure. In fact, on Sunday evening and into Monday, the feelings from hell had gone completely. It was then that I spoke to my GP, thinking this was behind me, however, we arranged a blood test anyway. He didn't have any specific answers for me. However, of course, the feelings then came back Monday afternoon in a somewhat watered down form, but still there. On Tuesday I had my blood test, continued to feel bad, crashed in the evening and then woke up this morning to my blood results. Do you know what my testosterone level is? Just in case you're not familiar with levels, it should be between 0.5 - 3.7 nmol/L to be in the female range. Before HRT, my level was around 27nmol/L. However, now, my level is 1.06nmol/L. Are you kidding? It's so low. I feel like I should be happy about this, but instead it just baffles me more. HOW can I be feeling what I'm feeling with almost no testosterone in my body? It doesn't make sense! The only thing I can think of is that what I think I'm feeling isn't actually what I'm feeling. My anxiety has been so bad recently that it has caused my OCD to come back. Maybe I'm just really anxious. I don't know. Whatever way you slice it, this is still debilitating. I feel like I've lost myself. I'm dealing with self-loathing more than ever before. Maybe I need to talk to a therapist or something? I wish I would have heard before starting HRT how hard it can be. Every experience I've heard has been so positive, but mine had been an absolute ordeal from start to finish - you don't even know the whole story.