Help me heal
July 14, 2018 6:15 PM   Subscribe

I had GRS 8 months ago and I'm struggling. I need support and kind words and music to help me get past this and learn how to love my body.

My recovery from surgery has been a disaster. My daughter's BF died a month after my surgery and I had to intervene to save her life. This disrupted my dilation schedule and due to the rigors of having to go back to work and drive her to outpatient care for 4 weeks (100 miles round trip every day) my healing vagina suffered drastically and never fully recovered. Ever since then it's been a battle to dilate and heal but...well, it's kind of a mess.

It's at the point now that I can't get a dilator inside me anymore, I feel ashamed and guilty and devastated. There are days where I just want to lay down and never get up again. I need to call Mayo Clinic but I'm so embarrassed and ashamed. I look at the number and feel totally hopeless, flying up to Rochester and spending 800-900 dollars out of pocket to maybe get told there's nothing that can be done just makes me feel even more hopeless.

I need to accept what this is and it just hurts. I feel like I was so close, in the days after surgery I was so excited to finally feel the confirmation inside my body of what was always supposed to be there and have that hope fade away like this, to this pain of healing and prolonged suffering...I'm just beyond words devastated.

I'm trying though. I'm making a 4-song EP right now, 2 of the songs have been posted to Mefi Music and I bought one of those cinema Lightboxes that are all over Europe and put "Love Your Vagina" on it. I've got a counselor, I have a crisis plan in place with her in case I lose my will to live and we've established what I'm supposed to do to keep myself alive.

What I need:

I need your words. I need to be validated and know that I matter. I've gotten a couple of MeMails over the past few days and those have made all the difference. So I could use some MeMails.

I've made a collaborative Spotify Playlist: Transpain Genderheart. If you can put pretty happy sad beautiful music in there that would me too. I've got one song in there already to give you an idea of the kind of music I need.

Also if you've got something with your body that causes you hurt and sadness that you've made peace with please give me your advice and help. I'm desperate for answers.

In closing, I'm not in danger of harming myself, I'm doing the work to keep myself here, I just need a lift over this hump. Any advice, knowing feels, healing music and kind words would mean the world to me. Thank you all and loving hugs offered to anyone who wants or needs them.
posted by nikaspark to Health & Fitness (22 answers total) 5 users marked this as a favorite
I am not in your situation but I have anxieties about medical situations and procedures. In my experience, medical professionals have seen and heard it all. I know you feel alone right now but I highly doubt that you are the first person they have seen in this situation.

A phrase I try to keep in mind during periods of anxiety—“Worry is a misuse of your imagination.”

I know how hard taking steps to get help can be. Can you ask a friend or partner to make the phone call for you?

Please be kind to yourself. You are worth it. You will not feel this way forever. You have good times and good things ahead.

Sending positive thoughts to you and many hugs if you want them.
posted by bookmammal at 6:33 PM on July 14, 2018 [5 favorites]

It sounds like you've been through a lot lately, and I think you can be kind to yourself now, put yourself first. No one talks about it, but self-care is time-consuming and difficult.

Music is a wonderful way to get into a new mindspace. I've been listening to "Lovely Day" by Bill Withers, a classic.

As for a body part causing hurt & sadness, remember that our bodies are constantly self-healing. You'll get through this, it's a setback.

Is it possible for you to call the clinic on Monday, and talk to an advice nurse-type person? I would imagine there's someone associated with the surgical team that you could ask questions of, without being seen.

Good luck! <3
posted by honey badger at 6:48 PM on July 14, 2018 [2 favorites]

I don't know if you remember, friend, but about 6 years ago I was panicked and terrified about going home for Christmas after coming out to my mom. You were one of the people I reached out to for support. I was calmed and comforted knowing that you had my back and were holding space for me if I needed it. You didn't have to do that for me, a stranger from the internet, the friend of a friend, but you did because you are loving, compassionate, brave with strength to spare. Thank you for sharing your strength with me during that turbulent time in my life. Thank you for holding space for me. Thank you for having my back.

I haven't walked in your shoes but I do know what it's like to be ashamed about a medical condition and delay seeking help because of that shame. I want to gently encourage you to pick up the phone and make that call to the Mayo Clinic. The dread of not knowing is the worst. I want you to know that, no matter the outcome, I've got your back. I'm holding space for you if you need it. I have strength and hope enough to share if you want it.

And I'm MeMailing you my number just in case you've lost it.

I love you, friend, and I'm here for you.
posted by blessedlyndie at 6:52 PM on July 14, 2018 [46 favorites]

First, thank you for reaching out and sharing this because I know it's so hard to share something with others when you're feeling worried and ashamed about it yourself. That was brave and absolutely the right thing to do because no one here would think critically about you here for this so I hope you can be more gentle with yourself about it!

For starters, please focus on everything you have been doing "right": you were a fabulous and devoted mom to take such terrific care of your daughter when she needed you. We are so often reminded to put ourselves first but the reality is that it is not always possible and not always the best or right mindset. However, instead of congratulating ourselves for doing the right thing -- or at least accepting things were different than planned, we chastise ourselves for not having done better "self-care" when the best thing was actually neglecting our self-care for a bit. The timing was unfortunate but you did the right thing!

Going to the doctor is absolutely the right thing -- when you call to schedule the appointment, just read your post so they understand where you're coming from. It'll be a good icebreaker. I doubt they'd be judgmental or critical regardless but I absolutely understand your fear. Also, another thing to consider: there's no guarantee that your recovery wouldn't have had other challenges or hurdles even if you had used the dilators "perfectly" as prescribed so please give yourself a break there. It sucks having to spend so much but it's OK because it'll be money well-spent and, of COURSE, they'll be able to do something to help, if simply give you some reassurance and honest feedback.

While there are important physical and physiological components to our genitalia, there are also important psychological elements and they are reflected in how our vagina feels to us and how we feel about our vaginas. For example, if the doctor suggests a low dose of anti-depressants or anti-anxiety medicine to help you feel more comfortable and relaxed, please consider it. I've been living with mine for 35 years now and can tell you that, for all the pleasure it's brought me, there's been a lot of pain and annoyance, too, to say nothing of the incredible anxiety I've had many times over the years! In a way, it's like "welcome to the club" eh? Not all fun and games but ultimately all the good outweighs the bad. :-P Vaginas are amazing and resilient and strong -- and I mean all kinds of vaginas, of course. You are also amazing and resilient and strong, and this will get better!

I'm so glad you had the surgery because you had wanted it for so long. I'm so glad you could have those feelings of hope and joy after surgery because you will have them again!! It will take a bit longer to get there but it's all about the long-game, and this is just the next step in your journey. You are such a kind and generous person with others, both here and clearly outside of Metafilter too, so I hope you can feel that warmth and support in return right now. So much love to you!! It will get better and it will be all worth it. <3
posted by smorgasbord at 7:27 PM on July 14, 2018 [13 favorites]

Your shame and guilt seem really misplaced here. You got off schedule because you were caring for your family. People go into the ER every day because of incredibly embarrassing stuff that definitely can't be explained as a result of caring for their families.

As I tell myself when I am trying to summon courage to explain something awkward to my doc: If those incredibly embarrassed individuals can summon the courage to go to a doc and explain that they have hardware, dining utensils, electronics, food, currency and other objects in areas they were not intended to go, and expect, deserve, and receive medical care, even more so do you - a brave and caring parent - have the right to expect, deserve and receive the best care your provider can offer.

Also: Brene Brown on overcoming shame.
posted by bunderful at 8:17 PM on July 14, 2018 [7 favorites]

You are so strong and so brave and you will make your way past and through this moment, these weeks and months. You have perservered through some really hard stuff and you maybe weren’t sure you’d make it through those moments and weeks and months. But here you are! Stronger than you imagined then! And you’re still stronger than you know.

That phone call might be really hard. And that visit to Mayo might suck. But you will make a plan. And you will do one thing at a time. You might not find the outcome that you want. But you might also find that it’s still available to you. You’ll also find that whatever outcome you achieve is still full of space for joy and growth and fun and of course, there will be new things to be anxious and afraid about. You will use the strength you uncover in these weeks to face those new challenges.

I’d also like to take a moment to thank you for being present for your daughter. You were able to recognize a need, make plans, and follow through. Your ability to do that for someone else while you were struggling highlights that you are a caring and generous person, and that’s corroborated by the member here who fondly recalls your past help.

It’s ok to not be ok. Your community/ies are here and you are not alone. Do you have an online group of ladies who are at similar or later points in transition? If so, they might be able to share stories of difficulties with their surgery recoveries. It might help you to hear that women you trust and admire felt or still feel that their surgeries were failures but that they are no less women for the experience. Your identity can be affirmed in lots of ways, and is affirmed in your efforts to have the body that matches who you are. You are affirmed by existing. I affirm you. You have not failed.

Your body is not something to be ashamed of. I give you permission, for what it’s worth, to feel embarrassed, sad, angry, joyful, fearful, anxious, relieved, or anything else. Feeling all of those things is difficult but refusing to feel them is one of the things that brings us to the shame. You don’t deserve the shame. You have done nothing wrong. You have not failed your body. You have not failed. And you will keep trying, one step at a time. And one day, you will perhaps have a chance to assure a woman that you made it through this tough time that is maybe exactly like her situation, maybe only a little like her situation.
posted by bilabial at 8:22 PM on July 14, 2018 [6 favorites]

I'm struggling to find the shamefulness in not healing optimally because you put someone else's life first (not to mention your own child's). Sometimes people talk about post-pregnancy stretch marks and stitchlines as battle scars; you've got some battle scars of your own and they testify every day to you being a mensch. Respect.
posted by trig at 8:22 PM on July 14, 2018 [16 favorites]

Thank you everyone. This helps a lot.
posted by nikaspark at 8:37 PM on July 14, 2018 [1 favorite]

Sending you lots of hugs and good vibes. I also added a few songs from my own "transition" playlist to yours, each which has gotten a lot of play over my last (first!) year on HRT -- though please feel free to delete any/all if they don't fit with your desired vibe.

I'd also recommend maybe reading this beautiful piece by Akwaeke Emezi on, in their words, "being nonbinary trans + ogbanje + related surgeries," in case it resonates. The following passage in particular resonated with me:

It has been grueling to remake myself each time I learn more about who or what I am — to take the steps that such remaking requires, to bear the costs. Sometimes, those costs are worn on your heart, like when the people you love no longer have space in their worldview for you. Other times, it’s the body that bears them, in markings and modifications. By now, I’ve come to think of mutilation as a shift from wrongness to alignment, and of scars as a form of adornment that celebrates this shift. The keloids on my chest and the small lines spilling out of my navel function as reminders — that even when it meant stepping out of one reality to be swallowed by another, I kept choosing to move toward myself.

Lastly, I'm not sure if you spend any time in other trans online communities, but I think you'd also get meaningful responses if you posted in reddit's r/asktransgender and/or r/mtf. Just something to consider if you need more support. Again, sending lots of love!
posted by kylej at 8:49 PM on July 14, 2018 [6 favorites]

Please reframe your role in your story: you're the hero.
posted by amtho at 8:57 PM on July 14, 2018 [17 favorites]

There are women who have been through what you're going through. You're not alone. You made the right decision. You saved your daughter. Now, as hard as it is, call your doctors. Radical self care. Let them help you. Sending you every good thing.
posted by quince at 9:22 PM on July 14, 2018 [2 favorites]

Dilators come in lots of sizes and materials. You might want to get a different one after discussing with your healthcare provider. You’ve done some amazing things over the last year, for yourself and your daughter, and she’s been your focus. Now it’s your turn! Give yourself the same love and attention you’ve given her. Treat yourself to an appointment to get back on track where you want to be. I think you add Pink’s Perfect to your playlist, too. To make it simple: if you don’t call the doctor, will you regret it more a year from now than if you just say whatever, I’m going to make that appointment and let the chips fall where they may? I think it won’t be a big deal, you’re not the first person to have a life crisis get in the way and have to readjust plans. And a year from now you’ll be happy you called and got things rolling again. Great difficulty can mean great reward. You’re doing an amazing job!
posted by OneSmartMonkey at 10:12 PM on July 14, 2018

Many moms will tell you that having kids messes with your vagina, so you’re on schedule there. I recognized your nick from a bunch of wonderful, helpful comments I’ve seen recently and I want you to know I’m rooting for you and want you to take care of yourself. My mom put herself before me any time it mattered so your fierceness in helping your daughter is the stuff of fairytales for me, and there is always a reward in fairy tales, you get to live happily ever after; make the call.
posted by Iteki at 11:28 PM on July 14, 2018 [10 favorites]

I have put off health things so many times because of shame and fear. I'm literally doing it right now, and I've been trying to talk myself into making the goddamn appointment already (one I've made and cancelled 4 times since January.) You do not have to feel shame because you dread something hard. You are a badass who managed to support your daughter through a terrible time. Life got in your way, that's all. Let's both make these dang phone calls already. I added a bunch of my life is sad happy beautiful music to your Spotify list taken from my (many, many) playlists of this type. You add a lot to this community and are so kind to others, be kind to yourself, too. Thinking of you and be well.
posted by fairlynearlyready at 11:53 PM on July 14, 2018 [4 favorites]

You are such a luminous, optimistic presence in this community - and it sounds like you are just the same in 'real' life to your family. I admire your courage in even posting this question so much, and I just want to validate the shit out of you.

If you can, I'd urge you to reframe the narrative around this: it sounds like you've been on this long journey - started long before your GRS - and you thought you had reached your destination. I can sympathise, it's so tiring doing something hard and feeling like you can finally let your burden go - only to find the journey hasn't finished, the burden is still there. However: zoom the camera out a little.

1) You saved your daughter's life, and you did some A-grade fucking parenting right there, I'm sure. As a parent, being there for your kids is so, so important. I'd be proud to have you as my mum.

2) Think about all the progress you have made, externally and internally. The last 7 months have been super tough. Where were you 2 years ago? 5? 10? Think about everything you've learned in that time, think about how far you've come with all that progress. Think about all you know now, all you've learnt about yourself, your courage, your resilience, self-expression.

3) I have a chronic medical condition, and my mother was a medical receptionist, so I've spent an inordinate amount of time hanging around dr's offices. Let me tell you something I've observed in medicine: Full compliance with medical instructions is the exception, not the rule. Virtually nobody follows their medical advice fully - for a vast panoply of reasons, most far more trivial than yours. And nobody, at all, reaches out to a medical professional as soon as they could, or should. Everyone waits. You're beating yourself up about this thing - like you've let yourself down, or been a traitor to your journey or something. But what happened, I'm telling you, is something that happens with virtually everybody who has medical instructions to follow, and everyone who needs to follow up with a Dr, especially on a very personal issue like this. Heck, I didn't see my doctor for an infected burn on my arm for over 3 weeks - and that's got way less emotion attached to it! I have not followed recommendations with my stomach medication many many times.

4) On feelings of betraying your journey, letting yourself down etc. I have not experienced what you have, so just disregard this if it's not working for you: But from what you've said on this community, I feel like at least a part of your GRS and everything else, has been about being your true self, right? About like, letting go of expectations that society and others have put on you? Perhaps it's been a journey with a lot of shame and suffering, maybe even self-loathing? And part of this journey is to step beyond those feelings of shame, to release yourself, to stop feeling shame or a sense that you're 'wrong' or whatever?

So please, please, don't let a slower pace, or a speed bump derail you. You don't need to feel that shame, and you don't need to wait for your vagina to be perfect to stop feeling shame. Stop feeling it right now. You are human, you are may be imperfect in action or form or thought. Buddy we are all imperfect, on all of those levels - don't feel ashamed about it, it's part of being human. And imperfection or no we still all deserve love, respect, happiness, and not to feel ashamed. You may be imperfect, but you are brave, generous, kind, lovable, loved.

All my best thoughts and wishes with you.
posted by smoke at 12:24 AM on July 15, 2018 [24 favorites]

Smoke, thank you so so so much.
posted by nikaspark at 2:15 AM on July 15, 2018

Also thank you for the music everyone, and Breathe Me by Sia omg yes who else shamelessly cried like a baby with all their friends watching the series finale of six feet under in 2005? Because omg that song is forever seared into my mind as a beautiful catharsis. Thank you for putting it in the playlist.
posted by nikaspark at 9:13 AM on July 15, 2018 [2 favorites]

I just want to say that your post really touched me. I'm sorry you're having a hard time. The pain, anxiety and uncertainty you describe certainly resonate with me as a woman. I'm cisgender, so of course I've had a very different journey to becoming a woman, and as a woman, but this " if you've got something with your body that causes you hurt and sadness that you've made peace with please give me your advice and help" brought tears to my eyes because there have been many times.

My only advice is just to give yourself time. But I just want to put a blanket around your shoulders, give you a hug, hand you a mug of tea and say "Welcome." We are women, we know, and we care.
posted by ewok_academy at 10:23 AM on July 15, 2018 [2 favorites]

I agree with others that how you got here reflects characteristics you should be proud of: you're doing brave things for yourself, supportive and fiercely loving things for others. There's no need to feel guilty or ashamed for where you are.

The thing that is helping me most with coming to a better relationship is slowly softening my relationship to it. If I can be just a little less hateful to myself, or less hard or mean, about how it doesn't look or work the way I wish it did, I can come to see it -- and IT is also ME -- in a more nuanced and gentler way.

It has also really helped me to work to divorce moralizing from how I think about my own treatment of myself. I try to remove moral frames (e.g., "I've been good all day, so I'm going to treat myself to dessert.") from how I think about myself and other people's self-care/maintenance.

Trusting other people to make the right choice for themselves has helped me do the same for myself. I think you could do the same: you've made good choices for yourself so far, given the balance of all the factors. I don't see any reason that won't continue to be true.
posted by spindrifter at 11:53 AM on July 15, 2018 [2 favorites]

One of the things that I realized recently has helped me a bunch with feeling better about and being kinder to my unruly trans bod has been reading writing about disability, by people who have been thinking longer than I have about what it means to them to have a body that doesn't always do what they want it to, that experiences pain, that stigmatizes them in people's eyes, etc.. Two of my favourites are Eli Clare's Exile and Pride, and Kayleigh Trace's Hot, Wet, and Shaking. (This isn't at all to say the experience of transness and the experience of disability are the same thing, or that people can't be both trans and disabled, although I've definitely had nice times exchanging gripes about washroom access with friends who use mobility devices).

I don't have a Spotify account, but a couple of trans artists who give me a lot of life are KINKY, Vivek Shraya, Aye Nako, and TANKINI.

And, I am one more internet stranger who is sending you warmth and who is confident that you are strong as fuck and who wishes people didn't have to be so strong and deal with so much.
posted by ITheCosmos at 1:20 PM on July 15, 2018 [3 favorites]

Hi. I saw this question a day or two ago, and felt like talking to you about this would be over my head. I haven't lived the experience of grs (yet), and I'm not sure I'm any kind of expert on handling such big, complicated feelings.

But let me join the chorus of saying that you're a deeply empathetic, good person. And you were a great caretaker to your mourning daughter, and now it's time to be good to yourself. That includes forgiving yourself and knowing that you deserve to get this taken care of as best medicine can accommodate you.

I remember when I posted my big rambling "mefi am I trans or just a male feminist?" question, and you took me seriously and made me feel like I had a real option to transition, and that I wasn't weird to want to transition even if I couldn't say I knew I was the wrong gender. I'm now 20 months into hrt. I went from an awkward manchild working a part time low wage job in his mom's house to a software engineer living on my own. I just had my grs consultation myself today. It's amazing. You helped me get here.

And you answered my silly question about minmaxing my health insurance, when I'm a gainfully employeed person who could easily just borrow or save, and you're going through some real troubles.

You're incredible. Be that way towards yourself.
posted by ikea_femme at 5:23 PM on July 16, 2018 [2 favorites]

Shame is such a liar, isn't it? You did good. You did so, so good. And there's no shame in having been in an impossible situation, or in being devastated at the long-term effects of that situation, or even in being afraid of what Mayo might be able to tell you. You've been such a caring and affirming presence in every community that you and I have shared, and gods, I hope we're managing to pay some of that back right now.

On a practical level re: acceptance, I'm with spindrifter on sort of forcing myself to look at my crappy brain, etc. as part of me, and therefore worth trying to treat more gently. Sometimes it works, and that's enough for me.
posted by haltingproblemsolved at 8:43 PM on July 16, 2018 [1 favorite]

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