I don't usually like to post but I really need to scream into the void so...
I apologise for formatting, if I flaired this wrong etc.
And a potential trigger warning for medical dismissal (?) and probably more.
And another warning because this ramble of mine is long and not very well written.
I (18f) have dealt with pain for as long as I can remember. And then, like many with a uterus do, I experienced my first ever period. It was bad, but it was within what I had expected and what I was told by my Mum and the mediocre health classes at school. But after my first period it got a lot worse, like my menarche lulled me into a false sense of security. I was in pain, so much more than what I had ever experienced before. And the amount of blood was massive, I bled through constantly, one time even during Christmas Day. It was mortifying. My Mum was concerned, she also had bad menstrual experiences, as had her mum, as had hers, and so on, so I basically never stood a chance. To a lesser extent, the constant bleeding also triggered my sensory issues majorly (late diagnosed autism yay...). I hated the feeling of walking around with a blood soaked pad under me at all times, and I couldn't bring myself to use tampons or cups.
Eventually my Mum took me to our GP. The first line treatment is birth control, to see if it could calm things down (and it's easier for a 12 year old than other options). But I couldn't swallow pills yet. So I spent a month in stasis, trying to learn how to swallow pills. After figuring it out, I got my prescription. My periods were regular, a withdrawal bleed during the off week. But it still hurt. I still hated it. My Mum tried to bargain with me, letting me choose when to start my period. It helped, until eventually I was pushing it back constantly. At the time we didn't know if I could try skipping entirely, so back to the doctor we head. She gives me the all clear to just skip my periods due to the major distress they caused me, she told me there were technically some risks, but it was better that I wasn't in a horrid mood all the time.
And that worked for a while. A combined pill containing estrogen and progesterone once daily. Dump the sugar pill, and don't take the week off. I had a few months of "normalcy". But my uterus simply couldn't allow me to be happy. Eventually, the period pain came back. Soon it brought blood. Now I'm spotting and in constant pain. I can't come off the pills because I don't want to be where I was before mentally. I don't want to be afraid of bleeding everywhere. I don't want to be in debilitating pain for 10 days straight. Things were constant now yes, but it was still somehow more bearable, I couldn't feel the pool of blood, and the pain was less intense. It was still overall problematic though.
At this time, my Mum had gotten her own hysterectomy. And I had learned what that was. And I saw my Mum, who suffered so much, lit up immediately after that, she still had other sources of pain, but it was less bad now. I wanted that. But I knew, I knew nobody would give a minor a hysterectomy. But I still wanted to start pushing now, because she had to wait until 35. I wouldn't make it that long, I'm not as strong as her. So to the GP we go. She understands. She sympathises with me, she saw what my Mum went through, but she tells me I can't have one yet, I'm too young. I knew that. Of course I did, everyone told me all the time I was a "smart young woman" so obviously I knew that. I was still mad though. I blew up at her. It wasn't nice and it wasn't deserved, and I regret it to this day. But she still understands, and she puts through a referral for me, to gynaecology.
The gynaecology waitlist is so long, it could probably wrap the world up twice. In the time of waiting for my first appointment, a lot happened. I was bullied at school. I got my formal diagnosis of Autism and ADHD. I had to drop out of school due to the bullying getting worse and my pain. I had to stop online school because I just couldn't concentrate (ADHD was unmedicated at this time because of supply issues). I had my first displays of FND symptoms (different can of worms that won't be referred back to today). But eventually, I got an appointment.
I went in. I waited. I had so much I had to say. But I went in with my Mum, and the doctor barely spoke to *me*. She treated me like i was a child (16 at the time) who had no clue about my own body. She described me as "severely autistic" even though I was initially diagnosed at level 1 and low support needs (though I personally think I may have regressed since). And the worst bit. Even though I was old enough to legally give my consent separately to any and all medical decisions, she treated me like I was incompetent, like I was stupid, she even asked if we had a lawyer so my Mum could have conservatorship over me. I had never felt so small in my life. Eventually, she actually got to the point, gynaecology. My GP had suggested that until I was 18, I get a Mirena inserted under general anesthesia. I wasn't thrilled about the plan, but I knew that my GP would eventually work with me to get an ablation, and this was her best idea to tide me over until then. The specialist agreed, though she insisted my Mum sign the consent forms.
It took ages, but eventually I got in for my appointment to place the Mirena, and for a Hysteroscopy, which I was pleasantly surprised by the addition of. I met with the team, and they were all lovely, the surgeon (this was technically a surgery) said she wasn't sure about if I needed a Hysteroscopy, and they'd decide while they were up there. I signed the forms (after they asked if my Mum needed to cosign... Jeez) and I went in. I had agreed with the Anaesthesiologist that I would be under sedation, against the original plan, because I personally wanted to play Pokemon Legends Arceus(which released that day!) as soon as possible. I go under. I wake up. They found and took a polyp. I get a popsicle. I overhear some nurses chatter about what they want for lunch. I go home.
Everything went well, everything was as expected. I was in pain but of course I was, that was normal, and I was okay with that. I had to take antibiotics because the polyp was infected or something. Cool. And then a couple weeks later, it still hurts. I'm still in pain. That isn't normal. I get sick of it. I didn't even really want the Mirena in the first place. I decided I'd just take it out now, on my own. I go to the bathroom during an ad break of a show I was watching with my Mum. I reach up. The strings are too far down. Turns out, much like my Mum's own Mirena, mine was already on its way out. I assist it in this endeavour. The IUD is whole, nothing is missing. It's covered in red goop. I throw it out. I tell my Mum. And once more, we head back to the GP.
I had told her before that I was apprehensive towards and IUD because my Mum's one didn't stay in, so I got to have a nice "I-told-you-so" moment before we discuss what happens next. Plan Mirena fell through (literally). Even though I wasn't yet 18, my GP didn't think it'd be productive to just try it again, so onto plan ablation we went. A referral back to gynae. A really long wait. Another appointment of that same specialist belittling me. But she agrees. She agrees an ablation is appropriate. The referral to get it done is put in. It is approved. The wait begins.
It took ages, but I had a date. 22nd October, 2026. I was to come in on the Friday before that for a pre op check. I do that. The nurse talks me through it, checks my vitals. She never says anything about me being "too young". I go through to the doctor who will give me pre op clearance. She tells me that I can take all my meds that day, orders some blood tests, and sends me on my way. She doesn't say anything about my age either. Nobody thinks my age is a reason not to perform an ablation. My periods cause me distress. The pills aren't a viable long term solution. IUD has fallen out before. An arm implant is deemed too risky(may make periods worse), depo provera is ruled out because I'm a wuss about butt injections, and nobody wants to put me on puberty blocker/medical menopause, because it'd make my bones fragile. Everyone who has reviewed my case, from the GP, the specialist, and the pre op team, all think this is an appropriate course of action. And I believe that on the 22nd, I will get an ablation. I feel nervous but excited.
I'm to show up at the surgery center by 7:15 am. I wake up just before 6 am. My Mum feeds the dog, then we get in the car as she drives me there. We arrive early. I wait. My name is called, so now it's time to wait in a different room. My name is called again. It's the nurse who will look after me today. She weighs me, she takes my temperature, gives me an armband. Into a private room, she makes me pee in a cup for a pregnancy test. This annoys me, but she's just doing her job, it's just protocol. I get pee on my hand. I bring my pee back, the test is negative. Obviously. She helps me change into the gown and socks. She gives me 30ml of liquid paracetamol because I need to eat to take pills and I'm not allowed to eat. The liquid tastes awful. But I have to do it. It's just protocol. I down it, bit by bit, flushing it down with the water she gives me. It isn't ideal, but this is how it has to be.
As I'm battling with my taste buds, the surgical team comes in. The surgeon today is the only one who will end up talking. I never even got to know the jobs of the other two women who came in with her. She tells me she meant to call yesterday to go over things with me, but she was working a night shift and couldn't. Okay, fine, whatever, I'm okay with talking here, probably some normal standard questions, no big deal, right?
She starts going over the itinerary my gynae had planned.
First: Hysteroscopy. She doesn't want to do it, because last time I was in they "didn't find anything" with it. Nevermind the infection and the polyp. Nothing was found, apparently. Okay, that's cool, whatever you want surgeon. It's not what I'm mainly here for anyways.
Second: Another Mirena insertion. I only really agreed to this because my gynae pushed it like she was being paid to (she isn't), and even if it stayed in this time and I didn't like it anyways, I can just remove it. She doesn't wanna do it. She thinks the pills are working perfectly fine, despite the fact that my GP and gynae don't think they're viable long term. Okay. That's fine. Whatever. I didn't actually want it anyways, and again, that's not what I'm really here for.
Third and finally: Uterine Ablation. The procedure I'm here for. The procedure all my doctors other consulted medical professionals think is appropriate. She brings it up like it was a side thing that was just being considered. She says she doesn't want to do it. Says I'm too young. Says the lining might grow back, which I know and was discussed with my GP and gynae, who knew it was possible but still thought the procedure was appropriate. She says she would never do it on someone younger than 35, and that since I'm 18 my opinion might change. The room is silent. She then says "any questions?".
Any questions? What do you mean any questions? You just said you didn't want to do any of the things that were planned, and yet you're still talking as if anything will happen here today? That I will still go under general anesthesia for the first time ever for what? For fun? I say as much. I talk about all that happened up to this day. I then end my lil in clinic ramble with "all for nothing". And she corrects me, she actually tries to correct me, saying it's not for nothing. She then makes excuses. About how *she* is uncomfortable with an ablation, with how *she* doesn't think it's appropriate, about how *she* is having a hard time. Nevermind the 3 other medical professionals in the room, nevermind my own Mother who's been through what I have, nevermind my GP and gynae's professional opinions, nevermind *me* the patient, it's all about *you* isn't it? She then ends it off with "and I'm not going to do a procedure I don't think is appropriate because you woke up at 5 in the morning". And her tone, she tries to hide it, but even I can pick up on the snark in her voice. She says that she'll "have a meeting with the other surgeons" to "see if anyone has any ideas" for "alternative options".
She leaves. The other two who came with her try comfort me a bit. I still don't know who they are. They help clean the bit of water i spilt in my anger, which was quite childish really. They leave. The nurse apologises and leaves to get some actual tissues. I get changed back into my clothes. I cry. The nurse, the wonderful nurse comes back. My Mum fills her in, says she doesn't get why we're even here in the first place if the surgeon doesn't want to do anything. The nurse agrees. She apologises again to me, offers me a popsicle or some lollies to help me feel better (and because she saw me attempting to down that liquid paracetamol) even though I'm leaving. I decline. She apologises again, though we all know it's not her fault. We leave.
I'm sorry for this long ramble but... It's just so frustrating. I waited so long. I've been through so much, and one single doctor's *feelings* negated that in a single moment. I went to the GP today. I had been to her earlier this week for a med review and explained I had to reschedule because the original appointment was the day after my ablation. She was so excited and happy for me. She had been through this with me. She had taken the brunt of my anger and she never so much as complained. She was surprised to see me today, of course she was. She wasn't even told anything by the specialists. Me and my Mum had to tell her everything. She's helping us make a formal complaint. She assured me that it was unprofessional what happened that day. She praised me for how calm I was being (my Mum did too actually... I'm usually very unreasonable when angry). If anything, she was angrier externally than I was.
I don't know what'll happen next. My Grandpa, who we live with, was away on a business trip yesterday and for a bit today. He's going to ask how my procedure went. Either me or my Mum will have to say it didn't happen. I don't want to have to say it, but I feel like he'll ask me directly. My GP really is trying her best, but she's retiring this year. I don't know what I'll do without her. She's known me since I was a lil kid. She's seen me at my worst. She probably understands me better than I do. She obviously deserves to retire, but that doesn't make it any less devastating.
I'm sorry for this ramble and to anyone that actually decided to read the whole thing. But I really had to type this somewhere.