u/lunabuddy

Been 2 birthdays since I have been trying and failing, I just posted to the small group chat because I didn't want to leave her out but let's decline an invitation with a birth announcement, cool cool

Obviously my skin routine is working even if the IVF is not. My AMH is low and I'm on my 3rd embryo transfer, had a horrible MMC this year with complications that dragged out for months of infections, feel like shit, but at least I can pass for young enough to have plenty of time for kids later :/

Hello,

I work in a school library and I just had a professional development session run by another library staff member. So she had this whole slide show about autism and pathologic demand avoidance. One thing she stated is that because PDA isn't officially a diagnosis we won't know if children have it or not so it is best practice to always use declarative statements and language when talking to students that have or are suspected to have autism. For example, instead of saying "Don't run in the library" when someone is running, just say "walking" or "we walk in the library". And starting with like "I'm wondering if it's it's time to pack up or "i'm thinking it's..." Basically nothing that is or could be perceived as a request to do or not do something. Just indirectly imply what they should do to reduce anxiety about being told what to do.

I'm just wondering if this is really something all autistic young people would be prefer to be spoken like? I'm talking like...10-16 year olds, but also younger children. I've found that in the past students with autism have responded to my pretty clear and blunt way of speaking, setting rules and boundaries, but now I'm just wondering if I've been causing them anxiety this whole time and whether I should modify how I speak to them?

Anyone have any thoughts?

In terms of her attempts to "help" it's not the worst but I didn't even know how to respond. She has not seen M3gan, obviously

I thought people were walking around with full on white discharge and I was the weird one this whole time

Hopefully not a common experience but 3 different hospital stays due to a MMC leading to an infection, leading to 2 courses of antibiotics leading to constant GI upset they tried to tell me was "trauma/grief induced IBS", I finally got a positive test for something and it's c diff. toxins trying to destroy my colon. I'm tired of this.

So I've been going through a few other medical issues on top of endo of the past few months but I've also got an app that puts all my blood test results from the past few years together but one thing that seems consistently out of the normal range is my c-reactive protein. It's been brought up by various doctors because it basically at the level (15-20) that suggests a viral or bacterial infection, all the time. So doctors have kind of just assumed I had a cold or something when they brought it up to me. Or that it could be related to endo, somehow. So am I really just dealing with heightened inflammation, all the time? Is this what everyone else with endo experiences? It seems like that would take a huge toll on my body, and currently I can't take any NSAIDs due to stomach issues...so, wtf

TW: Miscarriage

So I have stage IV endo and I have had most of it removed, with some painful bowel endometriosis they couldn't without causing incontinence. The combination of surgery and a mirena left me with what I'd describe as a manageable chronic pain condition that half the month caused me no pain at all.

However, been trying to get pregnant and not on hormonal BC. Recently had miscarriage that lead to 2 surgeries and an infection. And 2 endo pain flares because the infection didn't clear first round of antibiotics. 2 different hospitals, 1 being general emergency with a gynae ward, the second a dedicated women's hospital. I notice that the only effective strategy and lessening my suffering and reducing the length of the flair seems to be the opposite of how doctors treat chronic pain, even though endo is a chronic pain condition. 1 ineffective and 1 ineffective.

1st hospital's approach: Engaged pain management and gynae teams twice a day. Getting pain to basically 2 out of 10 as soon as possible, start with the strongest painkiller you can to do this, don't fuck around with thinking paracetamol will work by itself if you try it for four hours to 6 hours.

Keep pain under control for at least 24 hours, by any means necessary. Try to reduce pain relief to tablet endone, and and use something like buscopan to reduce muscle spasms. If still not working, try a low dose ketamine infusion overnight. After this I was able to go home within 2 days of a the flair starting, with just paracetamol and ibuprofen, able to rest and recover, 1/10 pain on leaving.

Not working: Wait for patients pain to gradually get worse until they are begging for more pain relief in the middle of the night for 4 hours, not sleeping until a doctor finally picks up the phone and orders minimum endone and diazepam without seeing patient at 3:30am, leading to 3 hours of sleep two nights in a row. Refuse to try any form of injectable, including ketamine infusion (because not enough evidence it works, even though worked previously) or in my case even IV antibiotics because "pain is not an emergency". Don't give them anything they can't take at home after leaving hospital, because they have chronic pain. Result: 5 days in hospital, sent home with 3-4/10 pain, short term opiate prescription and accompanying constipation, muscles all over body sore from tensing with pain, feeling terrified of another flare happening and honestly wanting to just try weed and vodka next time unless I'm actively dying.

I'm not a doctor AND I know opiates don't work in the long term for chronic pain. But for godsake, for all we know about neural pathways and heighted sensitivity to pain the more pain you experience in an area, why do doctors not even try to deal with women's acute pain differently? IT'S DIFFERENT. It causes all sorts of stress on the body actively delays healing because doctors are afraid we're going to get addicted. Flare-ups don't last forever, but if you could reduce amount of time a patient spends in hospital and in pain, it's just cruel not to do so.

TW: Miscarriage

So I have stage IV endo and I have had most of it removed, with some painful bowel endometriosis they couldn't without causing incontinence. The combination of surgery and a mirena left me with what I'd describe as a manageable chronic pain condition that half the month caused me no pain at all, and the other half of the month could manage with ibuprofen, paracetamol and if needed THC/CBD oil. In other words, life changing positive results for an incurable disease.

However, been trying to get pregnant and not on hormonal BC. Recently had miscarriage that lead to 2 surgeries and an infection. And 2 endo pain flairs because the infection didn't clear first round. I notice that the only effective strategy and lessening my suffering and reducing the length of the flair seems to be the opposite of how doctors treat chronic pain, even though endo is a chronic pain condition. Here's what has worked and what hasn't:

Worked: Getting pain to basically 2 out of 10 as soon as possible, start with the strongest painkiller you can to do this, don't fuck around with thinking paracetamol will work by itself if you try it for four hours.

Keep pain under control for at least 24 hours, by any means necessary. Try to reduce pain relief to tablet endone, and and use something like buscopan to reduce muscle spasms. If still not working, try a low dose ketamine infusion overnight. After this I was able to go home within 2 days of a the flair starting, with just paracetmol and nurofen, able to rest and recover.

Not working: Wait for patients pain to gradually get worse until they are begging for more pain relief in the middle of the night for 4 hours, not sleeping until a doctor finally picks up the phone and orders minimum endone and diazepam without seeing patient at 3:30am, leading to 3 hours of sleep two nights in a row. Refuse to try any form of injectable, including ketamine infusion (because not enough evidence it works, even though worked previously) or in my case even IV antibiotics because "pain is not an emergency". Don't give them anything they can't take at home after leaving hospital, because they have chronic pain. Result: 5 days in hospital, sent home with 3/10 pain, short term opiate prescription and accompanying constipation, muscles all over body sore from tensing with pain, feeling terrified of another flair not being treated properly and wanting to just try weed and vodka next time until I'm actively dying.

I'm not a doctor AND I know opiates don't work in the long term for chronic pain. But for godsake, for all we know about neural pathways and heighted sensitivity to pain the more pain you experience in an area, why do doctors not even try to deal with women's acute pain differently? IT'S DIFFERENT. We're not over-reacting and we are reporting our pain correctly, and you're causing all sorts of stress on the body and actively preventing healing because you are afraid we're going to get addicted. Flare-ups don't last forever, but if you could reduce amount of time a patient spends in hospital and in pain, it's just cruel not to do so.

So I have had stage IV endo and had surgery nearly 2 years ago to remove most of it. The only bit they left was on my bowel because it would have involved removing a segment of my bowel that would result in worse side effects than having the endo in there. They still removed some of the bowel endo. I had 8 years of living with endo before I got diagnosed, 10 before surgery. My pelvic anatomy is distorted even after surgery, mostly due to pelvic adhesions.

I am struggling with infertility due to this, I had IVF and got pregnant, then had a missed miscarriage (no bleeding) at 10 weeks. I had a d&c, then I got an infection because it didn't remove all the products of conception, so I was hospitalized for a week and had further surgery and treatment. This predictably caused a massive pain flair up while in hospital but after 2 weeks out of hospital I was feeling fine, then I started getting PMS symptoms including typical endo pains.

This has persisted for 2 weeks without my period arriving, and my bowel in particular is really painful, getting butt stabbing pains and blood in my stool. Nothing I am doing is really helping with the pain, I can usually handle with my CBD/THC prescription and ibuprofen and paracetamol since I had surgery. But it's so much worse since this miscarriage, and my period is just not arriving. I know my hormones make a difference but it's been nearly 2 months, so wtf? Has anything like this happened to anyone else? Anything I can do to help things improve? I've got a doctors appointment booked tomorrow.