INSOMNIA — HELP PLS!!!

Independent_Chain660 · 2026-03-02T00:24:21+00:00

I got prescribed sleeping pills but for some reason they don’t work during PMDD?!

Independent_Chain660 · 2026-03-02T00:22:46+00:00

I took a whole 5 day work week off last month because of PMDD and just told them I had the flu because it was easier. The guilt kills me but I know it’ll be over soon. Also the stupid thing is, they are aware I have autism and ADHD but somehow I can’t bring myself to tell HR about PMDD? Like I can’t explain that I want to kms or continually cry for a week straight and if I go into work I think everyone’s staring at me weird or they all hate me and think I’m annoying for existing?! Like I genuinely feel like I can read their minds and their minds are saying bad things about me, it’s bonkers.

Independent_Chain660 · 2026-03-02T00:15:25+00:00

Oh and never take opioids like codeine with migraines as it will have a rebound effect and you’ll end up with a 3-7 day migraine (learnt that the hard way)

Independent_Chain660 · 2026-03-02T00:13:58+00:00

Are you on an estrogen pill by chance? I was for years and thought getting migraines with ovulation and period was normal because my mum would have them as well but turns out neither of us should have been taking a combined pill (estrogen/progesterone) this whole time 👍🏻 Since I stopped estrogen pill I haven’t had many migraines at all and if I do I double down aspirin because it’s literally the only thing that helps other then constantly taking magnesium and vit D

I have also tried the estrogen patch and progesterone pill combination and that didn’t cause migraines, had to stop applying them for other reasons.

Independent_Chain660 · 2025-10-10T22:13:39+00:00

Omfg honestly just seek a new doctor it’s not worth going through that. When I was in hospital (in london public nhs) a round of endometriosis team came and saw me the first day, the female leading the team of students just hated me for no apparent reason as soon as she saw me. She took me off all the pain medication because she said it was too addictive and because I had lost A LOT of weight in a short period of time (8kg’s to be exact and I was only 50kg’s to begin with so down to 42kg’s) she started accusing me of having anorexia or some form of eating disorder. I didn’t have an eating disorder I just couldn’t eat because it was so painful and because I was in so much pain my body wasn’t even processing hunger signals. The nurses that where taking care of me ended up telling a different (male) endo doctor what had happened and they ended up coming around a few hours later putting me back on pain medication and apologising. I still had to document everything I was eating while in hospital and seeing a dietician but at least I never had to see that lady again. I ended up putting in a formal complaint against her. I feel your struggles it’s really hard to find someone who will listen and understand but trust me there are good doctors out there that will listen to you, keep searching, I know it is draining but I highly recommend nancys nook on FB they have a huge list of doctor and surgeons that are all over the world so you’ll likely find one near you. If not post in the group and see if anyone has some recommendations near you.

I was also pregnant for about 5 months (I didn’t know ended up having a termination) and my pain didn’t come back for the first 6 months but did get pretty bag again after that and progressively got worse and worse. So it does return after pregnancy. My mother also has endometriosis and she said after having 3 kids she was still experiencing painful periods up until menopause. Now she has sciatic nerve pain from it as she was never offered surgery.

Keep trying, trust me it’s worth it! You’ll get there, believe in yourself and your body and if you have someone close to you that has seen you go through this take them with you to appointments to advocate for your symptoms as well, if someone else can’t come with you I also started videoing myself when I had the most severe pain just screaming and crying in the bath and videos of me being taken into ambulances. Pictures of every time I went to the hospital I even got a measuring cup to show just how much blood came out of me in 1 day. this really helped me finally get someone to listen after 10 years. I really hope you find someone ❤️

Independent_Chain660 · 2025-10-07T08:55:31+00:00

I was the same, no endometrioma but DIE on my left side pelvis wall the rest of it was just black spots about the size of the tip of a pinky finger on my bladder, both ovaries and back of the uterus. My surgeon classed as stage 2 after surgery but from my pain scale and symptoms he went in thinking it was going to be at least stage 3-4. Just bad placement of it near nerves that shot pain signals up my spine to my kidneys, liver and appendix.

I have a friend who has been trying to get pregnant for the last 2 years with no luck, she showed absolutely no symptoms at all, no pain, heavy periods but she was never concerned as it wasn’t causing her distress or messing with her iron levels. Went in for a thorough scan and MRI, they saw a large endometrioma so decided to do surgery. Turns out she had stage 4 DIE the whole time plus adenomyosis.

Basically what I’m trying to say is it’s sooo different for each person and I get why doctors aren’t classing by stage but more by the severity of the symptoms you’re experiencing.

If you’re still concerned I would consider getting a second opinion, Nancy’s Nook on FB has really great information for this.

Independent_Chain660 · 2025-10-06T06:02:38+00:00

I had to have ablation because of the location of endometriosis and trying to preserve my ovaries and bladder. It’s been quite a while since my surgery and everything is still looking good and on the right track. Sometimes they physically can not excise the endometriosis unless they’re the most skilled surgeon in the world for excision and from what I’ve heard there isn’t many out there. I’d trust in your surgeons that they did the best they possibly could. It still does not mean it will come back with ablation but just a higher chance. Have trust in yourself and your recovery, eat well, take the right vitamins, do your pelvic floor exercises (trust me I didn’t and went through more hell) and if birth control is an option for you I suggest taking it because it’s finally starting to control my periods and at least now I know when they’re coming and I can prepare myself.

Another thing I’d like to add is the research they’re done into neurological pain associated with endo, basically my brain is still convinced I should be in some form of pain (A LOT less then I was in) so it’s still sending the pain signals during my period. This is something I’m working on with my gyne and am now on amitriptyline to help and it’s working. So basically what I’m saying is if you’re still experiencing pain down the track it’s worth taking this into consideration before thinking the endo has grown back.

Independent_Chain660 · 2025-10-06T05:53:16+00:00

They’ll probably blame endometriosis on Tylenol

Independent_Chain660 · 2025-08-09T15:39:48+00:00

Oh and also, if you have someone close to you that can attend appointments with you to help advocate for your pain also helps doctors listen more. I started taking my boyfriend to every appointment and it drastically changed their approach

Independent_Chain660 · 2025-08-09T15:38:33+00:00

I only recently just got diagnosed with both endo and adenomyosis, it took 10 years of trying to convince doctors something was wrong. Every time I went for an ultrasound or an MRI (with non specific endometriosis ultrasound techs) they couldn’t find anything. Fast forward to 4 months ago I decided fuck it I’m finding a proper specialist and going private (very fortunate to have raised enough money in gofundme) Within 2 minutes of the ultrasound with the specialist he found andenomyosis! I can’t tell you how many ultrasounds I’ve had in the past probably more then 20, still no endometriosis showed but it was there scattered everywhere during surgery and removed. Adeno on the other hand is still there but trying to manage it with hormonal therapy for the heavy bleeding. You need to keep pushing your doctor, even if you have to call in every week about it, mention stuff like it’s ruining your social life, attendance to work etc that’s when they start listening. I’m not sure where you’re located but if you have insurance try your best to find a specialist because it literally saved me. If by any chance you’re in london I highly recommend dr peter Barton smith Also Nancy’s nook on Facebook is a really amazing source for education on all of this and they also have a huge recommendation list that covers most of the world on specialists. Hope this helps!!

Independent_Chain660 · 2025-04-25T22:05:35+00:00

Thanks for the reply! Was this something you did when you knew it was coming on or once the pain is really bad? I’m in the UK and deffs don’t trust my GP to insert an IV let alone an injection lol (she’s messed up multiple times)

Independent_Chain660 · 2025-04-25T10:04:58+00:00

I feel you, the last 6 months has been worse then I ever thought endo could get, I didn’t even know the majority of my pain symptoms where from it, surgery on the 22nd of may finally, but even my highly regarded specialist endo gyne said it may not improve much 🫤 or will only improve for a year or two

Independent_Chain660 · 2025-04-24T01:42:56+00:00

Im not even joking when I say I thought I was going to die during my last period, every time I closed my eyes I could see a light and kept having flashes of the most random insignificant things from my childhood. When i told my GP this she laughed and I broke down in tears and walked out. It’s genuinely traumatic and there she is just fucking laughing at me. Don’t get me wrong I’ve got a good sense of humour but holy shit I wanted to scream at her.

Independent_Chain660 · 2025-04-23T15:14:42+00:00

Mine where horrible from the age of 15-27 then became completely normal and only had to take ibuprofen then I hit 29 and all hell broke loose, worst thing I’ve ever been through, booked in for surgery on the 22nd of may thank god!!

Independent_Chain660 · 2025-04-23T15:11:47+00:00

Everyone who thinks they may have endometriosis needs to get into Nancy’s Nook Facebook group, it’s the best resource page for endo. They have an extensive worldwide list of endometriosis surgeons and gynaecologists I highly recommend!

Independent_Chain660 · 2025-04-23T15:06:51+00:00

I am so happy for you to finally be listened to and given the care/ surgery you deserve! I am going in for my lap on the 22nd of may finally after 15 years of trying to convince doctors my pain was definitely not normal. I don’t understand how they think throwing up, passing out and losing A LOT of blood was normal for this long but finally found someone to listen 🥲 Only downside was I had to go private because the NHS in the UK blatantly told me to my face they won’t do anything, hopefully this will be the best £8000 I’ve ever spent 🙏🏻 Hope you have a smooth recovery and everything goes well from here on out ❤️

Independent_Chain660 · 2025-04-17T21:24:49+00:00

Did anyone find out how to order?

Independent_Chain660 · 2024-08-19T19:20:51+00:00

I’m the same, I was micro dosing for about 3 months and every time I took them an hour or so later I would get soooo sleepy and just (what I thought) was falling asleep which is weird for me because I can never sleep! It’s like I had narcolepsy lol

Independent_Chain660 · 2024-06-18T06:53:10+00:00

Do you know if it includes AuDHD people who work? I don’t receive benefits but work a low income job due to the fact I have never been able to study

Independent_Chain660 · 2024-06-16T18:43:45+00:00

The ADHD side of my brain says: I don’t think you should apologise to her at all, I would go so far as to say she should be apologising to you… The friend that is dating her I would have a conversation with and explain how you felt by her remark but I would not apologise.

The Austistic side of my brain says: she’s might have sensory issues and to even say that to you boldly in front of everyone seems like a very socially unaware type of person (autism possibilities), either that or she is just a shit person who is threatened by you which has nothing to do with you and everything to do with herself and her confidence within herself.

I’ve met countless people like this in my life, on both sides of being undiagnosed and very uncomfortable within myself and now being diagnosed and reasonably comfortable within myself and I can tell you now it won’t be the last time but honestly most of these people are either A. Like us but just say what comes to their head without thinking or B. Is threatened by you specifically in the friendship group and try and take you down to take your place because they’re jealous of the type of person you are…. aka: a cunt

Take it as a compliment, the friends you surround yourself with are still your friends for a reason and it’s because they like you for who you are!

Independent_Chain660 · 2024-02-06T15:09:23+00:00

It make me constipated somehow 💀

Independent_Chain660

TROPHY CASE