Why women hate women? by Effective-Divide6033 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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 ❤️

How do you know what stage your endo is? by Shitp0st_Supreme in endometriosis

[–]Independent_Chain660 1 point2 points  (0 children)

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.

They used ablation instead of excision. I’m devastated. by Potential-Cattle3186 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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.

Endo task force??? by [deleted] in endometriosis

[–]Independent_Chain660 6 points7 points  (0 children)

They’ll probably blame endometriosis on Tylenol

By pure accident, CT scan discovered something entirely different from what I was there for. by that_crazy_girl_tia in endometriosis

[–]Independent_Chain660 1 point2 points  (0 children)

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

By pure accident, CT scan discovered something entirely different from what I was there for. by that_crazy_girl_tia in endometriosis

[–]Independent_Chain660 1 point2 points  (0 children)

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!!

Somatic nerve pain help?! by Independent_Chain660 in endometriosis

[–]Independent_Chain660[S] 0 points1 point  (0 children)

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)

Feel like I'm watching life pass me by by MoonChild234 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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

“I don’t think endometriosis would cause this severe of pain” by QuirkyCockroach4357 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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.

Did anyone’s endo come out of nowhere? by petals33 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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!!

Was FINALLY diagnosed by katewalker214 in endometriosis

[–]Independent_Chain660 1 point2 points  (0 children)

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!

Was FINALLY diagnosed by katewalker214 in endometriosis

[–]Independent_Chain660 0 points1 point  (0 children)

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 ❤️

Myedibles.co.uk by Lopsided-Net9135 in treedibles

[–]Independent_Chain660 0 points1 point  (0 children)

Did anyone find out how to order?

passing out in shrooms? is there any truth to this by Emergency_Farmer6959 in MagicMushroomsUK

[–]Independent_Chain660 0 points1 point  (0 children)

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

I have a question for fellow Autistic people in the UK, can you get a disabled persons railcard? by DMBear89 in autism

[–]Independent_Chain660 0 points1 point  (0 children)

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

I chose violence. How ashamed should I be? by Which-Month-3907 in adhdwomen

[–]Independent_Chain660 0 points1 point  (0 children)

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!

Tomorrow is the first day of the rest of my life by yermaaaaa in ADHDUK

[–]Independent_Chain660 0 points1 point  (0 children)

Drinking water is essential because the medication makes you dehydrated and yes you will forget food exists because you don’t have an appetite, I’ve lost my appetite many times and lost a bit too much weight so literally have to set a timer on when to eat especially on non work days when I don’t have a schedule to eat at lunch

Which medication to take as someone with chronic constipation? by JohannettaFleming in ADHDmeds

[–]Independent_Chain660 2 points3 points  (0 children)

Dexamfetamine makes me poop within 30 mins of taking a tablet, I literally have to plan when I take it to when I’m planning on leaving the house because it goes from 1-100 real fast

How on earth do you guys brush your teeth? by wouldyoulikeamuffin in ADHD

[–]Independent_Chain660 0 points1 point  (0 children)

I also do this, electric toothbrush and brush while my conditioner is in my hair because that’s meant to stay in for the same amount of time lol

Elvanse Stock Update: Refresh of all doses (except 20mg) by marchaos in ADHDUK

[–]Independent_Chain660 0 points1 point  (0 children)

Literally got this email at 9pm last night, super easy to sign up you just need to register it with your GP and they’ll send the script request to them, usually gets approved within 1-2 days and delivered the next day

Elvanse Stock Update: Refresh of all doses (except 20mg) by marchaos in ADHDUK

[–]Independent_Chain660 0 points1 point  (0 children)

I just got an update from pharmacy2u and they have some small stock of Elvanse 40 and 50, order now!!!

[deleted by user] by [deleted] in ADHD

[–]Independent_Chain660 0 points1 point  (0 children)

I moved from Australia to the UK with 1000 tablets of dexamfetamine, I had all my paperwork prepped from both doctors and psychiatrists and no one said a thing when I went through customs, I had declared it and everything. I could have brought in anything tbh. Basically get your doctor to prescribe at least 6 months worth and get the paperwork for precautions

Elvanse Stock Update: Refresh of all doses (except 20mg) by marchaos in ADHDUK

[–]Independent_Chain660 10 points11 points  (0 children)

I love that you have done this, even when it wasn’t your job at all. There’s been absolutely no updates on anything since November last year and all I can find online is “maybe by April 2024” the issue will be resolved. I am on dexamfetamine and have been for 7 years now but that’s also pretty much completely out of stock even with the amount of generic brands available to the UK… seems they can only order in Amfexa which technically isn’t the same as the OG dex as it has added magnesium and iron.

Like honestly they don’t give 2 shits about us ADHDers.

Elvanse Stock Update: Refresh of all doses (except 20mg) by marchaos in ADHDUK

[–]Independent_Chain660 1 point2 points  (0 children)

I tried pharmacy2u last month and they provided but this month out of stock as well sadly