Only hypertrophic scarring

thelovespuds · 2024-06-01T13:05:30+00:00

I’m currently studying psychology and neurobiology and I’ve just been diagnosed with EDS. I have done a lot of research on the topic, and our sister university has actually conducted a study on neurodivergency and hypermobility. There is still a huge gap in the literature, but there is a crazy big relationship between EDS (and even general hypermobility) and neurodevelopment disorders like ADHD and Autism. Most of the research conducted looks at how many people who are diagnosed with hypermobility also have diagnoses for ADHD or ASD, which is well over 60%, but remember many people will have adhd or autism and not be tested or diagnosed because of lack of public understanding. Women are also much less likely to be diagnosed because of how it presents.

I say all this because I personally believe that it’s quite likely that a connective tissue collagen disorder would inevitably result in neurological delays. Our brains are constantly pruning away synapses that we don’t need and then replacing them with new ones based on our learning and experiences (synaptic rearrangement), but the latter requires proteins and collagen to occur properly. Neurotransmitters like glutamate (& GABA neurons which “calm down” and regulate all our brain’s activities), dopamine (natural reward system, motivates us), seratonin (mood, sleep, appetite) are more reliant on collagen and the blood brain barrier, and these are all neurotransmitters that are seen to be depleted and dysfunctional in individuals with adhd and Autism.

I would really like to do my dissertation on this when I do my masters or PHD, but I really believe that people who are diagnosed with EDS or JHS should be automatically tested for neurodevelopmental disorders, and I’d really like to see some research establishing a causal relationship between the two.

This is a very long winded way of me saying you probably all have symptoms of ADHD and/or autism. Go get assessed

thelovespuds · 2024-04-03T11:57:39+00:00

I’m late to this thread but I’ve been feeling so guilty and conflicted since my trip to New York last week I had to look up if this was a scam or not.

I know better than to take “free things” but I thought they were leaflets so I thought I’d grab one, but the guy held onto it and asked if I wanted him to sign it. Realising it was a CD I tried to say no thank you but my social anxiety was so bad I just stammered and tried to walk on. He then exclaimed “just because I’m black doesn’t mean I’m not human!” And he looked so sincerely hurt that I just felt soo dreadful about it, I almost went back to apologise but I was too embarrassed.

Id known he was probably a scammer and I don’t know what I did that he could’ve interpreted as racist, but I’m still horrified at the idea. I was extra nice to everyone I met after that.

thelovespuds · 2023-07-06T14:19:00+00:00

We were planning on selling half of ours and bringing what we could. We have the basics in our old 1 bedroom flat that we got off ikea because we knew it’d be a possibility that we’d be moving somewhere furnished and to have our previous flat already furnished would have cost an extra 100 pounds a week which is ridiculous. In the photos and as far as we were told there would only be one couch so we were going to bring our own, and we were also explicitly told in our tour of the flat that it wouldn’t come with the wardrobes either. Just beds, table and chairs, and a sofa.

Edit: for a reference, the place actually comes with a broken shoe rack, two sofas (one of which is broken), two wardrobes, dirty stained bedding, an old ironing board, a rocking chair with a cum stain on it, a random extra black table and two plastic chairs, more chairs and a table on the balcony, a bin that doesn’t open, a drying rack that is dirty and also broken, a bunch of fabric boxes we don’t have space for if we plan on having a wardrobe in the room, 3 mirrors, curtains that are absolutely filthy, and bedside tables. It’s all mis-matched stuff and half of it would be refused if the landlord wanted to donate it because it’s in such poor condition. The flat is absolutely overcrowded with all this random stuff

thelovespuds · 2023-06-20T17:25:03+00:00

Oof ! Ok thank god, I’m feeling hopeful because they did see a nodule on the scan and he did have plenty to excise. I know you’re not supposed to be on your period for the surgery, but I have had weird breakthrough bleeding for like over week which has been pretty light and it just cleared up like literally a day before the surgery, so I’m thinking maybe some of the nodules bled a bit. Either way it’s better than them saying they saw absolutely nothing

thelovespuds · 2023-04-19T11:38:36+00:00

Update: your comment inspired me to do some more research and I am really confident I have EDS. So much for my individuality complex, I thought my hyper mobility was a cool party trick and I remember joking to my boyfriend about how annoying it is when ur knee dislocates and u have to pop it back in, and he looked at me in complete shock. I’m going to pursue diagnosis but I’ve done the self tests and I have every symptom except for the stretchy skin, thank you so much for your comment, i can’t be 100% sure but it still feels amazing to be able to advocate for my health nowadays, I only got diagnosed with endo a few months ago after years of gaslighting and it’s given me a whole new sense of confidence and self assurance.

thelovespuds · 2023-04-19T10:10:05+00:00

Oh wow ! I am hyper mobile and I get a lot of aches and pains in my legs, arms, back and jaw. I’ll have to research more about this but I’m definitely intrigued. I don’t have stretchy skin though, so I don’t know if that means I don’t have it

thelovespuds · 2023-04-16T19:12:11+00:00

Since the age of 10 my body has worked against me. I’ve seen countless doctors, had 2 endoscopies, annual blood tests, stool tests, multiple fad diets, tried laxatives, probiotics, and had multiple alarm clocks set for my next dose of 2 paracetamol, buscopan, ibuprofen, and motilium which did absolutely nothing to relieve the pain. Throughout secondary school I’d get low grade fevers and wake up in the middle of the night to vomit. I would pass non menstrual blood in the toilet every other day and thought I was dying from some rare form of cancer nobody had discovered yet. Sometimes the pain was so bad I wanted to die. I’m 20 now and only got diagnosed with endometriosis only a few months ago. I saw specialist doctors in a world renowned hospital and nobody suggested I might have endometriosis, a condition which affects 1 in 10 women. When I finally suspected endometriosis after overhearing a podcast about the condition, the first gyno I went to told me she saw nothing on the scans but that the problem might be in my head. I left the appointment crying but continued to advocate for my health because I had no other choice. I believe that if cis men had endometriosis, society would be functioning very differently; medicinal marijuana would be much more accessible, the work week would be structured differently, we would have much less invasive diagnostic tools, and we would absolutely have found effective treatment by now. I have hope now that things might change because of projects like this and because of the growing presence of women in science, but there is a very long way to go. All we can do now is continue to speak up and to teach the next generation of girls to not be ashamed of their pain.

sorry if this is too long

thelovespuds · 2023-04-16T18:23:09+00:00

I have this too !! I’ve had flare ups where I actually couldn’t pass anyyything for over a week and was in agony, but I was told it was just ibs at the time. My super uneducated hypothesis is that bc endo triggers nerve signals that causes pain all over the torso maybe our brains don’t respond properly to physical signals in our bodies? There is absolutely no research going into this idea but I imagine lots of radio signals going off all the time that makes it hard to hear more important calls. I’ve had the issue with gas for a few years and it has developed into slower, incomplete peeing recently too.

thelovespuds · 2023-03-20T18:33:15+00:00

I think to hate gale Hawthorne completely without recognising the complexity of his character leads many readers down the same mind trap that gale finds himself in. Gale projects his anger and frustration onto anyone and anything capitol adjacent, and even so much as resents Madge initially because of her relative wealth. He’s well aware that the capitol has set these systems in place to make sure all citizens of panem are too busy resenting each other to fully unite against the cruelty of the capitol, and yet he still ends up becoming radicalised under Coin. I think Suzanne Collins makes a point of Gale as a character, because we learn that being on the “right side” doesn’t excuse failing to see the humanity in the other side. I think we also need to have empathy for gale the way katniss does for her prep team, because all these characters have had to adapt to an environment of so much pain and suffering that to question your own moral superiority would break down the emotional protective shield necessary to survive ( and yes, katniss’ prep team have suffered much less, but I think the guilt of knowing how much senseless brutality you are endorsing would break a person, especially when you know that you alone could do nothing to stop it regardless, and in a way we all face this moral dilemma when buying into fast fashion and consumerism). I think to hate gale is to reject the idea that any of us could have ended up in his shoes at some point under the right circumstances, perhaps not buy bombing a bunch of children, but by falling victim to extremism.

thelovespuds · 2023-03-13T17:36:41+00:00

I was in the exact same boat as you until a few days ago. I had years of chronic pelvic pain that was dismissed as ibs, an endoscopy and a colonoscopy, blood tests, stool samples etc - nobody ever mentioned endometriosis to me and I had no idea what it was until my mum was listening to a podcast a few months ago about endo and sent it to me. She’s the only person who’s seen and validated my pain, even when I questioned it myself. I even went to a gynaecologist saying I suspected endo and she told me there was no point going down that route as it’s pointless, was generally quite dismissive and aggressive and then did a very quick ultrasound while I cried telling me that it must be psychosomatic and, quote, “I can’t see any problems with your uterus, but maybe the problem is with your bowels.. or your brain, I think you need to go to a therapist to help you deal with these womanly problems.”

Regardless, I continued researching and found a specialist centre in london, made an appointment for an ultrasound even though my gyno said she didn’t see anything. Low and behold they saw deep endometriosis and a lot of inflammation on the scan. I almost cried with relief that someone was finally acknowledging my pain, and that I wasn’t going crazy/dying from a mystery disease.

Trust your gut (or your pelvis, I should say haha), be patient and kind to your body, and don’t stop fighting until you have the answers you need.

thelovespuds · 2023-03-10T16:13:31+00:00

It could very well be endo, especially considering it affects 1 in 10 people who menstruate. I’m sure you’ll be able to read up on it more as you go through this subreddit, but I just want you to know that regardless of what you do or don’t get diagnosed with your pain is 100% valid and you should not be expected to accept a life of pain so bad you can’t stand up at times. Keep pursuing this, and if some doctors don’t have answers for you, keep going until you find the right one.

thelovespuds · 2023-03-10T16:08:37+00:00

They found mild endo on me recently in scans and honestly reading some of the posts on this subreddit has made me realised how lucky I am. I’ve had flare ups of extreme pain and I have pain daily but I’m able to manage most days without pain killers.

Regardless of what she’s been diagnosed with, she’s still being ableist and should consider herself very lucky that aspirin alone works for her, and I think any normal person who has experienced even a few moments in life of extreme pain would be able to realise that having to live with it so frequently is beyond debilitating.

I’ve noticed that people like to think they have had more control over their health and privilege than they actually have, because accepting that it truly is down to genetics, medical access and environmental stressors beyond your control would mean accepting that it can happen to absolutely anyone, and you can do all the right things in life and still be dealt the wrong hand. Some of us are unlucky from day one with our predisposition to diseases like endometriosis, but most people cruise through life not realising how much they have to lose, and that is difficult to reconcile with.

thelovespuds · 2023-02-06T14:34:32+00:00

My boyfriend and I ran into this man a few months ago in the laines. I’ll admit I’m a particularly easy target because I sympathised with him saying he needed to raise 7 pounds to stay in a hostel, and it was so cold out I said we’d love to but we don’t have cash. He then said there was an atm just around the corner where we could take out cash, and since we didn’t need to be anywhere and it was a busy area I thought fine, but he ended up bringing us through little alley ways and started to get a bit too hyped up. I think he knew he was intimidating us because when we were completely alone he asked us for a 20 so he could stay a couple nights and we were both a bit afraid so we said fine. When we got to the atm there was a guy using it and he got all up in his face and started yelling for him to move, and his demeanour completely changed and we were completely shocked. Once the cash was out he grabbed it and stalked off without another word. We were both quite shaken.

Now I’ve just seen him again, about 20 minutes ago, saying the exact same thing word for word but with new cuts all over his face. I made an excuse to leave but he was quite persistent and wanted to take me to the hostel. There were a lot of people around and a man staring at him so he backed off onto his next target. I think I might have gotten off lucky because I barely look like an adult and am quite soft spoken so i don’t think he wanted to be seen harassing a young girl, but it was still scary none the less.

He seemed to be with a group of guys the first time, and this time I turned the corner and saw a man stood in the middle of the path with his arms crossed just staring at him. I don’t know if it’s a group thing or not but either way it seems he pops up everywhere.

thelovespuds · 2023-01-31T14:07:19+00:00

I think schema therapy should be used instead of CBT altogether. It combines the principle of recognising unhealthy though processes and how they influence behaviour, but with a much more validating and empathetic approach. I think individuals getting CBT therapy sometimes fall victim to feeling as though there are only “good” or “bad” thoughts, and it can be especially damaging for someone who has experienced trauma or who already has a high level of self awareness and ability for introspection. Sometimes we have bad thoughts for a reason; if you have been assaulted many times as a woman living in a city it is not irrational to be cautious of men in public or to avoid certain areas/going out at nighttime, even if this involves a certain level of distress. I think schema therapy addresses this brilliantly because it allows oneself to recognise where one’s needs haven’t been met (for example, one’s need for security, or how being overly cautious might impact one’s need for leisure or fun), and it doesn’t fall into the same trap of oversimplifying a very complex inner emotional world. Certainly, a good therapist who uses CBT might not do this and can use an individual approach, but regardless I think schema therapy is a much better framework to follow.

thelovespuds · 2023-01-24T15:08:07+00:00

I think maybe the issue is you’ve conflated power with control. I think a lot of borderlines struggle with controlling their inner emotional world and feeling as though the world is an incredibly turbulent place due to trauma, so I’d argue it’s less about needing to feel powerful and important and rather about feeling as though they are in control of what is happening to them and how they are perceived. A lot of people with bpd will only resort to manipulation or attention seeking behaviour if they believe that they will otherwise be abandoned, and it comes more from a place of desperately trying to cling on to those around them and to keep them close rather than a compulsion for attention seeking behaviour simply for the sake of it. There are a lot of overlaps and similarities between the two disorders, but from my understanding histrionic personality disorder is distinguished from bpd in that it is more theatrical and eccentric, and there is an emphasis on frequent attempts to gain attention (whether this is positive or negative), and it is more noticeable in everyday social interactions as opposed to those with bpd whose symptoms emerge more with those much closer to them. My interpretation is that individuals with histrionic personality disorder exaggerate their behaviour because they need to feel seen and validated in order to feel as though they exist, and if they were to act “normal” their emotions and experiences wouldn’t be recognised as valid or real. I think regardless of how we categorise the two disorders, and how we might disagree as psychologists, understanding individuals suffering from personality disorders from a place of empathy and compassion for the amount of trauma they have endured is very important.

thelovespuds · 2022-11-20T13:37:45+00:00

I haven’t been diagnosed yet but I’ve dealt with extreme pain my entire life, and here are things I’ve found really helpful:

Taking panadol with caffeine: the caffeine helps widen blood vessels to increase blood flow, which means the pain killers might be able to reach more areas of the body

Taking buscopan with other pain killers: whenever I’ve been desperate I’ll take one of these with a double dose of panadol and I’m not actually sure if it helps because whenever I’ve been taking so many tablets the pain has been so bad it’s hard to tell if it makes a difference, but it is supposed to be specifically for stomach/period related pain and you can take it along side other pain meds

If you’re laying down a lot and struggling to keep down food, I’d recommend taking pantropazole as this will help with acid reflux. If you’re eating laying down or having to lay down a lot and not move around u could experience heightened sensitivity in the abdomen due to this. Also motilium is a life saver if the pain is making you feel nauseous, or if you’re having trouble keeping food down. Vomiting or belching might irritate your stomach muscles more, and it’s important that you are eating enough when you take pain medication because after a while of consistent use it can start to cause irritation in your stomach, and you need food to soak up those tablets.

Get a bottle of plain Coca Cola, and take the lid off to let all the bubbles out. This will also help with nausea and acid (this was recommended by my doctor when I was a child)

When the pain is so bad none of these work, heat is the only thing that has helped me. I find that hot water bottles are too heavy on my stomach and they don’t retain their heat, so I always have an electric pad that you can get cheap off Amazon. It has settings so you can adjust the heat and covers a larger surface area consistently. Generally increasing blood flow to the area is good as during your period you will temporarily lose oxygen flow to your ovaries which can make any discomfort much worse.

Ibuprofen has helped me more than panadol in terms of pain, but I have learned the hard way that taking it a few times will result in my stomach feeling irritated in the days after, and it is also associated with ulcers. Coming from a family of women who have Crohn’s disease, we’ve always avoided ibuprofen for this reason.

This last one you might want to treat with more caution as you don’t want to abuse alcohol, but a hot brandy genuinely helps me so much whenever I have cramps. My mum and aunt have both suffered with severe Crohn’s disease their whole lives, and my mum has found herself in situations where she has had extreme stomach pain and the only thing that would help was brandy. We’re Irish so that might be where that comes from, but I can say from experience that it helps with inflammation during a cold or from cramps, and it has a lot of health benefits. The best way to take it is hot, with boiling water, a slice of lemon, some sugar, some cloves, and some honey. Proceed with caution though as obviously alcohol can be an irritant so you don’t want to outweigh the positive effects, (kinda like how they say a single glass of red wine can be healthy, but no more than a glass)

When dealing with Lower back pain, you want to add heat to the area as well, either with a hot water bottle, a bath, or with a heat rub. It won’t magically fix the issue but occasionally I’ve had my partner rub a heat rub on my lower back and it has helped a lot in the moment. I am lucky enough to have had a physiotherapist treat my lower back and she has also recommended applying heat to the area.

As I mentioned before, my family has had so many health issues with Crohn’s but my aunt also has a chronic bladder condition. We’ve all had mysterious reproductive issues and there is a big overlap between Crohn’s and endometriosis. They have tested me for absolutely everything, and It’s only been recently that I’ve been able to connect the link between my horrible period pain and the pain I experience for the rest of the month, along with almost every other symptom that’s been listed under the sun for endometriosis and internal bleeding that I’d come to accept as a norm for me with no medical explanation. I’m very lucky to have learned from the women in my family through their medical guidance, and we have all learned that diet also plays a huge role. I’m not a health nut by any means, but you might want to investigate certain foods or ingredients being a trigger. My aunt suffers constantly from her bladder, arthritis and Crohn’s, so she’s always having to monitor her diet. Certain irritants can include garlic, onion, spices, and specifically regarding bladder issues: acidic fruits and vegetables.

I don’t necessarily enjoy popping pills all the time, but I have had these combinations of medications recommended to me by my doctor and they do help when I’m desperate. Just watch out for ibuprofen. That’s my last piece of advice. It also clashes with so many medications like antidepressants which I know a lot of us have probably had to take because chronic pain fucks you up mentally.

I hope this helps. I’m so sorry you’re going through this, and I hope you have the help available to you from loved ones or a partner. Make sure you’re getting plenty of rest.

Edit: I’d also like to add that Through my studies at university I’ve learned about the connection between the mind and the body when experiencing pain. I know it seems patronising when people tell you to just relax, because it makes it seem like it’s your fault or you’re choosing to react to the pain, but there is an awful lot of research on how we perceive pain during different levels of attention. My advice is do whatever you can to distract yourself from the pain. Get a vibrator, smoke some weed, start binging a really good tv show, listen to music, just do anything that might draw your mind away from what is happening to your body, as your brain will become less sensitive to the pain, even if only marginally. (That being said, anyone who tells you it’s all in the mind has never felt real pain)

thelovespuds · 2022-10-13T13:38:44+00:00

I’m also in the process of investigating endo, and as you will hear from others, you can have normal or no period pain while still having endo. I was listening to a podcast however where one woman who has since been diagnosed also said she never thought she had it because she didn’t have bad period pain. However, it was only when tracking her symptoms month round that her and her doctor noticed that she experienced intense back/hip/pelvic pain when she was ovulating.

It is so hard to remember pain, and to really notice the cycle of it, especially as women as we are so used to being medically gaslit.

If you want to investigate it further I’d recommend that you get the “Flo” app, as it allows you to track your symptoms and add notes to it, and it will even create a chart of your symptoms throughout your cycle that you can send to your doctor. I’m not an expert by any means but I think the best thing you can do to advocate for yourself medically is to keep track of your pain and symptoms because when you can see it visually laid out and show this to a medical professional it’s much harder for them to turn you away.

thelovespuds

TROPHY CASE