Just joined, have ME too. Absolutely hideous disease. Cant imagine 30yrs of it.
I have multiple chronic physical and mental conditions that have been mostly ignored since childhood. Doctors tend to think it can't be that bad or I'm making it up. Neurological symptoms, joint pain, spine degeneration, cardiac issues. My careers are not accessible to me any longer and I've been hospitalized against my will while psychotic from lack of sleep, so have difficulty accessing ctb resources. Can't drive and even if I wanted to try, my car has fallen into disrepair while my health has been majorly declining. I want a peaceful way out, I'm so tired of watching my hydration and food and sleep trying to get back to a state of health I'll never achieve. It's terrible, but I find myself wishing my diagnoses were terminal so I could access palliative care and medical aid in dying. Though I fear people with those kinds of diagnoses are suffering in a way I can't imagine.
TheFallen
Member
- Jan 10, 2024
- 11
dr18
Member
- Jul 20, 2024
- 5
Hi all, I would like to share my struggles with you all, about my lung troubles! I am a mid 20's woman, UK.
Late April this year my right lung collapsed spontaneously while I was at work (I work in drug development), searing shoulder and collar bone pain on my right side coupled with sweating, and an impending sense of doom appeared out of nowhere. I brushed it off at first as an anxiety attack but I felt a sudden urge to seek help. Paramedics arrived and assumed I was having a blood clot ,as I am on birth control, but an ECG/Blood Oxy/Pulse came back all normal. I was sent to hospital in an ambulance for further tests. A chest X-ray was peformed at hospital and I was discharged with 'muscle sprain' by the doctor. I returned home and went to work the next day with major breathlnessness and could hardly hold a conversation. Even coworkers noted it was odd. I felt pretty silly, I just went in an ambulance at my bloody work only to be discharged with a muscle spasm!? Well, I got a call later on in that day from the hospital apologising over and over again and that I do infact have a 'primary spontaneous pneumothorax' and I need to return immediately (they didnt check the xray results the day prior lololol). No chest drain was placed into my chest and treatment was to rest at home but I was cautioned to return once a week to monitor if the tear in my lung was healing. It was and I was seen by a lung specialist who told me this may reoccur and that it could be related to my period cycle (Catamenial Pneumothorax) as it happened on the first day of my menstruation.
Two months after, my second pneumothorax occured after I picked up my bath mat after showering. Same impending sense of doom, searing pain and the feeling of air bubbles rippling against my rib cage. I was kept in overnight at hospital with oxygen and scheduled for a pleurodesis surgery the week after. This surgery staples the troublesome right lung to the chest cavity wall via chemical means (talc) to prevent any more major pneumothorax. My period also started immediately after my second tear.
Surgery was fine but I am yet to even have my follow up appointment with a specialist to confirm that the surgery worked and to address my current issues. The woes of the NHS waiting list : (
Current issues being, I haven't felt the same since my collapses and surgery. Everyday my chest is in immense pain, on both sides, and when I am on my period these feelings are heightened. My anxiety is also extreme which is common place for pneumothorax sufferers. I haven't left my home in 8 weeks post surgery due to fear of it happening again. I'm on long term sick from my job that I absolutely adored as I cannot even commute to work without intense pain. If my lung collapses are related to my period (which I'm sure they are) that means I have endometrium tissue piercing into my chest cavity and threatening my heart and other major organs.
I have a silly logic. I don't want to suffer or be in pain. So I'll prolly CTB after I talk to my specialist and question him on my concerns of it being catamenial. I've been brushed off by the NHS medical system, misdiagnosed and not believed. I have a feeling it's because I'm a young woman and they couldn't care less or just have no clue about this lung stuff. When I bring up my concern of it being related to my period I genuinely get a zombie like stare from the doctors and no response...I feel like I'm fucking crazy.
My GPs are at a loss on how to help, I ring them about once a week telling them the pain is increasing. I also feel my right lung spasm inside of my chest cavity every few minutes and my surgery scars, especially where the post surgical chest drain sat, burn at night. I haven't had a decent sleep since they put me under for the surgery lol ! If death could be like being put under for surgery I'd be a very happy lady. God knows when I will next see a specialist, I've been told I'm on a waiting list for the actual waiting list itself so it could be years. I expect my left lung will collapse by then as the pain on that side of my body is increasing every day. Knowing I will have another medical emergency (statisically it's a guarantee) that might snuff me out is agonising. I would rather have control over my own death and via lung collapse is...not pleasant ! With each collapse the chance of it becoming fatal is pretty high, my right lung should hold up due to surgery but smaller tears can still occur even post surgery lol.
Late April this year my right lung collapsed spontaneously while I was at work (I work in drug development), searing shoulder and collar bone pain on my right side coupled with sweating, and an impending sense of doom appeared out of nowhere. I brushed it off at first as an anxiety attack but I felt a sudden urge to seek help. Paramedics arrived and assumed I was having a blood clot ,as I am on birth control, but an ECG/Blood Oxy/Pulse came back all normal. I was sent to hospital in an ambulance for further tests. A chest X-ray was peformed at hospital and I was discharged with 'muscle sprain' by the doctor. I returned home and went to work the next day with major breathlnessness and could hardly hold a conversation. Even coworkers noted it was odd. I felt pretty silly, I just went in an ambulance at my bloody work only to be discharged with a muscle spasm!? Well, I got a call later on in that day from the hospital apologising over and over again and that I do infact have a 'primary spontaneous pneumothorax' and I need to return immediately (they didnt check the xray results the day prior lololol). No chest drain was placed into my chest and treatment was to rest at home but I was cautioned to return once a week to monitor if the tear in my lung was healing. It was and I was seen by a lung specialist who told me this may reoccur and that it could be related to my period cycle (Catamenial Pneumothorax) as it happened on the first day of my menstruation.
Two months after, my second pneumothorax occured after I picked up my bath mat after showering. Same impending sense of doom, searing pain and the feeling of air bubbles rippling against my rib cage. I was kept in overnight at hospital with oxygen and scheduled for a pleurodesis surgery the week after. This surgery staples the troublesome right lung to the chest cavity wall via chemical means (talc) to prevent any more major pneumothorax. My period also started immediately after my second tear.
Surgery was fine but I am yet to even have my follow up appointment with a specialist to confirm that the surgery worked and to address my current issues. The woes of the NHS waiting list : (
Current issues being, I haven't felt the same since my collapses and surgery. Everyday my chest is in immense pain, on both sides, and when I am on my period these feelings are heightened. My anxiety is also extreme which is common place for pneumothorax sufferers. I haven't left my home in 8 weeks post surgery due to fear of it happening again. I'm on long term sick from my job that I absolutely adored as I cannot even commute to work without intense pain. If my lung collapses are related to my period (which I'm sure they are) that means I have endometrium tissue piercing into my chest cavity and threatening my heart and other major organs.
I have a silly logic. I don't want to suffer or be in pain. So I'll prolly CTB after I talk to my specialist and question him on my concerns of it being catamenial. I've been brushed off by the NHS medical system, misdiagnosed and not believed. I have a feeling it's because I'm a young woman and they couldn't care less or just have no clue about this lung stuff. When I bring up my concern of it being related to my period I genuinely get a zombie like stare from the doctors and no response...I feel like I'm fucking crazy.
My GPs are at a loss on how to help, I ring them about once a week telling them the pain is increasing. I also feel my right lung spasm inside of my chest cavity every few minutes and my surgery scars, especially where the post surgical chest drain sat, burn at night. I haven't had a decent sleep since they put me under for the surgery lol ! If death could be like being put under for surgery I'd be a very happy lady. God knows when I will next see a specialist, I've been told I'm on a waiting list for the actual waiting list itself so it could be years. I expect my left lung will collapse by then as the pain on that side of my body is increasing every day. Knowing I will have another medical emergency (statisically it's a guarantee) that might snuff me out is agonising. I would rather have control over my own death and via lung collapse is...not pleasant ! With each collapse the chance of it becoming fatal is pretty high, my right lung should hold up due to surgery but smaller tears can still occur even post surgery lol.
I felt this deep inside. Doctors don't give a shit about women. I swear their eyes all glaze over and they're half falling asleep if you even bring up periods. If we're not actively trying to concieve they don't wanna hear about you or know about you, even if your quality of life is severely impacted, even if the health repercussions are dire. It is neglect and if there was any justice in the world they'd lose their license or get sued to kingdom come for medical malpractice. I like to imagine there's at least a special place in Hell for them if it exists.
I am so sorry. My Dm's are always open if you want to talk.
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dr18
Member
- Jul 20, 2024
- 5
Exactly!! I got lucky my first lung collapse as the lung specialist who helped me, was a woman! Thank god because she was ever so caring and lovely and prompted me to get on other doctors butts if another collapse happens, due to her suspecting its relation to my periods. As it is a matter of emergency, if there is tissue threatening my chest cavity I will need literal sections of lung removed alongside other parts of my chest cavity (diaphragm).
This condition is rare and my heart sunk when I read it's relation to periods...Because I knew from that day on I would never be taken seriously ever again. Compared to other health issues I've had (Eczema, ptsd) this is going to be tough to be 'believed'. I try to push it from my mind til I speak again with a specialist to address my fears of this. For now, all I know is my lung might of just collapsed randomly...! Ugh I just remember I went A&E two weeks ago due to intense pain again and my GP wanting an X-Ray to confirm no new collapse and the A&E doctor's face just ... glazed over and he looked 'through' me as soon as I said "I'm on my period and these chest pains reoccur stronger on the first day of my period". He said nothing at all. Just offered morphine...Wonderful.
Thank you love, same to you if you'd like to chat.
yellowjester
Experienced
- Jun 2, 2024
- 215
@dr18
I'm sorry you're not being taken serious snough. Medicine has a history of... not being exactly kind to women. I know how doctors talk about their female patients behind their backs and it f--ing disgusts me.
The best advice I can give you is to bring someone with you to the appointment. It would make things a lot easier for you. It doesn't have to be a man, just another pair of eyes and ears to make sure they're not dismissing your pain.
I'm sorry you're not being taken serious snough. Medicine has a history of... not being exactly kind to women. I know how doctors talk about their female patients behind their backs and it f--ing disgusts me.
The best advice I can give you is to bring someone with you to the appointment. It would make things a lot easier for you. It doesn't have to be a man, just another pair of eyes and ears to make sure they're not dismissing your pain.
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