u/Hylian0sniper

I’m interested to know any info on why the surgery fails sometimes? My Son hasn’t had his surgery yet but I’m curious to hear anyone’s thoughts or stories
edit**
Just for clarification, my son will be having the blebs removed then the mechanical pleurodesis, he is suspected to have a connective tissue disorder which is being investigated currently, all I know so far is what the surgeon has explained but I am interested in hearing others experiences 🙂

Has anyone just said no to surgery and tried see how it goes?!
Im posting for my boy who’s 15, hes had pneumos in the past few months that were all mild enough that he was sent home (apart from the first which although mild the ER rec he needed 24hr oxygen) its been a few weeks now and he’s doing fine. He’s got an appointment with a surgeon in October to discuss pleuro/ vats but he’s really feeling against it.
I was just wondering if anyone else waited to see if it happened again or even till they finished school/ college etc

I’ve recently been diagnosed with adeno and my gp has put me on slynd bc to see if it helps while we wait for the gynae referral. It’s only been two weeks but I’ve started spotting and getting constant low level cramps (also my appetite has disappeared - not complaining at all about that lol!)
I know it’s early days and I will continue with it for a couple of months but I was just wondering if anyone else had tried it and their experiences on it ☺️

My son who is 15 is really going through it rn. He has all signs of a connective tissue disorder, has had multiple pneumothoraces and im trying desperately to be heard by any doctor. It’s so exhausting advocating ALL THE BLOODY TIME…. I just want him seen by someone who can tell me yes he has or no he hasn’t before any possible surgery happens just in case you know…. Feeling so much dread it’s unreal
Thanks for reading, honestly it helps just be able to rant on here

EDIT I’m in the Uk so everything will be NHS which ultimately means I have no control over who we see and when, but it will happen at some point 🤞🏼

Hey
So after multiple lung collapses (and a very strong possible diagnosis of EDS as his sister has it, we’re just waiting for genetics) my son who is 15 is now being put forward for surgery. His latest letter says that the ct scan of his lungs shows he has paraseptal emphysema (he has never smoked/ vaped) with bullae at the top of the lungs.
His sister has never had any lung issues so this is all new to me.
Has anyone else had experience with this or similar?
Thank you for any insights 🖤

Hi again,
We now have an appointment to see a paediatric surgeon but I’m curious if anyone has any idea if they might take a different approach to the surgery options if my son is also diagnosed with either EDS or Marfan as this came up as a string possibility when we were in the emergency room with his first pneumo in May.
If anyone has experience with this I’d love to hear your story
TIA 😄
*son is 15 has had 3 pneumos since May - right /left/ right

Hi all, so I recently got diagnosed with adeno, now im wondering could I possibly have endo as well…. I’m gonna list my symptoms and hopefully someone can tell me their experiences and if they are similar. Im also worried about going to my GP with this as I think they’re pretty fed up with me at this point 🙈 basically do any of these symptoms shout possible endo?

Ok so symptoms;
Extremely painful period to the point of collapsing in pain,
Massive clots
Feeling like pressure and heaviness in lower belly
Extremely painful gas moving round - feels like glass in my tummy and literally can’t move and have to pant with the shock and pain till it passes
Bloating and swollen tummy
Low back pain
Underneath pain, that goes down my right leg
Bleeding between periods
Pain during and after sex much worse in certain positions and lasts ages after deep inside like a horrible cramp
Sharp internal shooting pain (only lasts a second or so but is intense)
Also for context I have a bulky, retroverted uterus, I also have other conditions - Ankylosing spondylitis, fibromyalgia, PoTs, Chiari malformation 1, raynauds
If youve got this far thank you and hoping to get some advice!

Hi all, so I recently got diagnosed with adeno, now im wondering could I possibly have endo as well…. I’m gonna list my symptoms and hopefully someone can tell me their experiences and if they are similar. Im also worried about going to my GP with this as I think they’re pretty fed up with me at this point 🙈 basically do any of these symptoms shout possible endo?

Ok so symptoms;
Extremely painful period to the point of collapsing in pain,
Massive clots
Feeling like pressure and heaviness in lower belly
Extremely painful gas moving round - feels like glass in my tummy and literally can’t move and have to pant with the shock and pain till it passes
Bloating and swollen tummy
Low back pain
Underneath pain, that goes down my right leg
Bleeding between periods
Pain during and after sex much worse in certain positions and lasts ages after deep inside like a horrible cramp
Sharp internal shooting pain (only lasts a second or so but is intense)
Also for context I have a bulky, retroverted uterus, I also have other conditions - Ankylosing spondylitis, fibromyalgia, PoTs, Chiari malformation 1, raynauds
If youve got this far thank you and hoping to get some advice!

Hi so you may have seen my earlier post about my son (15) who’s had three pneumos over the past 6/7 weeks…. My husband is worried that this has happened because he is so inactive. I mean he is basically at his pc all day and goes on the treadmill walking a couple times a week, does some minor strength stuff in his room and some walks outside but that is pretty much it. He’s just a sedentary type person. He is quite slim, 5’11 and weighs 59kg
The question is - could he be so de-condition that his lungs are now suffering?? Or not?? I’d be interested in your personal thoughts. I have asked the paediatrician and she said no this would not affect him but my husband would like to ask this forum! TIA

Hey so I wanted to share this mri image I had done earlier this year, at the time it was done for my Ankylosing spondylitis spine check and no mention of any other organs were made on the report.
A couple of weeks ago I had a transv scan where they said definitively I had adenomyosis. Literally two days after that, my MRI report and images came back and after looking at them, I’m very confused about that big white circle on the left-hand side of my uterus….
Is this adeno?
I have an appt with my gp to discuss the results this Friday, any suggestions of what I should ask?
**FYI im 41 done with family planning and have ank spond and fibromyalgia

Hi all, my son 15 had his first and excruciating right side pneumo around 6 weeks ago, I was never told the exact details but the lung was down to his 3/4 rib on the xray. he stayed in hospital for 24hrs on oxygen and due to his stature and other signs they’ve said he may have EDS or marfans (they have put him on the waiting list for an assessment regarding this - were in UK)
Anyway ffw a few weeks and he has a check up xray, the right side has fully inflated but now the left had gone down an inch or so…. No treatment other than rest for that one as he was not symptomatic. Ffw another two weeks, back for the check up xray and his right side is all the way down again!
Again he’s not symptomatic and O2 levels are great etc so they’ve sent us home.
He had a CT scan yesterday and I had a peek - I could see obvious large blebs at the top of the right lung and a couple of small ones on the left which would explain a lot but still no answers.
We’re now waiting to see a respiratory specialist, I really hate the wait but it is what it is.
Those who have been through this, do you think they will do surgery? If so what type?
He is now so worried about even going on a walk it’s so sad im heartbroken for him.
Also random question but could this unusual heatwave we’ve had in the uk since May play any part in this happening now or is weather just not a factor 🤷‍♀️

Hi all, I’m looking for advice!
Last year I had a hysteroscopy to remove lots of polyps and a fibroid. It should have been straightforward but I have fibromyalgia and my body went into a massive flare during the procedure, I passed out from the pain and was kept in for a while after till my blood pressure was ok etc ….anyway I thought that was that but then last week I had another u/s due to the same symptoms as last year and was told that while the polyps and fibroid haven’t returned (thank goodness) I do have adenomyosis. I’d never heard of it before, but my god all my symptoms are on the list!
I’m now waiting on next steps, I have already tried b/c pills/ coil/ implant over the years and I’m just not sure what treatment is gonna be best for me. I’m absolutely terrified of having anything done due to the reaction I get with the fibro, but at the same time I definitely need this sorted. I’m in so much pain, this thing takes weeks of my life every month. And I would love to be able to wear jeans again! The bloat is enormous and so incredible uncomfortable!

I also would like to know re hysterectomy, can I have my fallopian tubes removed along with uterus and cervix but leave the ovaries? What are peoples experiences like for this condition? And are there any ladies from the uk who can offer advice on what to ask the doctor at my follow up?
FYI I’m 41