Thoracic endometriosis - catamenial pneumothorax

[Ecorc]

Hey,

Does anyone else suffer from thoracic endo?

I've had 11 lung collapses in the past year now. I had lung surgery in March which didn't work so they've put my on the progesterone only pill to suppress my periods to give the surgery a bit more time to work. If it doesn't I'll be back under the knife.

I've been trying to conceive for over a year now with no luck and have finally got onto the IVF list but I'm not sure I'll even be able to go through with it because my lungs not fixed yet and the IVF hormone injections will make the lung collapses worse. I'm genuinely the only one out of my mates that doesn't have a baby or currently pregnant and its so isolating. I'd love to meet some people that don't have children so I'm not constantly reminded of what I don't have.

It's such a rare condition, I've not really come across many posts about it on here so just wanted to reach out to see if anyone is going through anything similar?

X

[Blue_Sky12]

11 in a year sounds horrendous! I am sorry that things are hard for you. I am suspicious that I may have thoracic endo but my symptoms are nowhere near as advanced as yours and I’m currently on a very long waiting list! I have cyclical shortness of breath that’s significantly worse before ovulation and period, then I get one sided chest, shoulder and arm pain that follows a similar pattern. It’s gradually gotten worse over the course of a year or so, and I’m a bit nervous it will develop further before I’m seen again.

[Ecorc in reply to Blue_Sky12]

I'm so sorry you're experiencing that, it's no fun not knowing is it. Does it make you tight chested or short of breath? I'm surprised they haven't x-rayed you when you get the symptoms!

[Blue_Sky12 in reply to Ecorc]

I think it’s the not knowing and second guessing that’s the worst, it makes me question everything until I have an episode and then I’m reminded it’s definitely real, I just feel so unheard!I have had two chest x rays and bloods in case of a clot. I had surgery last year but with a general gynae and she literally only looked at my uterus/ovaries despite me listing all the symptoms in other parts of my body 🤦‍♀️ Fortunately I saw an excellent GP who referred me for a second opinion, which I’m now just waiting for the appointment for. I think once they ascertained I didn’t have cancer or a blood clot it was easy just to refer me onto someone else!

It makes me short of breath, like I can’t catch my breath/get enough air in. when it’s bad I can’t read a sentence without having to pause to breathe. I also have asthma but it’s mild and well controlled and very different to this where I’m not wheezing at all. I just feel like I’m constantly second guessing myself!

I’d be interested to know your symptoms if you wouldn’t mind sharing?

[Ecorc in reply to Blue_Sky12]

Oh my goodness you poor thing! Why do we have to fight our corner so much?!

I was v lucky in my diagnosis as I work as a nurse so can scan myself at work when it happens and then just tell my surgeon. I found a brilliant thoracic surgeon that specialises in catamenial PTX but doesn't force surgery on you, he's v good at helping you weigh up the options.

I get extreme pain behind the right shoulder blade when it happens, feel tight chested and then short of breath talking/walking/ somteimes just sitting still! It's pretty much always on day 2 of my period. I then have this horrible sort of friction rub when I bend over or change position when sleeping, I think that's when there's fluid there too and it's trying to heal. Maybe due to inflammation too so the lung is catching a bit when I move too much. That's not painful but it doesn't feel v nice. The symptoms are better since I've had surgery but not completely disappeared.

I've just gone on the POP to see if that stops them for a while and to give my body a bit of a break. I feel so tired on it which is apparently a symtpom so I'm hoping I can function at work for the next few months 😄 the things we have to deal with as women hey!!

[Blue_Sky12 in reply to Ecorc]

thank you so much for your reply, it’s made me feel a lot less like I’m going mad! When I get breathless it tends to slowly build before my period and then I have two or three specific days where it’s really bad. I also have a lot of pain, aches, and tenderness around the base of rib cage, but have had several scans and rounds of bloods to assess kidneys, I’ve wondered recently if there’s any chance that could actually be diaphragm related instead. The not knowing is the worst thing for now as it makes me feel like I’m going mad!

I hope you feel better on the new medication! Nursing must be so demanding at the moment, I can’t imagine there’s much opportunity to slow down! x

[Sholla in reply to Ecorc]

Hi l have lots of pains across my upper back, just in random places, but all below shoulder blades. Crushing on my spine and like someone poking me hard and tingly sometimes in other places (lungs?) I've never had a collapsed lung (touch wood). I have the short of breath/pain under ribs bloating. Does it sound like endo to you?

[Lovepenguins]

So sorry to hear this. I have stage 4 Endometriosis and in march they found Endometriosis on my diaphragm/endocardinal area but am still waiting on follow up so not sure where exactly. I had a pneumothorax with pneumonia a few years ago and i suspect its the same thing. It is so painful and Endometriosis is debilitating enough. I am blessed to have children but had a lot of miscarriages so i cant imagine what youre going through. I wish it wasnt taboo and there was more awareness and understanding in life and medical professionals. I am in constant pain and always scared ill give up work and aged 33 i dont feel ive had a life as ive had this 22 years. Stay strong but its ok to reach out and ask for help x

[Ecorc in reply to Lovepenguins]

You poor thing! It's brutal enough dealing with one thing! Were you diagnosed with endo v young? I went on the pill for 8 year which must have masked a lot of my symptoms and since I've come off it, it's all kicked off.

I'm 35 and only got diagnosed by them finding an endometrioma a couple of years ago. Explained my bad periods though, lol.

I was lucky to have a surgeon that specialises in thoracic endo (just unlucky the surgery didn't work!) and I've asked if he could set up a support group for the women he operates on. We're so rare, it's hard to find other that are going through the same thing and its v debilitating as I spend half of every month not being able to exercise and getting breathless talking to people!

I had endo on my diaphragm too but seem to be much more regular with my lung collapses than you, it's funny how it affects people differently. Fingers crossed that one was it for you and you won't have any more!

The impact it has on work is mad isn't it! I'm a nurse but thankfully stepped out of clinical a few years ago so it's not quite so physically demanding. I try so hard to keep cracking on but some days it's just not possible. I think it's v mentally draining too. I keep wondering whether I should become a dog walker instead 🙃

I'm seeing a brilliant counsellor at the moment. It's just really helpful speaking with you girls who are going through it too x