Chest/back pain got worse: I have chest... - Endometriosis UK

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Chest/back pain got worse

shukudai profile image
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I have chest, back (and shoulder) pain, usually right side from just before my period and ovulation time. Around period I get breathing problem too. I get breathless even in bed and have to sit up. Yesterday evening I had really bad pain in my higher back and I had to sit down on the floor and if I breath I got pain in my chest and it was really awful. It was a couple minutes I think but that was the one of the worst chest pain recently. The dull pain is still there and I sometime get shooting pain. Yesterday was one of my heavy bleeding day of period.

I have told this chest problem to GP but he wants my Gyne consultant to deal with it and he wants me to wait until next appointment which is in the end of February. I will have two more periods by then. This chest pain has been going on for months and I had a lap in October and my GP has written that I have chest pain and asked to check diaphragm during the lap. I didn't see the consultant after the lap and only saw a doctor who was one of his team who wasn't in the lap and she was telling me the result from the paper. Nothing was mentioned about diaphragm so I don't know if they have checked and didn't find endo there or they didn't check diaphragm at all.

My GP believes this chest pain is related to do with my period / endo so he wants to leave with my gyne consultant. He wouldn't consider anything else. I did say it happens during period which was stupid of me but it was true.

Are there any other problem(disease) which gets chest/back pain with period apart from endo? Should I have my lung checked out soon or I could wait until February appointment? My breathing usually get better completely by the time my period finish, sometime breathlessness doesn't go away and it ringers and get worse at ovulation. Should I go back to the GP and report that horrendous yesterday chest pain?

My GP told me to check if my lung is collapsed or not, I have to have a X-ray when I have chest symptom during my period. By the time I get an appointment on Monday, my bad days are probably over and if they managed to give me X-ray it may be too late this time.

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JulieUK profile image
JulieUK

Hi. You have a great GP!.

I have endo in my right lung....your symptoms are very similar. I have now had 3 ops and my first consultant suggested that my lung had signs that it collapsed a little most cycles. Your body can typically repair a small collapse but if it builds it will result in a collapse requiring a hospital stay and also maybe an operation.

The diaphragm can be clear...the endo has other ways of getting through as in my case initially (altho now it has damage). You are heading in the right direction...it is managed by gyny but established by thoraics (diagnosis is via xray collapse but really only confirmed via lung biopsy following a lung repair op).

I wouldn't hang around with attempting to see gyny but thoraics will only be interested if they need to operate..i.e. if you have a large collapse.

Good Luck.

shukudai profile image
shukudai in reply to JulieUK

Thank you for your reply JulieUK. You don't have endo in the diaphragm but in the right lung?

When you have a little collapse, what do you do? Do you just wait until it repair itself? How do you know when you have big enough collapse to need to report to the hospital? How long do you wait for pain/breathlessness to go away?

My chest pain was not every months at the beginning of this year and I wasn't sure if it was related to my period. I was only realized after May when I was checking my diary that I had chest pain during the period before. Unfortunately my appointment with consultant was in April and I realized too late to tell him. I think since summer it has been more less every month and recently it's getting worse.

My next appointment is in the end of February and I will have 2 more periods by then. I am a bit scared if I get that horrendous chest pain again before the appointment. When is the best time to have X ray? When I start getting breathlessness? or just after the bad chest pain? When did you have X ray to get diagnosed?

Sorry to ask many questions.

JulieUK profile image
JulieUK in reply to shukudai

Hi there shukudai. Yes…this typically only affects the right (I read that only <5% have both affected or left) so right sided pain is a possible indication. My diaphragm was clear in 2009 at the first op but wasn’t on my second Op in Dec 2012. Thoracic endometriosis was diagnosed after the first op to repair my collapsed lung via a biopsy taken during the op. Unfortunately I didn't know this until my lung collapsed again 3 years later when the same doc realised that they hadn't shared the results of the biopsy. Leading up to my 2nd collapse (and from memory the first time) I noticed that each month the breathlessness and shoulder pain was getting much worse but then resolved after my period. Then it simply didn't resolve. My GP sent me to the hospital on each collapse when I presented with breathlessness that continued/didn’t resolve so that was my trigger to sort it out.

The first collapse in 2009 was much bigger...I couldn't walk up the stairs without difficulty breathing so need for GP was pretty obvious and they sent me straight to the Emergency dept who admitted me and I left hospital 4 weeks later having had a pleurectomy. This op meant that the 2nd collapse was much smaller and so I was more relaxed about heading to the hospital. The GP arranged for me to go via thoraics as I knew that only these could help – I was scheduled for a lung repair op 3 weeks later so not urgent.

I've found that I can tell pretty well if my lung has collapsed….listen for a crackling noise as you inhale (if you put your fingers in your ears it is easier to hear). You may also be able to sense a bubble of air moving around your chest as you bend over. If you put your hands on your ribs and breathe deeply you can also sense that your ribs aren't moving evenly. I also sensed a strange 'drawback' when you breathe out/blow.

It is hard to catch your lung down on X-ray as scheduling an Xray for the right time can be hard but you could always present at the Emergency Dept when you feel a problem. This won’t establish endo in the lung – just a collapsed lung however…If this is your problem you need to push for thoraics to investigate…but as I said they will only do this when you actually have a lung that needs repair. Getting a diagnosis without a collapsed lung would be pretty tricky in our health system but not impossible if you can catch your lung down on Xray.

This is now managed via injections to eliminate periods via the Gyny team. The Gyny team are the eventual solution...these have been great. I would push for treatment from these asap in tandem with Thoraics if you can get a diagnosis.

Hope this helps. Good luck.

shukudai profile image
shukudai in reply to JulieUK

Thank you for telling me your story. It was really good to know.

When you have a small collapse, what do you do? Do you take any painkiller for chest pain? I usually have very bad pelvic pain (I have dense abdominal adhesion) before chest pain and I am taking Naproxen 10 days before my period started and I am still taking it when the chest pain starting but Naproxen doesn't seems to work for the chest, shoulder or back pain.

I sometimes found bubbling feeling in my side of chest (around rib) and I wondered what that was. I thought maybe something was digesting, well it could have been. I haven't notice crackling noise so far. When I bend over my chest and back hurts.

I drive to work and the carpark is downstairs and my office is on the first floor. Usually I use staircase for 2 floors. When I have chest problem, halfway up the stairs I really regret that I didn't use the lift (I don't like lift). When I got to the office I am really out of breath and take good 15 minutes to recover and even after recovering I can't stop coughing.

When big collapse happens, how long does pain last? Does it come and goes?

I hope you have a good Christmas and not in pain. Take care.

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