Hi everyone. I just wanted to give you a bit of my history before I go on to ask my question. Sorry in advance for long post .
I had a BSO in March last year during which it was confirmed I have Endometriosis, this wasn’t done by an Endo specialist however (I learned so much after the op about which surgeons should be performing these ops) and I was told that I should feel like a “New Woman” . Unfortunately this wasn’t the case, after only 3 weeks the pain returned and over next few months pain became even worse and symptoms increased. My consultant wasn’t available for my follow up and was on indefinite leave so I saw a different surgeon. He wasn’t interested in how I was feeling. He just discharged me. By this time pain was already increasing but I put it down to recovery after op. When this didn’t subside I went to see my gp and asked to be referred again. Unfortunately this was to the same surgeon I had seen at my follow up. This time he took me more seriously and suggested I needed a hysterectomy and that my womb was “sticking”. He wanted me to have Zoladex injections again. I’d already had a course of this pre operation. I came away not sure what I should do and searched for a specialist Endo consultant. I decided to request an appointment with a private specialist. After seeing him and having an MRI it was found I had severe adenomyosis, along with bilateral thickening of uterosacral ligaments, Div Endo on bowel, in vagina and rectum. I’m currently waiting for an op and I am really struggling now day to day while still holding down a full time job.
Onto my query.
For the last 5 weeks I have been experiencing right sided shoulder pain . Pain under ribs and back pain higher than I normally feel. I’m also feeling far more fatigued than I was already, feeling dizzy and lightheaded. I become breathless when doing even the slightest activity. I visited my doctors surgery today and saw a clinical nurse practitioner (who was not Endo sympathiser at all) . She dismissed this being Endo related , which it probably is, and said she could hear crackles on my chest. She said this was a chest infection . I haven’t got a cough or any of the normal chest infection symptoms. I don’t like to put everything down to Endometriosis but could it be related in anyway.? She has booked blood tests and ECG for two weeks time .
Thank you in advance for reading all the way through my post xx
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Sandygirl6697
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You can have more than one thing happening at once and it’s easier to want it all in a single package for our own sanity but …..You may (or may not ) have a chest infection even without the cough. However, the nurse has picked up the sign so perhaps give it the credence it needs.
That said : The dysfunction of the pelvic floor can cause rigidity of the diaphragm and pain under the right shoulder. Our bodies work in quarters and across the diagonal too. Most often endo is in the pelvis in the left groin to kick off with apparently so that’s where the ligament tightness begins. The equal and opposite is the right shoulder that will tighten to make accommodation for that. Like either side of a leaf curling towards each other in autumn. That can cause pain in the back, change in walking , change in our breathing. It can mean that the area becomes less mobile and with that more prone to infections( both pleurisy and pneumonias etc) . Neither are necessarily indicated by coughing but the crackling the nurse noted. They need to be taken care of if that’s the case.
You can also get endometriosis of the diaphragm and lungs. This may or may not show up on mri and is hard to spot. It’s thought to be rare but some debate this as rather not always searched for , but let’s say the frequency is up for debate even amongst the specialists . Certainly you ought to highlight this concern with your specialist if you’re worried this might be a possibility . Likelihood with the current thinking is it’s more the pelvic dysfunction and immune changes that are co factors of the adenomyosis and endo.
Thank you so much for taking the time to reply to me. This all makes complete sense and unfortunately those of us suffering from Endo very often miss other things that may be going on in our bodies. I put the pain and fatigue down to my other issues as they are getting worse so thankfully the nurse did check me over. I am having blood tests and ECG in a couple of weeks so she is covering the bases xx
A fellow culprit of that one🙄 so hope the nudge is enough for you to feel like you’re not going bonkers and take the time to cherish yourself and get better. 💐. Always extra confusing when in the process of getting to the adenomyosis/endo diagnosis we’ve usually got habituated into minimising the pain and symptoms and end up throwing everything in the one truck or denying the possibility of being sick ontop. The brain is an endlessly flexible and creative creature ….😵💫😵💫😵💫
This is so interesting, thank you for sharing! Just wondered if there are any articles or resources you could direct me to so I could read a bit further on it please? I’m fascinated and have been wondering about pelvic floor issues recently as well as having right sided shoulder, chest and flank symptoms…
If it were Endo, isn’t the key test that the pain symptoms would be cyclical, worse at different points in your menstrual cycle? It sounds like it would make sense to be guided by the nurse practitioner who examined you on this one. xx
Hi,thank you for your reply it is cyclical but also intermittent between. None of my systems are cyclical all the time as I have had my ovaries removed but I do tend to still have a cycle of sorts x
Before surgery I had at least some pain most days of the month but there were 3 weeks it was worse and one week it was better, and I could see a pattern to it. But I was really specifically referring the concern of there being endo cells in your lungs / thoracic endometriosis / endo of the diaphragm, which is rare but of course does happen. One of the ways of differentiating that from a chest infection would be if it were cyclical in nature, not that it would have to be, but that would be one of the considerations. I guess if you don't have ovaries that would make it harder to get to the bottom of! Anyway hope you feel better soon!!! xx
Wanwood 😀 The key bit ….it’s not always the case with everyone. Bit of a misnomer . It can be that things might start that way but especially when adenomyosis is added into the mix pain can be anytime and throughout cycles.
thank you BloomingMarvellous, that’s is how it is with me . My symptoms seem to be at least 3 out of 4 weeks now with even the fourth week being a struggle too but I do still feel a cycle of sorts and can always tell during the month when I would have been having a “period” . I really do appreciate your help and guidance on this. The trouble is a lot of people even Gynaecologists think Endo should be cyclical related. I think it starts that way but doesn’t mean it stays like that does it. I know now Ive been suffering with Endometriosis for years and years and only just been diagnosed so I am quite new to finding out how to advocate for my own body so you advice and that if others on here is precious . Thank you 🙏 so much xx
it’s tough when it takes so long to get clarification- mine took 44 yrs of being told all sorts. The relief of actually knowing is extraordinary and knowing that it’s a thing can be a weight off the shoulders. Hope you feel better soon
it’s a strange feeling finally getting a diagnosis because although it’s awful you also feel vindicated. I love your comment earlier about Unicorns, that will make me smile all day ❤️❤️❤️
Sorry I meant if the OP was specifically thinking of lung or diaphragmatic endo, if the symptoms were cyclical, that is usually one of the ways lung endo is diagnosed.
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