Rare endometriosis

Hi I'm hoping someone can give me some hope. I suffered with stage 4 endometriosis for a few years and had surgery in 2012 to separate my bowel from my womb. Since then I have been cured down there and don't get any pains. However, I now get weird sensations higher up and sometimes pain in my diaphragm area. I had an ultrasound which picked up a nodule in my vena cava which nobody can explain. I get pulsating around my body and shortness of breath, as well as pain in my chest. I've recently had tests with a cardiologist which came back clear. My scariest symptom is a blocked sensation down the left side of my upper body. It feels like my ear canal is blocked. I get pain when swallowing at times and have almost constant sinus pressure. When I sit down or stand up the movement gives me palpitations and horrible feeling something is getting stuck. This is more noticeable at certain times of the month. I know this is a long shot but I am completely lost with what's wrong with me and the doctors have no idea and put it down to anxiety. Has anyone come across rarer cases of endometriosis and could any of these symptoms be endometriosis? I've had every test and scan I can think of and seen so many different specialists. Hoping someone can helps me as I am fortunate enough to have 2 beautiful children and I am living in fear that this is serious. I need some answers. Endometriosis has ruined my life once before and I feel it could be this doing it again. X

6 Replies

Hi it could well be endo. It can be found pretty much anywhere in the body. I would ask for a referral to a BSGE endo centre.

My husband searched for ages to find the specialist who removed my bowel endo. Never heard of BSGE- does that list all the top specialists? Thanks. x

This is the list:


I assume this list are specialists that actually know what they are talking about and what they are doing? I have an appointment at Ashford Hospital soon and I have heard good things about them?


Gives you the list of centres. Sounds like your gp should refer you to one of these

As above you can have endo anywhere and it is an auto immune condition which means us endo ladies often suffer with other auto immune conditions like fibromyalgia or lupus etc. The former can cause numbness so ask bsge to consider it.

Best of luck.


I have a range of symptoms including sinuses problems with a swollen face, which I know are endo/hormone related as the are worse at ovulation and period. Bgse has told me they are related to endo, then not. I know my body as I've had endo for 30 years. Im still looking for something to help.acupuncture may help, I'm trying it at the moment. But do get a referral to bgse they are supposed to be the specialusts. Good luck xx

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