Hi I've pretty much convinced myself I have endo all over the place. Including possibly in my veins (vena cava) which terrifies me. I don't want any more children and will do anything to stop it progressing and spreading anywhere else. I haven't had a lap for a few years as I've had 2 children recently. The pain is all in my chest and neck area. I get palpitations and chest flutters which scare me silly. I was swimming the other day and noticed pain and difficulty getting breath when my chest was submerged in the water. Weird. Does anybody know if a hysterectomy and possibly removal of ovaries would stop it getting worse? I understand that it won't stop the current pain I'm having but will it stop it worsening? With it being all over the place I presume I can't have it all operated on. Thanks for any help on this. I'm very scared and fed up.
Ovary removal stop progression? - Endometriosis UK
Removal of ovaries is incredibly drastic, damages your health in the long term, and shouldn't be done unless absolutely everything else has been tried. All endo tissue also has to be excised at the same time. Do you have evidence that endo is growing in the places that you mention?
If you are having palpitations this would warrant a trip to your GP I would think.
The nodule in my vena cava can not be explained. Nobody knows what it is. It hasn't changed for 2 years though so could be nothing. I've had scans but. Irving else shows up. I don't have evidence that endo is in these areas but I had all the symptoms and I've had so many tests and nothing else is showing up. I've recently had ECG's, echocardiogram, stress tests for the palpitations and shortness of breath and all ok. Any suggestions?
I have sinus problems and head rushes as well as a blocked sensation down my left side of sinus area and neck. Difficulty swallowing at times, chest pain and pressure, pronounced heartbeat- particularly after eating, popping sensation under rib cage, fatigue, dizziness etc. I had stage 4 endo which was excised 5 years ago and doesn't seem to have returned since. That was all on bowel area though.
Hi, it might be the worry. I'm not saying you don't have endo, but the chest pain e.t.c. sounds more like anxiety and stress. The more scared you feel, the worse it would get. Do you think that might be what's happening?
Another lap would give you a proper assessment of how much the endo has spread. That would either put your mind at rest, or give you the basis for making decisions about further treatment.
I agree a lot of it does sound like anxiety and stress but why would I have pain right down my left side from abdomen to head? Tender scalp and ribs, pain when lying on my right side and the pain when in water for example? I was sat with family one evening earlier in the week and I got a horrible pain in my chest and the shortness of breath is almost every day with the sinus pressure.
I'm starting to think I might need a lap but with endo being so rare in these areas I want to make sure I go to someone who is an expert in these areas. Not sure they exist in the U.K.?
If you are really stressed about it all, I think you could be getting pains like that, just from all the tension. Maybe better not to assume the worst but try to keep an open mind before you can get further assessment.
If you look up your nearest specialist endo centre, you can ask your GP for a referral. Check the BSGE website
Thanks for your reply. Will the GP refer me so I don't have to pay privately? I have health insurance but it doesn't renew again until September and I've used it all up and already spent a fortune on private care.
I really hope it's anxiety, and I'm sure some of it is but there are certain things that have gradually got worse over the last few years that make me think it's endometriosis. The pain can be quite bad at times. I now struggle to sleep on my right hand side due to the chest and shoulder pain.
Just wondering how old you are? These symptoms sound remarkably similar to many other women who are going through perimenopause. Its worth looking on a peri site. Doctors do not understand the symptoms of it even though thousands of women have the same symptom!
Thanks. I'm only 29 but my mum went trough the menopause early- think she was in her 40's.
I've recently seen an endo though, should he not pick up on that?
I'll look into the symptoms. Would that cause the chest pain though and weakness feeling?
Peri can show itself in so many ways. I have been in a and e with chest pain, had all the tests ecg, etc but all clear. I suffer severe anxiety which is a peri symptom but which also brings numerous other symptoms with it including chest problems! You do seem rather young to be peri menopausal but it has been known to go through it at a young age. Worth asking the doc though!
Try serrapetase. It has really helped me. One polyp fell out of my uterus on its own after 3 months of taking it. But it disolves legions. And makes me feel so much better about what is going on inside, its scary because you cant see.
I have had both my ovaries removed, two years apart, each time it was unavoidable, first time because they found one was engulfed by a large dermoid cyst and second time because they were unable to save it while removing a large endometrioma whichhad caused me a great deal of pain (I have stage 4 endo too). In my case my symptoms HAVE stopped, BUT, I have a colleague who had a full hysterectomy (ie ovaries too) and she continues to have real problems with the endo pain, so it’s definitely not guaranteed. The hormones are protective of our health in so many ways, so they are very reluctant to remove them if it can be avoided. I’ve been on hrt since my surgery, but other health issues have flared up thanks to the surgical menopause I’m afraid! Are you being seen by a specialist endo centre? I had a poor experience with general gynae, but the situation was totally different at the specialist centre.
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