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Endometriosis UK
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Newbie- suspected endometriosis

Hi, I'm new to this site and found it like many others looking for answers to the symptoms I'm experiencing. At nearly 47 years old it appears I'm quite old to be suffering the symptoms associated with 'endo'. I had an endometrial ablation almost 2 years ago due to suffering from very heavy periods and apparently I have a couple of fibroids too. Recently the pain I suffer just before and during the first 24hours of my period have become so excruciating I can barely breathe. Always under my ribs and into the left side of my back, along with what I'd describe as the usual period pain in my lower abdomen and back. The sensation is like really severe indigestion coupled with burning but yesterday I got a pain so severe between my ribs I actually couldn't breathe and any movement was crippling. I assumed I'd pulled a muscle in my back but having searched on the internet I found this kind of pain going up into the ribs during menstruation is quite common and can be linked to menstruation and endometriosis.

I will be going to see my GP but want to go armed with as much info as possible as it seems there is little understanding of it here in the UK?

I'd like to know if the pain I'm experiencing is what I suspect and is there any successful treatment out there for it? Or have I just read too much on the net and jumped to the wrong conclusion.

Any advice would be welcomed.

J x

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10 Replies
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Hi, I am sorry you suffer from so much pain. I, too am nearly 47 but still suffer pain from Endometriosis.

I think what you could do while you are waiting to be investigated, try to stop periods. If your pain is only around the time of periods, then in theory if you don't bleed, no pain.

I have stage 4 and had operation last year to remove extensive endo, including 3 nodules. Unfortunately, endometriosis is on diaphragm and liver which is quite rare, so these are not removed. I have Mirena and on mini pills to suppress the endometriodis but still bleed! And often in pain nomatter bleeding or not.

But, if I still had periods, I will be in very bad state and it will make endometriosis grow.

Good luck, get reffered to a endometeriosis centre, find the nearest or where you want to be referred and ask. Or, you might need to be seen by a local gyneacologist first but evrntually, if you ask for it, you can see an endo centre specialist.

The best thing is to have knowledge yourself! Good luck!

2 likes
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I totally agree to stop periods. That's a helpful start

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Hi! I think I might have endo on my diaphragm or in my lungs, how have you been diagnosed with these?

Sx

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Hi,

I haven't been diagnosed yet I'm trying to get information about it all before I go to the doctor as dint eant to be fibbed off. I'm also a bit scared of what it might be. All the symptoms I suffer coincide with my period even though I don't actually bleed anymore after the ablation.

Hope you get sorted xx

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During an excision surgery. My consultant looked around my inside with a laparoscope so only visible sites are confirmed.

I suspect there are more endo than what she saw...

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Hey, that seems to be a recurring theme with endo, from every site I've been on people have been misdiagnosed or fobbed off. I hope you find someone who takes it seriously and gets you fit and well. Xx

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Thank you very much!

Hope things goes well for you, too! xx

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Morning!

I too get dreadful pain under my rib cage on both sides. Yesterday I had a lap in Preston and the doctor said he could ny see anything on those areas and because of that I am also going to visit a digestion specialist and get scans. I get awful sore throats and ear aches due to heartburn from tummy being squished.

Good luck love!

Sx

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Thanks hon, I hope you get sorted. I'm scared to take it further as afraid of what it might lead to. xx

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I ended up collapsing two days after the lap, 4 days of being robbed off with gas pain but it was an infection in my gall bladder... ten days later I’m home and almost back to normal though physically tired....

..... grrrrr! Doctors fobbed me off.... again.... finally a new set of eyes and it all make sense....

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