Endometriosis UK
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What pain does everyone else have?

Hi all. I have not been diagnosed with endo but have suspicions that I may have it.

My referral for gynacolagist has come through and I was wondering what they might ask while I'm there?

Do I focus on the one bad episode I've experienced with the run up to my ruptured ovarian cyst or since that and the general day to day niggly symptoms?

Can endo only be niggly after a "flare up" (do u get flare ups?) I just don't want to end up waisting anyone's time but also after the build up of events and signs and symptoms I had before the ruptured cyst i feel it needs to be persued.

My question to all is

Is endo generally severe Pain only?

Does endo have "flare ups?"

Are most people always in some sort of pain day to day?

Thanks all

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I’ve read that some people don’t even know they have endo until they have surgery for something else, so I wouldn’t say endo is just linked to severe pain!

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Hi Hannah 5198,

You might find our endometriosis information pack useful: endometriosis-uk.org/sites/...

The first time I went to a consultant appointment I took a pain/symptom diary and I also listed things I had already tried like dietary changes, exercise etc. I found it really helpful to have those things to refer to in the appointment as it is such a short window to get all the information across to them.

To start with, my pain was only during my periods and then gradually as the disease has developed I am now in daily pain and I do get flare ups where I am bed bound every so often however I have a friend who has stage 4 endo and didn't have any of the signs. It was only found when she was having difficulty getting pregnant so everyone is different.

There is lot's of different information on our website: endometriosis-uk.org/inform... and we also run other support services through our helpline and local support groups if you ever need anyone to talk to.

Best Wishes,

M Mary, Endometriosis UK

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Thanks I'll take a look

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Hi! My gynae asked me about my period in general so I kind of told him what I thought was important (just start from the beginning) then he asked much more specific questions which I just had to go through and answer. If it’s a specialist, they know what info they need off you so if you don’t give it to them, they will ask more direct questions to get the info they need. Stuff like, do you have pain when having a bowel movement/urinating/during sex/what level is your pain/where is the pain/what’s your flow like/your cycle length etc etc.

I’ve heard others talk about flare ups but I wouldn’t describe myself as having them. I get pretty much daily pain on some level. Starts about a week before my period, continues on my period and then carries on after for a week or two. Gradually it gets less and less until it’s time to start up again!

Best of luck x

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When i saw specailst they asked about my periods and my mood swings and then aaked me were exctally were pain was. And pain is diffent for everyone some times i can have pain for days on end then nothing then get flear ups or just little bits of pain

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I have no pain, and I have stage 3 endo. I was experiencing infertility and had an exploratory lap done to find out why I was infertile, and they found my insides riddled with endo. So it’s true, the level of endo doesn’t always equal the level of pain.

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We are trying for a family and it's a fear of mine that I might have fertility problems. All my problems have got worse since coming off contraception.

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No not all of us are in pain. My sister and I have little pain most days no pain and yet we both have stage 4 endo. It can be a silent disease and then when things are built up too much in there and usually when a cyst has become too big, we will start to get pains dull period type pain sometimes stabbing pain. Best to have it diagnosed, have excision surgery then start new clean diet to keep it suppressed. Good luck Hun xx

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