Hi everyone, just new here after being referred to a gynaecologist today. GP thinks l may have endometriosis.
I'm not so sure, I've had pelvic examinations and 4 ultrasounds (internal and external) which have all come back normal. I don't get the typical endo symptoms.. my periods aren't particularly painful. I usually just get bad back pain, and aching (and sometimes sharp pains) in the pelvic area most days. I do get an excruciating pelvic pain (what almost feels like contractions) sometimes when I run which triggered me to first see the GP. And also get bloated, feeling very fatigued the last few months and periods getting heavier.
Has anyone been referred for potential endometriosis without having the main symptoms? I feel like I'm wasting the appointment when there's so many people who struggle to get them. I know something doesn't feel right but I feel like none of my symptoms are bad enough to be endo...
I've no idea what to expect at the appointment either and what the next steps are, so any advice would be much appreciated!
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pygmypuff
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As Persil has already said, Endo cannot be normally be seen by ultrasound. Sometimes a vaginal probe may notice some, but it all depends on whether the endo is in range of the probe, and is also the type of endo tissue that can be detected in this way (there are different types of endo). You also say that symptoms have been getting worse, so if I was you - and especially if someone is taking you seriously and referring you - I would grab the chance of an examination. However, please do read up on here, on the 'Endo UK' site (see info at top right of this page), and in any 'GOOD' endo guides you can find. AND: You do need to be seen by a gynae who is an endo specialist, not just an average 'lady-bits' person.
Also, the first internal operation should only be an inspection - they should not remove tissues until a full check and analysis of the entire cavity has taken place and you have been told the findings. Random removal of tissue, while often missing the worst areas or types, often occurs, and is useless, as it may grow back in few months (as happened to me).
I'm in my 60s now and finally free of periods and pain, but I spent much of my adult life either suffering monthly agonies, or forced to take the pill (even after my late husband's vasectomy ... even after he died!). All of this was not alleviated until my early 50s when I had a mirena coil fitted - which worked for me until I was post-menopause.
I had the vaginal ultrasound which came back normal but that's good to know that endo doesn't always show up on these, I didn't realise. I feel guilty about taking the appointment when I know so many people have symptoms far more severe that me but of course would like answers and relieved that my GP takes me seriously, so on that front I know I'm very lucky. I assume at the moment I've just been referred to a typical gynaecologist as they are unsure what my symptoms may be.. but then assume I would be referred to an endo specialist if the gynae also suspects endo? not entirely sure of the process?
I wasn't aware of that for the first internal operation, so thank you, that's really helpful. I don't think I'd know about these things without this community. I'm sorry you've had to live with so much pain, I wish there was more that could be done for everyone here.
I had bad periods when I was a teenager , then went on the pill and all way good. Now no symptoms apart from bloating and...infertility. I have been diagnosed with severe endo.
If it's not endo then hurray ,but what if it is? X
I never realised how symptoms can come and go, and everyone seems to experience endo differently. It is true what you say.. maybe just good to rule it out and if it is, then its good to know so I can try and deal with it
Don't feel guilty! The pain - or lack of it - with endometriosis is not always a measure of how bad the endo is. I had dreadful pains, but not much actual endo - just that it was in awkward places - while some women have little pain and the endo can be bad. Also, as I think I've already said, don't let them remove tissue on the first investigation. If you have endo in dodgy places, or some of the more awkward types of tissue, then you will need referring to a good endo specialist (preferably a NHS BSCG team. This first team should concentrate on checking where the endo is, how much, what type - if they can tell that... etc.
Also check out any messages on here by Lindle, she is an amazing 'Endo Warrior Woman'.
I would accept help, it’s important to look into the symptoms, not a waste of time at all.
I went for a while with pain and sickness including bloating and back pain. My GP put it down to IBS initially. Later I saw gynaecologist to investigate spotting, but scan was normal.
Over a couple years the pain increased, I was tired, some severe pain, but periods were the same. The GP did a scan suspecting intestine problems. Because the scan showed fluid near bowel I had another referral to gynaecologist. She said it could be endometriosis, but there was no way to know for sure without doing an operation (and testing tissue).
I had surgery- laparoscopy. I’m pleased as it confirmed diagnosis and helped symptoms. I was offered hormonal treatment to prevent it coming back, which didn’t suit me.
I was told the tissue can grow in lots of places, I mainly get digestive problems. I’m on pain killers and fibre supplements from GP. I have normal cycle, and pain in other places, not just period related. I was told mines extensive but womb’s normal. It can definitely be different for people. I hope you get on okay.
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When is enough , enough?
really had enough!!!!!
Having a bad day 🥺😔😒
Had Enough 🤦🏼♀️
Does anyone else gets really bad trapped gases that are causing lower back pain?
