Have been referred to gynae with complex cyst on ovary “due to suspected endometriosis”. Am awaiting results from CA125 but not expecting it to be dramatic (but who knows!!).
I’d like to prepare myself for what to expect at the appointment and what they’re likely to recommend for next steps. I know the only way to diagnose is laparoscopy but is it possible/likely that they’d rather wait to see how things progress instead?
I am in some discomfort month round but not stopping me from living my life. However, am often tired and periods are horrific. Am 40.
Thanks!
x
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meanie303
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So generally at a first appointment they'll ask your history, when symptoms started,what they are, have they progressed. What have you tried etc. They should then do a manual exam to feel for any nodules etc.
They should then give you some options, some do try and delay a lap, but as endometriosis is progressive this is counter intuitive as the delay can mean things are worse than if done straight away. If they do try to delay it you can request it. Also if your in the UK you should only be seen by a gynaecologist who has a specialist interest in endo, its a requirement on the NHS /NICE guidelines.
Oh and a heads up on the CA 125 test. This is an inflammation marker test and endometriosis among other non cancerous things can raise this. So if it does come back high or anything try to keep that in mind.
Thanks so much for your response. I’m seeing consultant with endo specialism so that’s a good sign. To be honest I’ve not had a long history of ups and downs (always had nasty periods but thought that was the standard). Last 12 months have been worse and thought I was perimenopausal so went to ask about that and a follow-up ultrasound found a cyst. I guess as I have not got a long painful history maybe it isn’t so clearly endometriosis... dunno. Also I’m older than some of the women here and have my babies already. So the baby making equipment is not so critical to me these days! Thanks again for your response!
That's great that your already seeing the right person.
It can be more difficult to get an endo diagnosis if you symptoms are more subtle it could be worth keeping a symptom diary between now and your appointment, include anything even if you're not sure it's related as some symptoms are less obvious like fatigue. Think about how you'd describe the pain, and what remedys you've tried/use. I.e. period cramping; shooting and stabbing sensations used hot water bottle and took x painkillers. There are apps/ downloadable forms which may help you with this. You may be surprised once you start noting it all down, how much there is to actually report to the gynaecologist.
Also as you've said that the baby making equipment isn't so critical. Just an FYI that a hysterectomy isn't a cure for endometriosis, (if this was what you were eluding to) it can help some women, but others it doesn't.
When I had my first appointment with my Endo specialist I typed up a “period” history. 20 odd years worth of everything that had happened, previous surgeries, contraception etc. pain, bowel issues everything I could think of. He took a good 15 minutes reading it and asking the odd question but straight after was right we’ll get you in as quick as possible and see what’s going on. Often we have these appointments and we get side tracked and go off on tangents when trying to get everything in. It might be an idea if you do something similar. Good luck xxx
Thanks! I’m a bit concerned I’ll only have a few days worth of notes BUT my primary reason for referral is the discovery of a couple of cysts so maybe I’m halfway there? Who knows. I’m really asking for the impossible which is some idea of likely pathway after the appointment and I guess we’re all so different that it’s hard to say! I was mainly wondering whether their approach is more likely to be aggressive if I no longer need a fully functioning uterus.
Also I hate pelvic examinations (so unusual!! 😊) and at the time of my appointment I’m due to be on my period 🤢.
I’d still do a short history. If you still have your ovaries you may still be producing oestrogen which the Endo will use. I was still having slight bleeding for 3 weeks after my hysterectomy and he had to do an internal to see how it was healing so I wouldn’t worry too much. I know we think it’s horrible but they will be used to it. I suspect they will want to at least go in and have a look. I was in the menopause but the Endo/and adhesions were still forming. So saying your womb isn’t functioning should make no difference to the diagnosis. I discovered I had adenmyosis on my 5th laparoscopy when he advised that if I was getting any more symptoms it would time for the hysterectomy. Two years later there we were. A good surgeon should have the discussion with you first as to your wishes. In hindsight I wish I’d had the hysterectomy on the 5th lap instead. Even though I was menopausal I still had this belief I should keep my womb/ovaries even though I was 48. Good luck with everything ❤️
CA125 is not a reliable diagnostic marker. It can come back negative and you still might have advanced endometriosis. It's usually high with endometriosis, but not always. Sometimes it's high and you don't have endometriosis. So it's not as reliable as you might think even though physicians are taught to prescribe it as a diagnostic marker.
An MRI or hormonal treatment might be solutions offered before a laparoscopy.
Just make sure the consultant is a highly skilled and experienced endometriosis excision surgeon by researching him in-depth online.
Thanks for your reply. I took a look at him online and he looks like a specialist in endometriosis so hopefully all good there. I think my confusion stems from having what I feel to be less severe symptoms than some people here seem to experience but also observed complex cysts. My pathway to being referred seems to be slightly different so far. Add in that I have had my family I just wondered if that meant they would take a different approach. To be honest it’s just me being impatient. I’m very very bad at waiting and not knowing. So this whole experience is going to be a period of personal growth for me!!! 🤣
No, saying they are a specialist in endometriosis is not enough. Saying they have undergone laparoscopic training isn't enough. You have to look for the word "excision" among his skills, find positive reviews and get confirmation he works with a team. This is what I do when I have to select surgeons to include in my list.
You might find some of the information on our website helpful, in particular the page on seeing an endometriosis specialist endometriosis-uk.org/seeing....
One of the other replies mentioned keeping a symptoms diary, this is a great idea, here is a template one that you may find useful endometriosis-uk.org/sites/....
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