How to get the most from a new gynaecologist appointment..

[EmmaIsConfused]

I was under gynaecology, they said it sounds like I have endometriosis but they discharged me without properly diagnosing due to the pill helping with my symptoms. I now have nexplanon (contraceptive implant) in and my symptoms are back worse than they were, because of which, I have been referred back to gynaecology at another hospital (I moved area).

How can I get the most out of my appointment?

Thank you ladies.

[Impatient]

nexplanon or bc pills are working on preventing new endo spreading from the uterus in backflow bleeding along the fallopian tubes - so keep on with that side of things. you will have to manage you periods from now on if you have endo to reduce or stop them.

It doesn't diagnose or remove exiting endo elsewhere in the body.

that's what the surgeon is there for. you need to push for a diagnostic laparoscopy.

It is the only way to check where the endo is growing, how big the lesions of growth are, how deep the endo is growing in to tissue and organs, and most importantly it's the only way to have the existing endo removed.

Existing endo cannot be killed by any means other than removing it .

The first stage of that uses lasers or diathermy to burn away the endo. This is great and very effective for shallow endo on the surface of things, but it doesn't work on deeper growing endo as the burning only reaches a few mm down and any endo cells deeper than that get left behind and can carry on causing a problem. For those deeper endo lesions the only effective option is excision surgery.

the reason surgeons don't do excision surgery right away is simply the time factor.

you can laser away a lot of endo in a short space of theatre time. Excision is much more laborious and there could be hundred of locations of endo.

For the majority of surgery cases the laser or diathermy is all that is needed.

But there is still quite a number of women who are still having trouble after that initial treatment and they are the ones who would then need the deeper endo excised, but by then in fewer locations.

Endo may only be a small lesion or two - or could run to hundreds and hundreds of locations scattered all over the place.

And not all of it will be painful. you can have severe stage 4 endo -with cysts and not feel any different. It can be found by pure chance whn you have an operation for something unrelated.

It is a bit of pot luck if the endo that is removed at the 1st operation happens to be the ones causing most pain - and therefor you get the most relief from pain afterwards if they are the ones removed.

If at the diagnostic lap op - your case is found to be a complex one, and something which will require much longer in theatre than you have been allocated that day, or is beyond the technical expertise of that surgeon, or requires the assistance of urology or colorectal surgeons too, then your op will be finished and you will then get referred to an endo centre where a subsequent surgery will be scheduled for you with the appropriate extra time and surgeons on hand.

1st appointment with a gynaecologist is usually with a general gynae who has minimal training in endo. their job is to diagnose and carry out simple endo removal. It is much less likely that they also have the expertise for complex endo surgery. So don't be too shocked if there isn't much done other than a look around equally you could be very fortunate and have your op scheduled with an endo expert surgeon and find the op becomes much much more major than you imagined it would, if complex endo is found inside.

I went in for a lap op to remove two suspect cysts. Expected a lap, and a couple of weeks or so recovery.

Woke up having had a laparotomy (big hole) , a whole heap of work done and 5 months recovery from the surgery.

so surgical results depend on theatre time, surgeon expertise, and what is actually found when they get inside you and look around.

Scans and bood tests are more to rule out other gyanae conditions than to rule in endo. but are an essential part of the journey to getting surgery, and appointments can take some time to come through.

Endo doesn't show up on scans, cysts will, and organs being stuck in the wrong location by adhesions is a clue that you may have endo, but they are not a substitute for surgery which maps all the locations (painful and otherwise) and how much damage the endo has caused in scarring and adhesions, it can also allow the surgeon to check the current state of your fertility prospects, are the ovaries clear? are the fallopian tubes still tubes? and an ova can travel along them,

so if future fertility is important then that is something also to raise or bare in mind when speaking to the gynae.

If you want checks like an HSG done during the op to check the tubes are clear.

you may also want to consider the mirena being installed during an op, it is by far the best way to get it put in, because it can be painful to have inserted unless you are knocked out. there won't be too many occasions to have the mirena put in under a general anaesthetic in your life time so it is well worth giving that serious thought if baby making is not on the agenda for the next 2-5 years.

If you haven't been able to have a smear test due to vaginal or cervical pain for sometime and find the speculum process too much agony - again this is something which can be addressed in the op.

So there is a lot to think about in regards to getting the most out of the operation, and that should be the guide as to what questions you want to ask the gynae.

He/She will ask you a whole heap of questions too about your menstrual cycle, bowel habits, pain symptoms, whether you also have constipation, bloating and ovulation pains which are all clues to endo being likely.

Take a list of questions you want to ask.

By the time you have waited to be seen, brain fog invariably descends and you forget what you wanted to ask about, so write down reminder words or full questions to jog your memory.

and you can make notes too- if you are likely to forget everything said to your in you 15 minute appointment.

There's a lot of ground to cover in a short time frame.

[JennyFishfeet]

endometriosis is quite common, but doesn't have an easy treatment. The pill will help mitigate because of the affect it has on periods. Speak to your gynecologist, if it is definitely endometriosis the best she may offer you is painkillers during bad periods... if the pain is unbearable or you want a final solution, then surgery is the only other route I'm afraid.

[EmmaIsConfused]

I've got the contraceptive implant in & I have liquid morphine for bad days.. unfortunately, bad days have been constant for over 2 weeks now, the pain is to the level where it's making me cry after I've taken morphine.