What happens next?

[Christel]

Can you give me any guidance please.

I had an internal scan which showed I have endo & an endometrioma that needs removing.

My first hospital appointment is in 2 weeks.

What happens next ?

Thank you .

[little_fins]

Hi Christel. I am replying as we share the same name,just a different spelling! When I got referred to hospital with suspected endo they did a laparoscopy to diagnose and said if suitable would laser the endo there an then. Sadly mines invasive so I need it physically cut out but they try less invasive methods first. Does it cause you symptoms?you could consider the mirena coil to control pain and heavy bleeding.

All the best

Crystal

[Christel in reply to little_fins]

Thank you.

I don't really want the coil . My bleeding is only heavy for 3 days but then I have spotting for about a week after that.

The symptoms I have are cramps for about a week before menstration then extreme pain for 3 or 4 days. Usually I will be bed ridden for the first bleed day.

I have painful legs too.

I get terrible lower back pain for at least half the month .

I feel very tired a lot specially if I have to walk up hills or stairs . But I am very fit . I had my blood tested for all sorts of things & no problem other than a little iron deficiency which has been sorted now but the symptoms are the same still.

It is such a huge emotional thing for me still because I've been complaining for ever & no one took me seriously. I still keep crying about it.

Thank you x

[Impatient]

Well the coild stopped all tthat for me, so if you haven't tried it yet, the very best time to have a coild properly fitted will be when you hve surgery to remove the endometrioma, so it is definitely worth giving it serious consideration.

It is much easier to have removed than put in, and if you get it put in while you are under general anaesthetic it's by far the very best thing way to get it put in.

It does need to be left in for about 5 months to get going, but once it does, it stops the cramps pains bleeding periods, bleeding at ovulation, and does wonders for endo symptoms.

It doesn't suit everyone, but it is scertainly worth trying, and especially if you can get it put in during an op so much the better.

As for procedures: next step is to see a gynaecologist to discuss the results of teh scan and what you want done during the surgery.

It might be a case that the endometrioma is wrapped round an ovary, so you decise do you want them to remove the ovary too, or try and clean up and cut away the endometrioma from round the ovary if that is where it is, it might just be attached with a stalk and sitting some way distant from the ovary. You'll possibly know from what the sonographer told you.

Then of course you can discuss what your future plans are?

Are you still intending to have a family or not?

If you are not and they find your fllopian tubes blocked then those might want to come out too. Or you might want them checked to see if they are still clear tubes and capable of carrying an egg from ovary to the uterus in which case dye can be squirted through the tubes to check they are still working as they should be.

You might want to make some plans about what kind of work you want done on any endometriosis that they might find. Or whether you want adhesions or scar tissue cut back as much as possible or only what is becessary for the operation.

If you are finsing sex painful or smear tests painful then again you might want the surgeon to check the outside of the cervix and vagina for signs of adhesions there that might need cutting back. They will regrow in time, adhesions always do grow again.

So basically the first appointment with a gynaecologist is to match up a plan of campaign for your particular circumstances. We are all different, some have finished having babies, some wtill want to add to their families some already know they cannot naturally conceive but might be considering IVF, some ladies just want to be rid of pain of endo regardless of what is removed inside.

The surgery to remove an endometrioma is usually through keyhole surgery, but if that tumour is in the space between the back of the uterus and in front of your bowel, it may mean you endo up having a big hole surgery called a laparotomy and this will require many more weeks or months of post op recovery, so you may decide during a discussion with your surgeon that at this stage if it is too awkward to be removed along wth any endo just by keyhole that you let them do as much as they can by keyhole but not go further than that, or you might decide that you can miss a family summer wedding and a summer holiday and instead give the go ahead for a bigger op if the surgeon thinks that would be better for your endometrioma removal.

Let the surgeon discuss what he wants to do in an ideal scenario, then consider if you are willing for him/her to do all they can or whether you want to put some limitations on the surgery, in which case say so in writing, and decalre your restrictions on the operation consent form and sign and date the additional restrictions.

Don't agree to start any medications right away, find out and write down the names of any drugs he wants to put you on before AND after you hve the operation, then pop back on here and we can give you the links to any patient advice leaflets so you can do your homework before deciding whether that drug is something you want to have in terms of treating endo.

Regarding the surgery, after discussing it with your gynae surgeon and deciding to go ahead with an operation, you will be called in to have a lengthy checkup with a gynae ward staff nurse, called a pre-op, this is where your medical history is checked, your weight, height, leg size measurements taken for surgical stockings which you wear during and after your op to stop deep vein thrombosis from happening. and perhaps having a blood thinning drug the night before the surgery to stop clotting DVTs from forming.

Its a bit of a jab in the thigh, that one, but could save your life so certainly is worth having if they consider you are at risk.

The op itself if a lap op is not a huge affair, but recovery tie varies depending on what you had done inside, 2 weeks to 8 weeks is roughly the recovery time.2 weeks for the most basic look around and diagnose, but the more you get done the longer the recovery.

fter the op, the most pain will not be from the op but from the trpped gas they pump into you so they can see round your tummy inside. It gets everywhere and it hurts, and the quicker you can shift it by farting it out or belching it out the better you will feel. Don't be shy about making noises, trust me the quicker that gas gets out the better for you.

any questions on any of it just ask us.

Loads of us have been through laparoscopies and quite a few have had the big hole laparotomies too.

Packing for hosp should include wetwipes to clean up the skin from the disinfectnt stains they use on your tummy and lower portions. They are super useful to have with you.

Clothes you don't mind getting mucked up with the stain and bleeding.

Hve sanitary towels at home as tampons can't be worn and you will probably hve some post op bleeding down below for a few days.

Wear comfy clothes loose over the waist as one of the keyholes will be right below the belly button and you will be a bit swollen fter the op, from the trapped gas if nothing else.

Avoid any foods and drinks which add to the gas issue. No fizzy pop, beans, cabbage, sprouts etc. Some pain killers can bung you up, so have lactulose or other meds for dealing with constipation while your hurting to do anything, the lst thing you want is to be straining and hurting by going to the loo.

The pre-op staff nurse should give you advice leflets about how to prepare for the op in anycase.

Please don't panic, the op date might tke quite while to arrange. It could be aa long wit or it might be within month. it's hard to judge these things.

Certainly give plenty of thought as to what you would like the surgeon to do while you re under general anaesthetic nd wht you definitely do not want to be done if at all possible.

Obviously if the endometrioma turns out to be sinister then you might want to tell the surgeon that if there is malignancy then he can remove whatever needs to be removed, but if not then you might want to preserve your fertility as a top priority, or you might want endo to be attacked as a top priority.

Good Luck and don't be afraid to ask questions here or from the gynae surgeon.

[Christel in reply to Impatient]

Thank you so much. My vagina tilts back & if I wear them I get rectum pain. Odd I know.

I can't wear tampons, they hurt. I have some pain with sex, it's difficult . My hubby is very big & my vagina is quite small . We don't try often but it had not caused problems at all. I'm very lucky .

I don't want children .

I don't really understand the coil so I will do some research .

[little_fins]

I had the mirena coil and it really helped with the pains. I get lower back and down legs too.prob with me is I have 3 lumps of endo grown through into my vagina so the coil irritated this and gave me other problems. But it's worth a try still as everyone is different. Mine was fitted under general anaesthetic when had surgery and removal was no prob.