what will I learn at my check up?

[Hen85]

hi all! I had a laparoscopy in November. before i left the hospital, I was given a very brief description of what they found. they removed an ovarian cyst and treated endometriosis. he said everything was "stuck together" so they separated everything. since then, I've been to my GP to see if I can find out more... like the severity of my endo, where it was located and if its likely to effect my fertility. my GP didn't have any notes on my op so I filled him in on what I knew.

my appointment letter has come through for a check-up with the consultant who performed my surgery. it's in mid march.

I'm hoping some of you can tell me what to expect at this appointment and am I likely to learn more about the severity of my endo?

[Tboag]

Hi, have they put you on anything? Good luck at your appointment,

[Hen85 in reply to Tboag]

nope. haven't put me on anything. they always recommend I go on the pill as they say it will help with the pain but I'm not keen on this idea.

[dolcevita]

Hi, I'm in a very similar situation as you. Laparoscopy in Dec, cyst removed, i was told they found endometriosis, been given the pill to take back to back until my appointment in march. I'm not sure what's going to happen at this appointment. If they are not doing any kind of ultrasound or xray or anything, how do they know what the status is? Since the lap I've been reading a lot (as you do...) and have changed my diet to try to help as much as possible against endo. The pill obviously stops the bleeding but still don't know what the follow up appointment is going to show and how do we move forward from here. x

[Hen85 in reply to dolcevita]

nice to hear from someone in the same situation as me. yeah I've changed my diet a little bit too... I've cut out bread and pasta and eating loads more fresh veg and drinking loads of water. not sure if it helps but defs minimises bloating which makes me feel better about myself. I was offered the pill in the months leading up to my op but haven't been given anything since, so I had some very painful periods following my op but the last one wasn't too bad. yeah I find it odd that there's such a lack of info on what to expect at our appointments. if we knew what to mentally prepare for, we would be less anxious goin in there. I'm assuming there's gona be some kind of examination. hopefully we'll get told in more detail about where we had a build up of endo and how severe or mild it was. people ask me all the time and are surprised when I know so little about the details of my own body!

[Starstellar7]

You really need to supress your periods as endo does come back quite quickly. Did you have excursion, where they cut out the lesions? (You probably don't know.)

I find this so frustrating as I had a similar op in May, came of the pill TTC and now as of January its back. I am now on more hormone treatment. So basically square one.

Some of these Drs are not really specialists, I don't think they should agree to operate on us unless they are doing the utmost best to remove and prevent reoccurance.

I hope you are fine and it is not coming back for you. But please get a specialist in endo as soon as possible.

xx

[Hen85 in reply to Starstellar7]

excursion? sorry Im not even sure what that is 😟 plus I honestly don't know much about what they found. hoping i'll get told at my check up next month.

so, are u saying that being on the pill suppresses the build up of endo? from what my GP said, I thought he just meant it would minimise pain, so I thought if I manage the pain without the pill, then that's up to me but if it can slow down the regrowth of lesions then I would reconsider.

I'm pretty sure the consultant who did my op is an endo specialist. I looked him up online and he seems to hav been recognised for his work with endo so I feel quite happy that I'm with him, only prob is, I've only met him once (about half an hour before my op) but my check up is with him so I'm hoping I'm in good hands.

[youngsufferer]

I'm also in a similar situation to but still waiting to find out my full results and discuss options. How badly I'm affected by endo and if it will affect my fertility. It's frustracting the lack knowledge everyone seems to get and the lack communication there is. Best of luck for your next appointment!

[Hen85 in reply to youngsufferer]

best of luck to you too!

[Starstellar7]

Hi, excursion is when they cut it out. It's been shown to be the most effective surgical treatment.

The pill suppresses it as far as I have been told. Basically the fewer periods you have the slower it grows. I've been put on visanne now which is a progesterone tablet as I was in pain throughout my cycle. It seems to be helping a little although my periods haven't stopped yet. I've been told they will after a few weeks. Some people seem to think that this can shrink any lesions/implants as the progesterone dose age is supposed to be a bit like pregnancy.

I hope your gynae is a good one, my GP recommended my last gynae who did the op but I'm not convinced after a third opinion that they did the best possible treatment on me and I'm pretty upset because further surgeries can cause adhesions/scar tissue and more pain. My current gynae seems to be very knowledgable and backed up everything I had found out online. Go on youtube and have a look there are some interesting documentaries about how it is being treated. Apparently if its cut out it doesn't come back to that area, whereas if they laser it off it can reoccur. I'm only sharing what I've read. There are so many stories out there!

Good luck with it and have a list of questions when you get your appointment.

X

[Hen85 in reply to Starstellar7]

thank you for your reply. I'm quite new to all this and trying to get my head around it all. I'll ask at my checkup whether they used laser or excursion as I have no idea. (isn't it crazy that u can have an operation on a very important area of your body but know so little about it... even months later! it's like they haven't got time to tell us!) thanks I'll defs have a look on YouTube at those documentaries.

[Starstellar7 in reply to Hen85]

Yes that's exactly it. I was in a situation where I was pretty poorly as my appendix was involved and I didn't know about the cutting it out treatment at that point. I assumed that they would (it was a private op) do the best possible job on me as it was at a very good hospital.

The thing I have learnt about this is that we go to our drs expecting them to have the latest knowledge and to be able to tell us.

The more contact I have with the medical profession the more I realise that we, the patient have to read up on everything and make our own informed decision. We have to ask the right questions.

Endo is a journey, at the start you don't understand that how it is treated at the beginning can have such an effect on the outcome. I knew I had this when I was 24 but was sent away after a painful internal examination being told I had a mild hormonal imbalance and to keep taking the pill.

At least I've had a diagonosis even if it took 9 years in the end. My mum and gran were never diagnosed and I am convinced they both had this.

I am going to continue to ask as many questions as possible.

The other thing that's annoying I'd the point they come and talk to you after your lap is when you are just not with it. If I have another lap I am going to write a list beforehand and make my husband ask for me!

Good luck!

[dolcevita]

hi all, the only thing they made very clear to me after the operation was that I could not have another period until my appointment in march. that's why they put me on the pill back to back. they did stress this out.

the way i understand endo is that some of the cells that 'produce' if you want to say, your period are outside you womb, when you are having your period, these cells are also bleeding, the blood has nowhere to go. When i had my laparoscopy they said as well as the cyst, i had half a litre of blood laying around in my pelvis. I imagine that was the cause of the deep pains. Which also brings me to another question. They say with endo you have heavier periods but if the additional blood these cells are producing have nowhere to go, why are the periods heavier??

but yes, you have to make sure you are on the pill and avoid having your normal period. I'm also on the no bread/no pasta/wheat free/glutten free.... or trying as hard as i can. you can only eat so much lettuce haha

good luck to all. this is such a confusing subject xx

[Hen85]

ooh I'm a little bit worried now as no one recommended that I shouldn't have a period after my operation. was this an oversight? or do different doctors hav different opinions on it?

[dolcevita]

I don't want to panic you. we might have different things. if the follow up appointment is in march, i guess it's only a month away and then you can ask. it seems odd as the pill seems to be the first step. but please don't panic as there might be a reason for it. let me know when you have the appointment. mine is 3rd march. maria x

[Hen85 in reply to dolcevita]

thanks for the reassurance. my appointments march 18th. i hope yours goes well! x

[Salperky]

Hi Hen, generally and in my experience, the follow up appointment will be to discuss what they found, what they did (if anything) and what the next steps are to help only. No examination or treatment.

Their are so many 'next steps' and as determined by where the endo us, how extensive it is and hugely on your gyne preference.

By stopping you bleeding, you won't have any new fresh endo for them to treat, just how to manage your pain from the scarring caused by previous endo (which is the problem and long lasting I'm afraid). Their are a few options to stop bleeding And I believe the pill is one of them which is why you were prescribed it.

Generally the gyne will send a letter to your doctors to let them know what they found and did and arranging a follow up appointment. Clearly they are very behind on their paperwork!!! Even so the doctor wouldn't know what action is needed until he/she receives the next letter from gyne explains the next steps which won't be until after march appointment.

It's so frustrating waiting, not knowing, worrying but it is just around the corner now.

I do wish you well and hope you get a good plan together in a March x