I have just been for my first gyno appointment where they have said I have endometriosis once again.
They want to have me in for a laparoscopy and I have 6 weeks to decide on this.
I have 2 questions sorry!
They want to do a laparoscopy where they diagnose and remove all in one, how have people found this?
They also want to insert and put me on the coil to try and reduce symptoms, I am currently using the injection which helps but not enough. Has anyone found relief from the coil?
Thanks in advance x
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Anon1846
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Hey, sorry I am of not much help. I had a laparoscopy last month, was told that if they find any endometrial tissue they will remove it with the cyst. However, they found that I have advanced endometriosis so they couldn’t follow through with the whole operation and I need a specialist gynaecologist to have another operation. So just be prepared that if it is at my stage (which I really hope it’s not!) they may not be able to remove all of the endo on the first operation.
But I would also like to know more about the coil. Could someone also give me a message about this. Thank you x
Thank you! I wobt hold my hopes up too much on that then as I think it is quite bad. I'm going to physio for my bladder endometriosis as it is expected to be widespread due to my symptoms
I've had the laparoscopy to diagnose and remove all in one go. It's definately better as it means you don't need to wait for a second laparoscopy and hence have two recovery times. It's actually the best route if your specialist is happy to do it.
But there are a few things to consider:
1. Your recovery could take up to 6 weeks depending on what they find and remove, will that be okay? Normal diagnostic laps are about 2 weeks, average recovery time after removal of endo is about 4 weeks.
2. Does the surgeon specialise in endo and will perform excision surgery? It is worth checking. Excision cuts out all the endo so less to regrow. Other techniques for example are ablation, laser, sanding, diathermy; these do remove endo but just the top layers, it is quicker to do and doesn't require much experience but it does leave deeper endo so regrowth is quicker. I had excision and would definitely recommend that, recovery is longer but it's worth it. An endo specilaist means they'll actually be able to remove the endo in even the hard to reach places, just double check this.
3. It can take up to 4 to 5 months to find out what your new "normal" is, would you want to wait and see with / without hormones? My surgeon doesn't do hormones of any type with any of his patients until about 6 months after excision as he says this helps them to see what their new normal is and how they want to manage without the added complications and confusion of managing the side effects of the hormones, which can take up to 9 months with a coil to get used to.
4. Be realistic and expect your symptoms to reduce by about 50%, you may need to manage the remainder of them with other medication but then again they could be manageable without. My personal opinion is you won't know what symptoms are endo that you can manage post surgery and what are hormone side effects.
5. If your coil is added via lap - I haven't had one put in but have heard from others that it's quite difficult to convince a GP to refer you back to have it removed or remove it themselves.
6. Really think about what you want to consider and what quality of life you want after your lap - it isn't a cure all and won't sort all your symptoms, so think about what ones you really want reduced. What are your aims / expectations after removal of endo? Mine was no hormones or painkillers so I've gone natural with aromatherapy and massage, physio, core focused exercise and looking into acupuncture. I don't want more synthetic stuff in my body because I'm sure that didn't help - the side effects were just awful!
7. Accept that things may be fine after or you may require more surgery with or without hormones - endo is weird - it can regrow at different rates in different people and even comparing before and after. You can also have a little bit of endo and a lot of symptoms or a lot of endo and very little symptoms so it's difficult to tell always what to do next.
It's all down to personal preference that's why you've been given time, so have a think. Perhaps have a chat with a friend / relative / partner about everything, and take them to your decision-making appointment so they can listen and ask anything you've overlooked.
I've noted down my experience pre and post diagnosis, feel free to have a read, it may explain my take on the above.
I would try to go straight to a specialist, most gyneas don't have the expertise to remove endo. It happened to me, lap done, wake up, Dr says, oh, yes, you have it. Sorry, but I can't take it out. Like ??? WTH
Really? I should have really been referred to a specialist in that area as they suspect it on my bladder and bowels and I am also starting physio for my bladder endo. They have said they will remove it but they may not be able to get everything and they cant do anything with the scarring. Had you originally been told they would remove it at the same time?
The specialist that did my operation was very good. The operation took almost 8 hours to complete. The Dr cut out a bowl full of endo out of me. As it grows onto the organs it is very difficult to get it all. I have been on medication since the operation to curb the growth of the endo, I will have to keep taking it for another 5 years the Dr says.
Have you had a cyst with endo aswell? Sorry for the bulk of questions however I have managed to get a lump around my left ovary however it grew very fast and it's very painful but my ultrasound just under a tear ago came back clear
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