Laparoscopy Surgery

[abcdefg2020]

Hi! I have spent years and years asking doctors/GPs to help me with my pain with my period. They’ve been horrible ever since getting them when I was 12 (I’m now 23), they’re always heavy and painful and contraceptives haven’t helped at all and just made me bleed more

I was with a gynaecologist where I used to live and begged them for exploratory surgery to see if it is endometriosis but because my scans (both external and internal) came back all clear they always told me no. I am on Mefenanic acid and another one as well, as well as painkillers for the pain.

I go referred to a new Gyneacologist when I moved elsewhere and on my first appointment they literally there and then offered me the surgery without me even needing to ask! I’m actually so over the moon, I’m so happy as they actually listened to me! They said if they find any endo tissue that they’ll laser it off and that I may need to come back if it grows anymore BUT the one thing I am worried about is the fact that I had an ectopic pregnancy last year, when they went in and sorted it out (had a tube removed) they did said they couldn’t see any evidence of endo and that I had some adhesions on my bowel. I’m so worried they’re gonna go in and see nothing! Nothing that’s going to explain my pain at all. I’m so worried that they’re literally gonna find that everything’s okay, then I’m back to square 1 and just feeling hopeless :/

any advice or experience would be greatly appreciated, also anyone had bowel adhesions that are connected to endometriosis??

I’m so worried they’re gonna go in and see nothing! Nothing that’s going to explain my pain at all. I’m so worried that they’re literally gonna find that everything’s okay, then I’m back to square 1 and just feeling hopeless

I don't have the same medical issues but I can relate to this. I have avoided tests altogether in the past because I am too worried about them telling me it's nothing.

I'm really sorry you've been in all this pain for so long. I do understand how stressful it is getting a diagnosis when something is affecting you this badly. It's a lot to go through.

I hope someone with a bit more medical knowledge has some reassurance for you.

@abcdefg2020 I've had 4 laparoscopies for endometriosis and in my experience if it's there, they will find it!

I went in with suspected appendicitis at 16 and when they opened my up my appendix was fine but my bowel was completely stuck to the side of the abdomen with adhesions . This started the process of possible endo so I had another lap around 5 months later where they went in to diagnose.

I've personally found that when they laser off any bits of endo they tend to come back a lot quicker than if they cut it away (excise) so maybe you could ask about that?

After my first surgery I went into the gnrh analogue treatement which effectively eliminated you you into a false menopause for 6 months to allow your body to absorb the endo and stop your periods feeding it. This really helped give me a rest bite from the pain etc and it was a good 8/9 years before the symptoms were back severe enough to warrant another endo surgery.

By that time I had adhesions everywhere- bladder, bowel, ovaries etc! So they cut all that away and I'm still great 5 years on.

Also to add I have two gorgeous children (I'm now 35) which both happened naturally so please don't let the scare stories about conceiving frighten you as even with stage 4 endo I was ok. I know for some it's difficult but it's not a fore gone conclusion.

In terms of recovery from the surgeries you just need to rest for a good 2 weeks but after that I think k you bounce back Pretty quickly.

Best of luck 🩷

@abcdefg2020 oh and like you I suffered with debilitating periods from 13- doctors didn't want to k own and essentially prescribed mefemic acid like you have. It was only when I was in so much pain (clearly from the endo adhesions) that I went to A&E who suspected appendicitis that anyone took it seriously!

On average it takes 10 years to be diagnosed with endo; absolutely criminal considering the pain it gives you!

I have 2 children already which is why I pretty much begged them to just take everything out, I really don’t want anymore children and I also don’t want to be in pain any longer :(

they did find adhesions on my bowel last time but couldn’t see any endo BUT they weren’t in there for endo they were there for an ectopic.. just worries me so much that there won’t be anything there

@abcdefg2020 it would have been a general obstetrics surgeon who did your eptopic surgery, when you go in for your endo laparoscopy it will be a gynaecologist specifically trained in endo so if it's there, they will spot it! It's also possible your pain could be from adenomyosis which is endo inside the womb hence it not being immediately obvious when they went in last time. Surgeons will look at the thickness of your womb to see if you have it or not.

There are two ways to think about your situation. You could live in despair and anxiety going from worry to worry until you become so distant from yourself that you forget what the actual first worry was. Alternatively you could choose to be kind to yourself by acknowledging (maybe in words out loud ) how difficult a time it is for you and that you are proud of yourself for taking the time to reflect on the difficulty and just stop and say so. And the physical pain as horrible as may be is transient and if you tell yourself you won't be defined by this pain but crucially accept that physical pain is part of this temporary situation then your suffering beyond the physical can stop there. Remind yourself that you are putting faith in the doctors and nurses and you'll be in the hands of professionals who'll have seen this many times. Keep reassuring yourself every time you feel hopeless or worry about a future examination.

Im sorry but I think your doctors advised your wrong.

I've been through a lot of pain over the years, awful periods etc. I don't have children if that matters.

I finally went private and I was seen by the gynaecologist dr. Colomainen which I HIGHLY recommend. After discussing all my symptoms and the possibility of endometriosis, she explained that the only truly reliable way to diagnose endometriosis with 100% certainty is through keyhole surgery. Ultrasounds, she said, often won’t detect it unless the condition is very severe such as when everything is severely stuck or “glued” together.

So, Before my surgery, I underwent both external and internal ultrasounds as advised by her, and all results came back clear. But about a week later, during the keyhole surgery, endometriosis was confirmed. I even got to see the photos she took during the procedure, there were small bits and speckles spread throughout.
During the keyhole surgery they will or at least should look at many areas, I had that, not only uterus and that's it.

So, try not to stress:)

Wouldn’t the surgeons of seen it when they went in the first time for my ectopic ?? They said they saw adhesions on my bowel but that was it, they said they weren’t actively looking for endo BUT they did write a note saying they didn’t see any. The doctor I’m seeing now is happy to do another surgery to have a look as obviously they weren’t looking for it last time and my symptoms are still the same

thanks for advice guys, really do appreciate it. I’m worried that I just have all this pain and then they’re not gonna see anything at all

Hi guys just thought I’d update you all! I had my pre op appointment this morning for my surgery and an awaiting the date for it! I’ll be an inpatient there overnight (not sure why) for it and so I’ll be packing a bag and everything. Super happy to finally be listened to x

@abcdefg2020 amazing news!! Let us know how you get on 🙂

I do want to say, firstly, adenomyosis is not endometriosis in the womb. It is when the lining of the uterus grows inside the womb. Endometriosis is when tissue similar but not the same as the lining of the womb grows outside the uterus on different organs, but crucially not inside the uterus. Adenomyosis is uterus-specific and is much more easily detectable in a transvaginal ultrasound or MRI.

On a diagnostic laparoscopy, 50% of people find nothing (this is with an endo specialist). After that, it could be that their adenomyosis is diagnosed and they focus on just treating that, or it could be a referral to gastrology for a gastro condition. It could be a referral to a pain clinic or palliative care; it's not a bad thing necessarily, it just means they may have to keep on digging for another issue, and it may be another condition, or sometimes they just treat the pain. Don't let it put you off though, have the surgery and see what happens, they may see something else, just ask them to have general surgery or colorectal available if they find something going on in the bowels, to make sure an expert has a look, its scary but it's the only way. I hope your surgery goes well.

Would not just have a purely diagnostic lap op because you want as little surgery as possible as possible and this would entail a further op.

I hope your surgery goes well. You should have a follow up appointment a week or so post op to discuss the findings. They should not give you a detailed explanation whilst you are in the recovery room because that is poor practice.

They are wanting to do it as inpatient and have requested for me to be in overnight, not sure if this has anything to do with owt or if they just had an overnight slot available

the date they’ve given he lands 2 days before my period is due so I’m a little worried that it may delay the surgery

It won’t make any difference.

Best of luck to you. Remember just because they don't see endo doesn't mean you don't have it, it just might not be visible on the surface or to the naked eye. I had both active endo and lots of scar tissue seen when I had laser lap and dye - laser to treat, laparoscopic procedure and dye to flush my tubes. I did feel a bit violated because I knew they had inserted the dye through my cervix so via my vagina, it just freaked me out afterwards. I also have chronic fatigue from the endo.

You need to learn as much as you can about endo if that is what you have. There are lots or brilliant doctors, surgeons and lab researchers on TikTok raising awareness. Excision surgery has better outcomes than laser treatment. Endo seems to continue even after hysterectomy because it is believed (medical paper) that it can locally produce oestrogen so a hysterectomy only makes endo develop in other areas. Yes, it is completely shit. I hope the surgery gives you answers and gives you some relief from the pain. You period cycle doesn't matter for operations like this.

I had one with an eptopic pg in covid and it was all over and done in a day. The incision is tiny and just below belly button (my surgeon was a woman and deliberately did it on the only stretch mark I had from pg, so thoughtful!). She also managed to keep my tube, which I had been told would probably have to be removed (male surgeons often don't consider how different this can make lives with earlier menopause etc apparently). So, well worth checking these as I had no idea beforehand these were worth thinking about.

The surgery itself is really quick and minimal healing time. I didn't even get a drip afterwards (am in East Kent Trust and they're pretty dire and the nurse was shocked someone had forgotten and when I said I wanted to go home anyway) but even without that I healed up within a couple of days and had no pain.

The period won't make a difference, they'll have a very thorough look around, they won't just look at the surface. They'll give you details after your surgery, so maybe record it, if you don't feel you'll remember but you'll get it again on a letter likely. You can ask them about the steps they'll do before, or looking for any DIE endometriosis tissue if you want. You can ask them about using dye, if it will make you feel more sure, that they won't miss anything. Ask them to have general surgery or colorectal available if they find something going on in the bowels, to make sure an expert has a look

A hysterectomy doesn't make endometriosis get worse, it just has no impact on it as endometriosis has nothing to do with the uterus, endometriosis tissue can produce its own hormones including oestrogen so can grow whenever, whether you have a hysterectomy or not. Adenomyosis can however be cured with a hysterectomy as it is only in the muscle of the uterus. I'm sure you'll be fine, surgery is a normal thing to them, so don't be worried.

Some women do indeed have problems with endometriosis post hysterectomy because the endo can attach itself to other organs like the intestines.

Again you should receive a follow up appointment a week or so post op to discuss the findings. Better this than being given a detailed explanation whilst you are in the recovery room. I hope you get some answers.