Scared about my laparoscopy - what if I don't have endo?

[Silversky]

Hey, I'm new here and have recently been told I've maybe got endometriosis... I'm worried about having the laparoscopy because I'm worried they won't find anything, to feel like I've put myself through it for nothing.

The symptoms add up, and I'm in pain daily now (I had the implant about a year ago which calmed things for about 6 months, but it's come back worse)

My support network consists of my mum sister and my partner but they're all facing their own dramatic problems at the moment and I don't feel like I can worry them with this maybe illness, so I was just hoping I could reach out here and get some experiences.

Did anyone else worry about the potential of not having endometriosis? It seems like such a silly thing to worry about, because it should be a good thing not having it, but at this point I just want to validate that there's something wrong, and have any diagnosis...

[theallnewme]

I'm in the same position as you! I haven't yet had my ultrasound but I'm terrified that it's all in my head and even though the symptoms add up I'm not sure if I'm wrong here my doctors agree that it sounds like endo but I'm not sure I'm ready for a laparoscopy should it come to it. It's always that just in case.

What I've learnt is if it feels wrong there's something wrong and we'll never know unless we undergo these things. My ultrasound is Wednesday and I'm flying it alone but I'm hoping for a result even if it isn't endo just a diagnosis would be great at this point.

I hope everything goes well for you and you get the answers you're looking for!

[Chrysta123]

Hey,

I was exactly the same as you before my lap, I was so worried and anxious that I would wake up and be told they found nothing and then have to go through recovery for no reason but when I woke up they told me they did find something so I was glad I listened to my gut and forced myself to go through with it so if you feel like something is wrong as the allnewmesaid said chances are something actually is wrong

I did mentioned to my consultant that I was worried they wouldn’t find anything and I would go back to just being dismissed but she was great and said she didn’t think it was likely they would find nothing (as they had ruled other stuff out) but that if that did happen she would talk to me about other possible routes I could go down to try and find an answer, could you maybe speak to your gyne and just say what would happen if there is no endo so at least then you can know that it wasn’t for nothing it just ruled endo out and you can try something else?

[Natalie02]

I feel the same! I just had my second ultrasound during the investigation into my symptoms and they said they’re fairly certain it’s endometriosis, but I have the fear that I’ll go through the motions just to be told ‘nope it’s not, we don’t know what it is’. It’s such a weird feeling!

[Kaye_C]

Hi, don’t worry about not finding anything. I’ve had two laps- first one they found endo and the second one they didn’t find anything substantial but lots of adhesions (due to one previous lap and a C section I’m guessing). Awaiting my third lap any day now and having the same ‘what if they don’t find anything’ fears again but reminding myself of how understanding and informative the doctors were after my second op. If nothing is found then it’s one thing to rule out and try another avenue. Good luck!

[cupcakekitty07]

I was in your shoes last year waiting for my second lap. The first one was an emergency, where I had a few baseball sized ovarian cysts that burst and twisted up my ovaries, and I was finally diagnosed pcos after my whole childhood being told I was just weak and all the pain was normal. But last year when it was a thousand times worse everyday and my ultrasound came back clear from cysts, they were really worried I had endo too, as it does run in my family, and the last time they really weren't looking for anything aside from the obvious.

So I actually joined this forum then because I was really scared it would be nothing, and I was in way more pain than with torsion, and I really had hoped they could remove something and I could have that instant relief again. They didn't. I was crushed. But they did find clues that she suspects all were contributing to the more extreme pain at the time, so I had other options to try to relieve my pain after healing. Some of that was old scar tissue, chronic crazy inflammation, and my ovarian veins were like hugely swollen and kind of backed up? She said that was more unusual for someone as young as me (25 then) and someone who's never had children, but I guess that's totally why I got some ugly varicose leg veins I hate so much. That plus the hypertonic pelvic floor dysfunction.

So, after, I was still negative, but I got some other avenues to look at. Mostly physical and behavioral adjustments for pain management which helped to some degree, and they wanted me to consider different bc. It's a work in progress, especially as I had/have a few other serious health things going on to stress about same time.

..but it honestly went to show me that there are sooooo many different things it could be, and also it seems to really depend on your gynae and how knowledgeable they are about lesser known issues. I technically have three I see, and each one has picked up on different things over the years, which is kind of interesting, also slightly worrying when I think about friends who are stuck with docs like my old ones, and they aren't so lucky to have had an successful ER visit or genetic history to maybe be treated more seriously. Hell half the time I'm still dismissed and it's aggravating. But my current ones are good and they watch my flares, they say endo can be missed until it's a lot worse, or not in the obvious places. Me always having problems there doesn't make it easier...but ultimately I'm glad I didn't, but it's still really frustrating...and they still kinda are watching me for it. So don't give up, whether they find endo or not right away, maybe they'll find other clues to try to help you out with, and remember it can sometimes take many years to even get diagnosed with endo. I know my mom was dismissed her whole life until she was trying really hard to have kids and fertility treatments didn't work. And it was also wayyyyyy crazy bad taking over obvious by the time she got diagnosed it's heart breaking.

[Rebeccasalt]

You are definitely not alone in your thinking. I have had 2 laps now and each time I have worried about them not finding anything.

The first time they found endo which helped justify my pain but my follow up wasn't great and my report very vague so I didn't really know enough about my case at all and I was given the impression it was very simple and no big deal.

And then when I can off the pill 6 months ago it was horrible but I spent the whole 6 months thinking maybe I just had it mildly and beat myself up thinking that I was exaggerating in my head or just being a wimp when I felt like I couldn't get up or move easily. I also felt fobbed off by GPs who just kept upping my painkillers rather than any referrals so I eventually decided to go privately.

I had my second laparoscopy last week and again I was really worried they would find nothing. But they found deep infiltrating endo all around my pelvis along with a full thickness nodule in my bowel that they couldn't remove at that time and that my bowel had become twisted with adhesions. This time I have had much more information about my case including severity and next steps that I feel abit more justified in my pain. But I'm finding that it's a fragile journey to accepting that the pain I've felt, the days off sick I've had, the not wanting to move anywhere and the difficulty walking some days has not just been because I've had a rubbish state of mind or that I've been overly anxious.

So no, you are not alone in your thinking and worry that they won't find anything, I think it's probably very very common!

My advice would be to ask all of the questions you can before and afterwards. If they do find you have endo find out where the endo was and what stage it was at. Try not to let them rush you when they are discussing results with you (easier said than done). Take a list of questions for before and after and get them answered and have a clear next steps off them whether they do or don't find endo. Write these down or get a report. This will help in the future if you ever need to look back as it can all be a bit of a blur.

Also I can't compare to difficulties your partner and family are having but please don't play this down to them - this is a really big deal.

Good luck X

[kh96]

Coming from a slightly different perspective here. 9 months ago I had a negative laparoscopy. I’m not going to lie it devastated me because I no longer felt confident opening up about my pain. However, I’m still confident that I have early stage endo, my symptoms are so specific to this disease and I have a family history that I only found out about after I already booked the surgery. When I found out it was negative I came here for advice and found that a load of people would get negative laps by general gynae surgeons and then would get another by a specialist clinic and they would find it. That’s my one regret and so my advice to you, it obviously might not be possible, but if you can get a specialist to perform the surgery do it so you can be confident in the results. It’s not the end of the world if you get a negative lap but it is hard. What would be harder is the constant anxiety about how bad it could be if it goes unchecked. I know now that even though I probably have it, it’s probably not sever and it’s not in my womb which is a massive relief. Check out my blog theghostinherbody, I’m trying to build a community for people like me.