Hi everyone. I’ve been on the sidelines of this site for a few years but have never posted.
I’m having a laparoscopy on Friday for suspected endo. The symptoms are all there and have been for a little over 10 years (i’m now 24).
My pain has spread from my entire pelvic area and lower back, first starting from my RUQ and now into the left side as well. I’ve had ultrasounds and CTs, nothing.
Since last summer it’s been almost unbearable. I only had one appointment with the gyno where i cried and begged for help and he immediately offered this surgery.
I am so terrified that they won’t find anything. I’ll feel like I’m going insane. What would the next steps be? Anything?
Everyone around me is very supportive and they all feel sure that this surgery will help me, but I don’t know if they can really grasp what’s on the line here.
If anyone else has felt this way before their diagnostic laparoscopy it would just be great to hear from your experiences. I’m inspired by all of your strength and resilience.
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Hnort4
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I felt the same before my lap last year so don’t worry, it’s normal! I was so used to being gaslit that I was second guessing myself right up until I woke up from the anaesthetic - I even dreamt during the op that I would wake up and there would be nothing found 🤣
The gynaecologist wouldn’t have offered the surgery if they didn’t think there was potential for you to benefit from it.
I have my diagnostic laparoscopy booked for 10 days time and I'm feeling exactly the same way. It feels like as all the tests have always come back negative and it's been such a fight to get any medical professionals to listen that it must be in my head. I worry more that they will say it's not there than they will find it.But our pain is real, our symptoms are real. The gynae department wouldn't have offered this surgery unless they suspected to find something. We have to hold onto hope that we will finally have our answers. I really hope you do, keep us updated x
Thank you for this. It helps to know this community is here for one another and so many of us are in the same boat. Good luck with your surgery as well!
Instead of focusing on what the next step will be if they DON'T find anything, instead focus your energy on just getting through the surgery. Odds are, they will find something. Try not to put the cart before the horse. The only thing to do NOW is get the surgery to see what's going on. Any answer is still an answer and great information to gather the tools to go to the next step. Do not be afraid of finding out what's happening!
oh my gosh I feel the exact same!! I haven’t been given an official diagnosis yet and no where near getting to see the hospital about surgery. Even after 10 years of crying at doctors for help🤦🏽♀️
My symptoms match up to Endo and I would consider going private for surgery as it’s probably another year or so waiting for the NHS. But I can’t help but worry the same as you and think it might not be it!!
Then it’s the worry well if it isn’t, what the bloody hell is it! I feel like I’ve been going round and round for years trying to figure it out, came across Endo and thought omg it’s me but what if it isn’t🤦🏽♀️
Sorry I know not exactly helpful but I just wanted to let you know you’re not alone thinking that. I think we are so used to being gaslight as women!
My fingers are crossed for you! Please put an update on here after your surgery xx
I could have written your post. I have been fast tracked for a laparoscopy and had my pre op this week.The anxiety of them not finding anything is consuming me. I've even had 5 weeks off of work with the pain, so will be mortified if there isnt a diagnosis.. As you say, I keep thinking what if it is all in my head. I feel like I am going crazy and as much as I have waited so long for this and answers, like you I am scared what will happen if they don't find anything.
It feels wrong to be worried about the embarrassment if it’s negative, but that’s also a big part of it. The shame is just a scary thought as a women going through healthcare stuff i guess. Good to know im not alone there also. Lots of luck to you also!
I know and it shouldn't be this way. It didn't even occur to me that my symptoms could be due to Endometriosis but it was my gp who strongly believes it is. I've already been misdiagnosed with fibroids, so that's where the fear lies, I guess. I should get my date any day now 🙏 Thank you
I’m so grateful for this post! I’m in exactly the same situation, have struggled for many years with fatigue which has been off the scale bad for the last 2 years. 6 years ago I started getting abdominal pains whether or not I had my period (all the time basically) and it started my journey of discovery and anxiety! I’m also on the cusp of menopause at age 50, so it’s a nice perfect storm! Had uterine polyps removed (red herrings, didn’t stop the pain) , failed Mirena coil insertion (4 months unbearable pain), 3 ultrasound and 2 MRI scans (all negative), 6 hysteroscopies and just came off 6 months hormonal Prostap treatment which didn’t resolve the pain. Gynae has just agreed to laparoscopy, so I feel closer to finding if endometriosis is the cause (gynae flat out ruled out anything gynaecological after the Prostap didn’t work at stopping the pain and only agreed after I disagreed with points from my own research, I felt totally gaslit!)) , but I’m anxious that it might not be endo, and if not, what?! I’m about to start a private medical policy costing more than £5k so I’m now double talking myself and wondering if it’s all in my head! I really appreciate seeing all the support shown on everyone’s replies, thank you! It’s come at such a key moment for me and I can only but wonder if it’s a sign…xx
it sounds like you’ve had quite the journey. I was in this mindset of them finding nothing means that it’s over, but Reading stories like yours really inspire me. I wish you the best of luck!
I felt exactly the same way. Getting wheeled down to surgery thinking is it all in my head? Have I been over reacting and the pain is normal like the previous gynaecologist ( ive had about 11 at this point) told me. Even before surgery my gynaecologist said in a very condescending manner "if we find it" like she still didn't believe my symptoms. I was also 26 at the time of diagnosis but I've had issues since I was 14, bladder issues when I was 18 but still my heavy periods and pain was "normal". Not to mention i am overweight so maybe my lower back pain and everything else was due to that! I had to refuse to be discharged to get the laparoscopy!
I came round from my surgery and my gynaecologist wasn't even there she'd left probably because she was wrong and she found something she didn't expect. I had it all over my left cavity and all around my bladder so bad they could only remove some as she was only a general gynaecologist and not an endo specialist and what needed doing was risky.
I had an appointment last week due to being in severe pain and only then I found out it was all around a ligament and due to my age and having no children the surgery that was needed isn't an option and to try paracetomol until I'm old enough and if i can/wished to do so... have a family first, and even with that she said maybe it's just wind!... I was shocked and annoyed at that suggestion.
My point is you know your own body and when something is not right. Periods and womb pain can be a little crampy and a small amount of discomfort is normal but if you're doubling over in pain and having more pain days than you're average period cycle then something isn't right and regardless of whether it's endometriosis or not it still needs ruling out. That being said not every gynaecologist understands endometriosis and knows what to look for and recognise symptoms so even if they don't find it, it's could possibly be a misdiagnosis as unfortunately it's not uncommon. You're always entitled to a second opinion or a later review if they are unable to locate the cause via other avenues. I've only had 1 surgery but seen about 11 gynaecologists who dismissed my pain said it was normal, it might be PCOS but we can't see cysts which ironically they later found when looking for my displaced coil or the best one by a male gyno oh you've got period pain (I was 23 at the time I think I know what a period and period pain is!).
Keep you're head up and don't worry too much about the outcome. If you're diagnosed I'm sorry that you're unfortunately joining this painful endo club but we're all here to support you but reading your post even if it isn't endo what you describe isn't your normal pain so keep pushing for the answer.
If you need any resources there's a good one on Fb called Nancy's nook endo education, mainly American based but they have lots of information about treatments and explains things in more detail.
And ofc you're more than welcome to send me a message if you need any advice/support.
thank you for this! Good for you for advocating for yourself. I’ve been turned away so many times because nothing has showed up on scans. I cried with relief when my new gyno said “it wouldn’t necessarily show up on scans. Why has no one offered you a laparoscopy?” FINALLY a doctor understood. He’s a gyno, not an endometriosis specialist so i’m a bit worried in that way because the pain has spread far from my pelvic region but it’s a start at least if they decide i need another surgery!
I’m so sorry that they refused to help you due to age and not having children. It makes me sick that they can force you into lower quality of life because of what THEY think is best for you. I wish you best of luck!
I posted this in response to another post of mine but wanted to put it here as well.
Well, the gynecologist found no endometriosis. We want to get a referral to a specialist since the pain is spread far past my pelvis. It just seems like the next logical step.
He did find what looks like PCAS, but couldn’t do anything to treat it. I’ll be put on a waitlist, he said it may take a long time. Whatever that means. I’m glad to have at least part of an explanation.
The surgery itself was a miserable experience as well. I always tell my surgical teams that I require more anesthesia and pain management (natural redhead). They never really listen to me and I woke up still in the operating room in extreme pain, the doctor giving out orders for high doses of dilaudid and fentenyl to get it somewhat under control.
My at home pain management is a regular extra strength NSAID.
I’m feeling very devastated but can’t even dwell too much on it at the moment because of the pain.
Thank you all so much for your support. Just knowing this community is here does help a lot.
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