Post Lap No Endo found

[VioletCoffee]

Hi everyone,

I had my laparoscopy to look for endometriosis on the 5th October. When I woke up, I asked if they found anything and they said no endometriosis was found. I could NOT stop crying all day as I was 100% sure I had it since I have every single symptom plus a family history (literally my mum has it). My pain and symptoms are not affected by any pain relief or birth control, I've tried everything at this point. To be told they found nothing to answer my unmanageable, unbearable pain that I had to quit my job over was very difficult, especially as a 22 year old. Anyway, I was struggling to get answers from anyone over what they looked at; if there were cysts, fibroids, literally anything. My surgeon didn't even come to see me and was going to discharge me with no follow up and it felt like a kick in the teeth. My mum's endo had stuck her bowel and bladder together so I was assuming if mine is any similar, it might not be on my reproductive organs. Unfortunately, I don't know where they looked and I only had two incisions rather than the typical three for laparoscopy so part of me is worried they saw nothing in one area and decided to not look further.

I had an appointment with gynaecology booked for this wednesday before I even knew I was having surgery and they have allowed me to keep it so I'm wondering what my course of action should be. I just don't buy that there's nothing wrong with me when I'm in such severe pain and literally get endo belly with all its pain. Sex is painful, I get lower back and leg cramps, obviously period cramps, I get lightning bolt pains up both my vag and my bum hole. I have horrible digestive issues, hence why I assumed it's on my bowel. I'm thinking of asking them to check me for adenomyosis because I'm scared if gynaecology discharge me, I'll never get referred to them again. I also want to ask for a copy of the photo they took, because they did tell me they took a picture during surgery. But yeah, I'm just feeling really lost at the moment and like my body is betraying me. I've had this pain since I was 16 and it's got progressively worse each year.

[endo_the_stigma]

My goodness, this was heartbreaking to read I am so sorry💔 This was probably my biggest fear when I started my journey into getting a diagnosis so I can't even imagine how you must feel right now. You know your own body and there is clearly something wrong. I know its hard but please don't give up on finding answers. Where did you have your lap done? If it wasn't by a BSGE qualified endo specialist in an Endo Centre then I'm afraid that it was not done by someone who knows where to look and what to look for so you likely do have endo, you've just sadly been treated by someone who doesn't know what they are doing which is very very common, you are not alone. If you can afford £250 for a private consultation with a BSGE endo surgeon I would HIGHLY recommend doing so - it is the BEST thing I ever did and I sobbed during it because everything he said made me feel so validated even before he diagnosed me. I was lucky enough to be able to afford to have a private MRI which he referred me for (could've waited for NHS so still an option) and that picked up deep infiltrating endo and adenomyosis. If I was you, at your gynae appointment, push for an MRI!! Don't get me wrong, it isn't always picked up via MRI but it can be.

I can't afford surgery privately so I am now on the NHS waiting list but for my endo specialist to do it because I wouldn't trust anyone else. I would also advise that you raise a formal grievance with the hospital where you had the lap because it sounds to me like they have been negligent (not even a follow up chat with the surgeon after??? wild!!).

I am so sorry you're going through this babe, my messages are always open if you want to chat or if you want my consultant's details. Lots of love and wishing you all the best for getting some answers💛💛💛

[VioletCoffee in reply to endo_the_stigma]

Hi! Thank you so much, reading these comments has made me feel so seen. It was a General gynaecologist who did my laparoscopy. I have looked and there’s a BSGE endo clinic in a hospital near me so I’m going to ask to be referred to it in my appointment today and pray they say yes. I had a vaginal ultrasound before that I was told found nothing then three weeks later I got a letter that there was a cyst on my ovary that they weren’t going to do anything about. I’ve had an mri before like last December that apparently didn’t pick up anything but right before the surgery, my consultant said there may have been cysts on both my ovaries which is the first I’ve heard about that… anyway, they just don’t tell me anything like how I don’t know exactly what they saw or didn’t see in my surgery or where was looked at. I’m just hoping I’ll get this referral. It seems to me like whatever endo I may have is hiding 😅

[snoopy3]

I echo Lily and everything she said. If you can locate your closest bsge specialist endo centre and see the gynae consultant privately at least he/she can then put you on their NHS waiting list for a second lap and anything that follows. Plan B is to ask your GP to refer you to that consultant for a second opinion so you don't have to pay the initial consultant fee privately. I may be wrong but previously I think it was the case that you are entitled to be referred to a BSGE specialist endo centre if endo is suspected. Anyone confirm this is the case still? Your only issue with the second option is your GP may refuse based on the negative lap. Still worth a try 😘

[VioletCoffee in reply to snoopy3]

Thank you so much! These lovely comments have given me back the fight I lost. I’ve been told mixed information about what or what not is there before so I think I really do need an endo specialist to look at me. There’s a BSGE clinic near me so I’m going to ask to be referred to it ❤️

[Capi66]

Hi do u have any bowel issues? This can feel like Endo pain too. If u do have get them also to refer you to check that out. My advice never give up!! Keep pushing. You know your body and your pain is real. Good luck lovely xxx

[VioletCoffee in reply to Capi66]

Hi! I do have bowel issues, which is why I assume it’s on or near my bowel. I first originally went to my GP about my bowel issues and he said I didn’t have irritable bowel syndrome and everything looked normal. He only prodded at my stomach though and this was years ago at this point. My mum had her endo on her bowel, my aunt also had it there and I have the exact same symptoms as my aunt. Thank you for being so understanding, I really appreciate it!

[Capi66 in reply to VioletCoffee]

Ask for a colonoscopy xx

[Lovethemoon]

Oh I could have cried reading this. I’m so sorry you are going through this. I have had the same experience before. My first lap then found endo. All good. Then luckily had a baby. 4 years later I go for my second lap having been in the worst pain for about a year and could tick all the symptoms of endo. To wake up after surgery and they say nothing was found. It’s heartbreaking. We are now 18 months down the line again, I’ve paid to see a specialist privately for a consultation as I know he’s the best in my area. He agreed the images looked healthy and clear from that lap. And 18 months wouldn’t be enough time for endo to grow. Coming from a well trusted consultant I was quite shocked what I was hearing! Anyways birth control doesn’t work for me anymore so now I’m on ZOLADEX to help suppress everything but that means I’m now in a medical menopause and it’s not fun! What I would say is push for an MRI. I also practically begged him to do an mri of my whole abdomen (gastro area included) as I just felt something had to be wrong. And I have two areas of concern that would point towards adenomyosis rather than endo. So all of can lovely is push and push for answers. It saddens me there are so many of us out there who have to fight for answers but don’t give up. Your symptoms are valid and so is your voice. Your body, you know it more than anyone so follow your gut instinct 😘😘

[VioletCoffee in reply to Lovethemoon]

Thank you so much! I’m so sorry you’re going through a hard time with it too, it’s absolutely crazy how women have to fight this hard to get answers and proper treatment. I’ve had an mri before last December but I don’t think it included my bowel as my mum had to take something for hers to settle it and I didn’t have to do that. Apparently there were cysts on both ovaries that I only found out about right before my lap (and I originally was told there was nothing from my mri in January) so I’m pretty sure I don’t know all the information about what is or isn’t there or they are trying to downplay it, or maybe an endo specialist can look at it.

My friend was just diagnosed with adenomyosis through an MRI if that gives you any peace for mind, definitely keep pushing for it!

[white61]

I’m in the exact same boat as you so I completely get how you feel! If I was you I would ask for an MRI scan for the possibility of adenomyosis. This is what I did and they have now found a cyst in my ovary and they want me to have an ultrasound in 3 months time to see if the cyst grows or goes by itself. They said if it gets bigger it may be a sign of endo within the ovary. I had to literally beg for the MRI Scan as they wanted to discharged me as my surgery showed no sign of endo and I had the all clear. Now I’ve had this letter it shows there’s a possibility it might be in my ovary… I feel lost and very confused just the same as you. Sending big hugs xx

[VioletCoffee in reply to white61]

Hi! Thank you so much! I’ve had scans before find cysts but they’ve never required any follow ups, so maybe they could be adenomyosis? I will definitely push to be referred to an endo specialist to see if they can take a further look. I really hope you also can get the answers you are looking for. Sending hugs to you as well xxx

[Ecclesiastical]

you need an MRI if you haven’t had one already. I had a diagnostic lap and was told I had mild endo still had symptoms so paid privately to see an endo specialist and MRI scan. They operated and I have deep infiltrating endo over my bowel. I’ve been battling for answers for over 4 years and still suffer with awful bowel symptoms and extreme fatigue. One thing it’s taught me is that although it’s exhausting to keep fighting for answers nobody is going to advocate for your health other than you and the treatments sadly aren’t a cure. So even when you have these options offered to you there’s no guarantee they’ll always be effective as I’m sure you’ve learnt. I’m sorry to hear about your post op experience, and hope you have more support in the future

[VioletCoffee in reply to Ecclesiastical]

Hi! I’ve had an MRI but I don’t think it included my bowel. It found cysts on both ovaries but apparently not enough to warrant a diagnosis or review. I also had a cyst found on my ovary during an ultrasound. I think I’m going to ask to look for adenomyosis and be referred to an endo specialist maybe for another mri that includes my bowel as I have a lot of bowel issues. Thank you so much for understanding, it really means a lot to me x

[ccfd9]

Hi

Did they do a biopsy of any tissue? I suspect not. Hence, they either did not look closely enough for does not know what they are looking for. The other option is that you have deep infiltrating endometriosis which is below the surface and not visible.

Dr Cameron Nerzhat in Atlanta has done some research and has produced an app that asks questions and gives you a score. If your score is 90 or above you have a 95% chance that you have endometriosis.

With the issues with the bowel you could try nutritional therapy from a specialist like Dian, see endometriosis.co.uk Dian does not need a formal diagnosis she works with your symptoms and your needs to produce a dietary plan and supplement program specifically for you.

Best wishes