Has anyone not been diagnosed after first laparoscopy but diagnosed later?

[Jollie93]

Hey everyone! 🤗 This may be a bit of a long one, so I appreciate anyone who takes the time to read it.

I was wondering if anyone had endometriosis that was missed during their first laparoscopy?

I've had debilitating pain on and off for almost two years. I went to the GP so many times when the pain started that I lost count pretty quickly and many of the male GPs tried to pass it off as IBS. I was recommended by one of the nurses to see a particular female GP and she's been great. After about 6 months of recurrent symptoms, my GP mentioned endometriosis. After another couple of months, whilst I was waiting for a scan, she told me to join a support group and seemed pretty convinced based on my symptoms. When I had my TV ultrasound, all they found was a couple of ovarian cysts. So I was recommended to go for a laparoscopy, my surgeon found adhesions all over my bowel and my bowel had been pulled out of place. This is kind of the confusing part, after surgery when I asked if endometriosis had been ruled out, he said there were indications but that I was not diagnosed with endometriosis. (I don't know if the indications are just in reference to the adhesions?) Anyway, he said he was fairly sure that was the source of the pain and things would go back to normal now. I had the mirena IUD put in during my surgery, and then had another mini flare up about a month after surgery, but it was a much shorter flare up than usual. I went from the end of September to now without any pain at all, and around a week ago the most debilitating pain has started again. It might sound silly but I truly believe I have endometriosis because I have so many of the symptoms and I've read so many women's experiences and can relate to so much of it. It's incredibly frustrating because I feel there's so little that can actually be done. I lost my mum very suddenly last year, she was diagnosed with Ovarian cancer and passed the day she was due to start chemo, so it was very quick. I've actually had a GP and my surgeon try to imply that this may be contributing to the pain and it could just be my mind playing tricks on me, even though this pain started around 8 months before my mum was ever diagnosed and is documented in my notes. I'm worried the GP is going to think I'm crazy or that it's all in my head.

Can anyone advise what the next steps could be if not diagnosed after laparoscopy? Or has anyone had a similar experience?

Thank you 😊

[TallulaShark]

Hi, I totally understand your frustration and confusion. I am in a similar situation as you. All the standard symptoms of endo or adeno, eventually referred to gynaecology after multiple tests for everything else. After waiting a year to see the gynae and a further 8 months for surgery, I had a diagnostic lap two months ago. Like you, told I have severe adhesions all across my reproductive organs, bladder, bowel, and liver but "no endometriosis". Baffled, I requested an MRI scan but was refused. Then frustrated, I booked a private ultrasound and consultation in London last week. This gynae found nothing but a small fibroid and a small cyst, but told me that the ultrasound can only detect moderate to severe endometriosis. I've got to have further surgery to free my bladder and left ovary from my abdominal wall and have been told endometriosis "might" be found beneath the adhesions. It's another 8 to 12 month wait for that. Feeling a bit lost now.

[Jollie93 in reply to TallulaShark]

Sorry you're going through this 😞 it's so tough! I really hope you get some answers/a proper diagnosis at your next surgery. The NHS wait times are brutal, and it's disheartening when you feel like you're finally getting somewhere and then all of a sudden, you're back to square one. Not sure if your pain is constant or if you have flare-ups, but do they seem to be linked to your menstrual cycle? Before I had my IUD my flare ups would happen at the end of my period (my periods were so debilitating) and it happened like clockwork every month, I feel that surely if there's also a link to the menstrual cycle then they can't say it's just adhesions? But I'm no expert 🤔I'm currently waiting to see my GP (which has been a 3 week wait 🙄) to find out next steps, but it's so exhausting every time I go, I'm given painkillers and told to come back in a few weeks.

[charlatan]

About 6 years ago I was rushed into A & E following debilitating pain and after a laparoscopy, was told they couldn’t find anything wrong. Two trips to A & E and a further laparoscopy later, I was told by the surgeon that it was the most extensive case of endo he had ever seen. It turned out that it had progressed so much that it produced a smooth surface and looked normal. My point is, they miss things, it happens. I was convinced I had endo myself and it made me crazy being told there was nothing wrong with me just bad period pain. Sometimes we’re not taken seriously but the best advice I can give you is to keep pushing for more help. Annoy them to the point they’ll find out what’s going on just to get rid of you. It’s what I did. Best of luck to you x

[Ps-endo]

Yes! This happened to me. Years of debilitating pain, I had my first lap in 2021 under general gynae, they said they found a “suspicious area” but gave no diagnosis, I kept pushing with my gp after and he referred me back to gynae who referred me for an ultrasound, that showed deep infiltrating endo and adenomyosis so I was then referred to an endo specialist, had another lap November last year who diagnosed deep infiltrating endo! It can definitely be missed or undiagnosed, especially by a surgeon who doesn’t specialise in Endo, I was in the same position where I KNEW I had it, so I kept pushing at the doctors, got them to go through my surgery notes, requested my medical record myself etc and just kept fighting for answers. It is so disheartening to finally think you’ve got answers and be disappointed not having answers, and totally normal even though no one wants this disease! I hope you can keep fighting and get answers soon xx

[Ps-endo in reply to Ps-endo]

Sorry I meant an MRI, not ultrasound 🤦🏼‍♀️

[Tiff22]

Hi, I’m sorry that you’re going through this. I’m in a similar situation. Had my lap in December and adhesions were found, sticking my ovary to my bowel and my bowel was stuck to my pelvic wall. I’ve been told that it isn’t endo and that adhesions can just happen. I really think that I have endo like you’ve said so I’m just going to keep pushing. I’ve got a referral in review to another hospital and if this fails I’m going to pay for a private consultation with an endo specialist to see what they think. So might be worth going back to your gp and asking for a second opinion and see where that goes. Especially if she’s been really helpful already.

I know what you mean about the doctors thinking to you’re crazy because I feel the same. I’ve been made out to be a hypochondriac and that’s it’s all in my head. On the days that I’m not in much pain I’ve actually said to my husband maybe I have made it all up but he reassures me that I haven’t. Bottom line is you know your own body and it isn’t normal to be in pain. Endo gets misdiagnosed all the time and the advice I’ve had on here is to see an endo specialist not just any gynae because they don’t always know what they’re looking for.

Keep your chin up chick and keep pushing forward for a diagnosis. ❤️