Chances of false negative?

[Harleytje]

I feel like I'm at a total loss.

I had a laparoscopy for endometriosis in January, they found nothing. They fitted me with a mirena coil, said that would help my symptoms even without an endo diagnosis, I was told things would settle in a couple months.

Except we're now in September and it's the same! Periods that last three weeks, spotting between periods. Some times I only get a couple days before it all starts again. Agonising cramps, abdominal pain, groin pain, constantly stuck in the loo.

I feel like I'm going crazy because I've had all these tests. I was given an injection a couple months pre lap, I can't remember the name but it stopped my oestrogen and my period, I had to take hrt stuff but I could only get it for a few months. Could that have caused a false negative? Am I just totally barking up the wrong tree?

I just feel like I'm crazy but I'm currently dealing with cramps so extreme I'm in tears. Any advice would be such a help, thank you.

[Afrohair]

The endo has probably been missed it happens a lot you can’t be in agony and not have endo and why would they offer you a coil if you didn’t have it ?its their fault they don’t know what their looking for

[hannah11]

I'm so sorry that is happening to you, it sounds really hard.

Endo can be missed if the surgeon isn't skilled enough to spot it - did you have surgery with a BSGE endo specialist or a general gynaecologist?

Also, have you been investigated for adenomyosis? It's very similar to endo but in the actual muscle of the womb. It can be responsible for prolonged, heavy periods and isn't always detectable when they do a laparoscopy. Best way to spot it is through scans.

I really hope some of this helps and again I am so sorry this is happening to you. I hope you get answers for why you've been this unwell. Please keep fighting to be taken seriously and if this doctor is unhelpful move on to another. You deserve to be treated much better than this.

Good luck and keep us posted on what happens.

[Harleytje in reply to hannah11]

Thank you so much. I think it was a general gynae I seen. I've never heard of adenomyosis but it might be worth suggesting to my gp, thank you! I've had so many scans I've lost count and nothing ever seems to get flagged. It feels like no doctor takes me seriously, especially when I'm still in my 20's. I'm going to keep fighting, I don't know how I'm expected to live like this.

[hannah11 in reply to Harleytje]

Hey again. Aw I really feel you. I've had endo since my teens (am 26 now) and I've had to spend so much energy and time fighting to get doctors to listen to me about my illness. The good news is it is possible to find ones that take your pain seriously and want to help you, just hang in there a little longer and I'm sure we can find one for you too!

I would strongly recommend asking your GP to refer you to a BSGE centre and getting scans and investigations through their team. These centres provide the gold standard treatment for endometriosis so they are your best bet at getting diagnosis/ treatment. Unfortunately a lot of general gynaecologists claim to be able to work with endo patients but they don't actually have the expertise to spot subtle endo which is really frustrating. The BSGE specialist centres are all around the UK so hopefully there is one local to you. If they are endo specialists they will also have experience with adeno too as these diseases can go hand in hand so they should be able to diagnose that too (if you have it)

I wish you so much luck with everything and if you ever need to talk feel free to pm me. You're gonna get through this I promise. x

[Humaira84]

Hi dear ,I have the same condition I try everything which can help me but nothing last option I try marina and it actually help me marina take time to

Settle in body about 4 to 6 months u will feel in few months u need to remove but after 6 months it will b fine I had same symptoms cramps and feels like nothing help but believe me it will help I had marina from one year and 5 months and I recommend it really help when u have endometriosis .

[R2-Dee2]

I've been here before too; I didn't get diagnosed until my third laparoscopy, which was with a specialist. I've had two excision surgeries and a hysterectomy as I had adenomyosis too.

If your GP won't refer you to a specialist, you can pay for a private consultation with one. This usually costs around £150 and will be a great investment! They may offer to add you to their NHS list for treatment. My GP at the time was useless and wouldn't help me, so I paid for a consultation privately.

Sadly you need to find the strength to advocate for yourself; the medical professionals we trust to diagnose us a and treat us often are inadequately trained in finding and treating endometriosis, and are even less knowledgeable about adenomyosis. Become fluent in both illnesses and their symptoms, learn about the myths surrounding both, and what will adequately treat it. You will be your best advocate, and hopefully it will help you get your diagnosis and the best treatment for you. No hormonal pills or injections (or the coil) will treat the illnesses, only the symptoms (and it sounds like the coil is making no difference for you). Don't take no for an answer, and keep fighting for help. Sending you lots of love xx

[CourtneyD]

I am in the same position as you! Not that I can offer much help but here if you need a chat! I’ve had a laparoscopy and it came back no endo so they diagnosed me with polycystic ovaries (which I’m told shouldn’t cause pain) and IBS which I do I agree I may have alongside other things IBS can not cause this much pain and all the other symptoms! I feel so crazy I’m crying all the time that nobody believes me and I don’t know what’s next but it’s nice to know you’re not alone! My pain doctor told me last week that I may have started walking funny and that’s caused my pain or that I should see a psychiatrist! I was shell shocked on the phone that somebody can say that’s and make you feel that way! We know our bodies and we know something isn’t right sending my love and support!💕

[Hidden]

Im really sorry that you are still having all these symptoms. Can i ask if it was a BSGE specialist endo surgeon that did your laparoscopy? It can be missed if its not an experieced endo surgeon that did the surgery. One option is to ask your gp for a referral back to gyny to a specialist. With what your going through it sounds a though it has been missed. I had a really bad experience with the coil and had to have it removed after 6 weeks. I think in the current climate wait times are a bit longer to see a specialist, but sometimes just having an appointment date can give us some light at the end of a long dark tunnel. One thing ive learned in the 20 years ive had endo is that you know your own body better than any doctor, and ive had to learn to stand up for myself and be my own advocate as sadly some doctors/consultants are very quick to judge/lesson what we are going through. Learn as much as you can about endo, and then you are able to ask questions and also question what you are told. Hope things gets better for you.

[CGrif]

My endo was missed twice and pain put down to appendicitis. It was only 3rd time lucky and lots of persistence that i got a diagnosis. Endo can be easily missed as very often it can only be small amount but still cause alot of pain, mine was behind my ovary so it was only when it had built up that they saw it.