Long story short in December 2023 i was put on a waiting list for a gyno appointment for the possibility of having endometriosis. I just had my appointment today (11/08/24). However the doctor i had it with basically said that regardless if i have an MRI or a diagnostic laparoscopy that theres a 90% chance itll show nothing due to my ultrasounds not showing anything. Ive had period cramps as well as "flare ups" since i was 14/15 im 21 now. I initially started the combined pill in nov 2021 to reduce symptoms which it did for the first few months however i still get cramps and shooting pains down my legs and into my lower back.
Has anyone been to the doctors about their symptoms and have felt very deflated after the appointment due to them downplaying your symptoms or claiming that you might just have IBS or saying that just because nothing showed up in an ultrasound theres a high chance that they wont find anything in a laparoscopy?
(also the doctor wanted to book me in for an mri but i had to question her and tell her that i would prefer a laparoscopy just so im 100% of whether i do have endo or not so shes refering me to get the diagnostic lap done but i just wish that doctors didnt make women feel so trash about something thats can be so serious and not dismiss our concerns).
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Khadijaa23
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Hi lovely - I was in the same position as you before my laparoscopy 2 years ago. There was nothing on my scans and yet they found multiple patches of endometriosis! I was told it was anxiety, ibs, gall stones etc! It feels pants, to say the least- but I just kept coming back to what my specialist nurse said "Regardless of what they find your pain is real and valid", so your pain is valid and it's not in your head. You aren't alone in this feeling, there is a great book that made me feel less alone Private Parts by Eleanor Thom full of support and the kind of wisdom only an endo warrior could know. I hope this helps in some way 💛
It’s beyond frustrating and unbelievable that publicly for the lack of understanding and care re. Endometriosis is on the rise and they are still not learning/treating people this way!
The ultrasound is mostly a waste of time. Unless you have obvious endo cysts, or negative sliding (uterus doesn’t move), or clear signs of Adeno they’re more than likely going to say everything is fine/or unremarkable as they like to put it. 😏
I was in the same boat. For two gyne referrals to my local hospital gyne department. Spanning 8 years. It’s all been in my head, IBS, UTI, stress, anxiety to name a few. I’d make a complaint to PALS about the attitude. Absolutely have the MRI before the lap, them saying it’ll show nothing just because the ultrasound did is absolute nonsense!! It’s a much better scanner! Same for the lap! I had an MRI in Jan, it confirmed Deep Infiltrating Endometriosis, a number of organs tethered together which resulted in a referral to a specialist and I’ve just had my first lap at a BSGE centre. Unless the ultrasound sonographer has Endo expertise, it’s getting missed (more often than not). You need specific individuals carrying out/reporting on these scans (both ultrasound and MRI) and in my experience it took eight years - like finding a needle in a haystack!
Honestly, my advice to anyone (having learned the hard way) complain complain complain. Be that person. The past year it’s felt like a second job, staying on their case and holding people accountable. It’s literally the only reason I am where I am today though and the only way to get anywhere with them is getting angry and fighting for yourself! You know if something isn’t right, do not let them tell you otherwise. I believed the IBS bullshit early on and regret it every single day.
Wishing you the very best on your road to diagnosis. Xx
hi I would suggest getting the MRI done prior to any surgery. If you have severe endometriosis you don’t want a general gynae going in and then making it worse or having to close you back up only to have to refer you to a BSGE centre with a specialist endo gynae for more surgery.
The MRI might not show anything as I have read ladies who have had this experience but like Tango and Max says it depends who reviews your scans whether they see the endo or not.
I was 13 years of being told it was IBS, nerve damage after gall bladder removal and the best one was unexplained abdominal pain. I left it far too long because I thought I was crazy and making it up - well that’s how they made me feel. I wish I had been stronger through the years as my endo kept growing to severe case and this year had to have a hysterectomy/oopherectomy/bowel shave and pelvic clearance. Whilst this is not a cure I am a lot better than I was but it’s still early days and I’m due a follow up soon to check for reassurance that it’s all gone - for now.
If something doesn’t feel right trust your body and your instincts and keep going back. Too many women are left to suffer for too long and I’m sure we all wish we had spoken up stronger/earlier.
I can totally relate and this happens too often! I had a normal ultrasound as well and they also told me it’s very unlikely I have it! Although I was getting pelvic pain/lower back pain outside of my period and also bleeding pretty much constantly the gynaecologist tried to tell me I likely have IBS. He luckily still offered me the laparoscopy but very much played down my symptoms. I had my laparoscopy 2 weeks ago where the same consultant who told me it’s probably IBS found endo widespread on my pelvic wall. Always keep pushing as you know yourself what feels normal!
Really sorry to hear you don’t feel your symptoms aren’t being taken seriously, this is very common and lower stages of endo/superficial endo can often be missed by ultrasounds and the vast majority of those doing the scans aren’t specialists so I can understand you feeling this isn’t enough to rule it out.
What I would say though is please consider the risks of surgery before rushing in to it. If you do have superficial endo my understanding is that the evidence base for the success of laparoscopic excision isn’t great meaning it’s not likely to reduce your symptoms but carries all the risk of general anaesthetic and surgery. For me it reduced symptoms for 6 months then went back to how it was before.
If you can afford it then I would get a specialist ultrasound to confirm that there is no deep infiltrating endo which is what I believe surgery can be useful for and go from there.
There are also alternative ways of diagnosing coming along too, I’m not sure how long but they will eventually be able to diagnose with saliva, I think France are already using it, if it’s the diagnosis you feel you need.
If it’s pain reduction I would strongly recommend looking in to nutrition to manage endo and specific endo physiotherapy. As well as asking your consultant about medication such as deinogest, this helps my pain.
The first time I was (finally) being seen by a Gynae, I actually had to walk out of the room as he essentially laughed off my symptoms. It is so frustrating when you need to fight for the support. I'm really glad you are being referred for a Lap though, honestly, go you!
I would accept the MRI. My ultrasounds didn't pick anything up, even though with hindsight, what they verbally mentioned seeing during the ultrasound should have indicated endo, their reports said no abnormalities.
A private consultant then requested an MRI and the report said there was widespread endo and uterine adenomyosis. My surgeon later told me ultrasounds are highly unlikely to pick anything up, and it's a lack of experience from the people requesting it, when they should be requesting an MRI.
You should always have an MRI and they would likely request that before agreeing to do a laparoscopy anyway.
So sorry you are going through this. I really feel for you, especially having waited so long and then to be told that. From my own experience I would say that there IS a high chance unfortunately. However (and it’s a big however), it’s a high chance THEY won’t find anything if they are general gynae. A Specialist will have a far better chance of identifying and treating endo than a general gynae. So when they say ‘it’s a high percentage chance nothing will show, it’s not because those methods aren’t good in any way, it’s more so their lack of knowledge due to not specialising in Endo.
My journey included a 3 year wait, lap with a general gynae where ‘nothing showed’. I was gaslit by them and also by the next. Decided to go private with an Endo Specialist (best decision of my adult life so far). Found to have stage 1, treated and now finally have my life back.
There are good general gynae surgeons. I don’t want to paint them all with the same brush, but from my experience and the majority of stories I have read, the success rate is small.
It may be worth asking to be referred to a Specialist. I hope you find some answers soon.
Hi Unfortunately this is very common with endometriosis and the treatment we get from health care professionals. There seems to be a lot of misguided judgement and information as to what endometriosis should appear as and what tests can show it.
I would definitely recommend getting the laparoscopy done. My ultrasounds never showed anything (still do not) yet when they did the operation in 2012 I had it in my womb, ovaries, tubes, kidney and bowel. My ovaries were also twisted and all stuck together. In my case they only managed to remove it from the womb because they didn't have the other specialists in the operation.
I will say if you find a good GP/ gynaecologist to hold onto them for dear life because they are rare. I am currently in the cycle at the minute and definitely feel like I am being gaslighted or made to feel like I am imagining it. So unfortunately you are not alone in that feeling.
Hopefully you get answers soon or at least find a treatment that works for you
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