private consultation

[Moll2309]

so today I had my consultation… I do feel slight disheartened coming away from this appointment. I was told there is a small chance it could be endometriosis however it is more than likely a bowel issue due to my symptoms but they also cross wire with endo symptoms. I haven’t had any findings on scans so they said this could be because it is not endo or very small amount so a laparoscopy may or may not be worth it. They have said this could be something more like IBS or Coeliac disease… has anyone ever been told this before?

[AllthatGlitters]

Hello yes I was told I had IBS for many, many years. I moved area and went to a different GP and I was sent to gastroenterology and the consultant sent me for an MRI as he suspected adenomyosis and he was right.

Are you getting a referral to the bowel clinic? Don’t be disheartened as if you get a good consultant they will send you for more tests.

X

[TennisCourt]

Was this a specialist? I’m super shocked by this response, I’ve had this from general people in the NHS but not a specialist. Let me DM you xx

[purplevelvet9]

Endo is hard to find on scans, that’s why the laparoscopy is key. I’m surprised a specialist gave you this answer! If you feel comfortable doing it, push for the lap. At least you’ll know one way or another and they can then come up with an appropriate treatment plan for you. Good luck!

[Avourneen]

I think almost everyone with endo has been told it is IBS for years before the doctors realise it is endo. But if you have had lots of scans and nothing shows up it could be, the main thing is are your symptoms much worse when you have your period? If it was IBS your symptoms would be the same all the time and get worse depending on what you ate. if your symptoms are much worse when you have your period it's not likely to be iBS.

What scans have you had? It makes a really huge difference if the person doing the scanning is used to doing scans for endo and not just a general sonographer.

Have you had an MRI or TV ultrasound?

Do you have a lot of bowel symptoms? If you have endo on the bowel it's likely to be advanced endo which should show up easily on a scan. They can check easily if it is coeliac that is a simple blood test , so it can be ruled out by your GP. For IBS I think they give you buscopan medicine and see if it improves but it is so common to be told for years that you have IBS when in fact it is endo.

Think about when you get your worst symptoms and tell that to the specialist he/she should be able to make a decent guess from that. Maybe you need to have a scan done by a specialist sonographer?

Good luck, let them investiagte the other two options to rule them out if they want but don't be fobbed off keep pushing.

[Cocoacupid]

yes hun was always told Ibs but at 37 have now deep severe endo my bowel issues got worse and worse now I hardly go out for meals as always rushing. To the lo and feel extremely embarrassed 🙈.

[Cocoacupid]

also bleed after every bowel motion and so painful to pass feel constantly sick and have to take anti sickness tablets even though I have the coil am always in pain always feel cramping and feel am on a period. Had a lap and they took a hugh endometrioa away but said pelvis organs all frozen and severe bowel involvement just keep pushing hun. Also painful sex deep inside and bleed loads on period and bleed more days have been like it since I started at 10 years old am just glad 27 years later have a diagonois had my mri on Monday just gone to see how much bowel surgery I need . As they were thinking that I have to have a resection of the bowel. My doc at first thought it was Ibd so was sent for colonoscopy as blood in poo but came back clear as the inflammation on the outside of the bowel wall instead of the inside like crohns or colitis

[Cocoacupid]

Hun also apart from what they thought was a simple cyst all scans I had showed nothing up hun just keep pushing ok before it gets any worse after the lap I was like thank goodness not in my head as got to point can hardly walk at times as endo wrapped around my sciatic nerves too. Don’t feel disheartened you know your body more than a doctor if something doesn’t feel right. My mum was like you make mountains out of mole hills until she saw my surgery pictures she was like am so sorry 😢. With my mum though she suffers cronich pain and doesn’t think anyone else can suffer like her. She apologised and understands now.

[Whoosh451]

I was told i had ibs for 20 years- but I have endo on my bowel which has fused to my uterus and adenomyosis which causes bowel issues throughout my cycle. Never showed up on any scans until laparoscopy three weeks ago. Now other areas are showing up on Scans but it was never picked up prior to laparoscopy.

[Sunset-lady in reply to Whoosh451]

Hi this is exactly the same as me! Did they do the hysterectomy? Can I ask what you have done since? I've been told to leave it and take zoladex. Would love to hear from you!

[Sunset-lady in reply to Sunset-lady]

Sorry I've just reread your response (I've had coffee now) and you don't even mention hysterectomy. I don't know I thought you'd put that. Apologies- I'm so tired x

[Sunset-lady]

Yes that was what they told me. I was tested for coeliac and it was negative but cutting wheat out changed my life massively. I was diagnosed with IBS at 27. I had ultrasounds and scans which found nothing. Then they went to do the hysterectomy last week and it's all completely fused together with scarring. Push for what you want. I haven't had pain for 10 years because when I was around 37 I decided to really change my lifestyle. I believe doing this helped me immeasurably. Good luck x

[Rasmol]

Hi ! Women with endo are more likely to suffer Coeliac disease and IBS. I would say the most frequent endo symptom is period pain that doesn’t respond to regular painkillers (ibuprofen). An ultrasound scan is unlikely to pick up endo unless is very evident. Laparoscopy is the best test but is very invasive so MRI scan done by a endo specialist (this is key) is a good diagnosis tool (Although not always can pick up endo). Whatever you do make sure you find a endo specialist. Hope this helps. Good luck

[Labyrinth8924]

I have just come away from my first gynaecology appointment feeling exactly the same! My GP thinks from my symptoms it’s endo and therefore didn’t send me down a gastro investigation route but because my ultrasound scan was fine (which doesn’t show up endo anyway), the Gynaecologist thinks it’s unlikely I have it. All my symptoms are classic of endometriosis, I have had stress induced IBS as a teenager and know it’s not that. Really disheartened too, she recommended trying hormones but I HATED being on the pill and I don’t want to put my body through it without a diagnosis. She didn’t think a laparoscopy was worth it for what she said could be mild endo. Surely it’s something to catch early? And I’ve had symptoms for 3 years?

[Hayleyyg123]

Hi Molly, just like you I had nothing show up on scans (internal & external) but I pushed for a lap after years of back and forth, thankfully the consultant was happy to do so but did warn me it would be unlikely they’d find anything and it could just be a case of ibs (which is what I had been told for many years alongside other stuff like stomach migraines, food intolerance) They did the lap and found a considerable amount of endo. I cried so much when they told me! I knew my body and knew it was more than ibs! Trust your instincts, I also did not have classic endo symptoms. Periods were manageable and regular, the pain however the week after was not!!! By having the lap you will know either way.

[RJane83]

hi

Sorry you are having issues

I have endo and coeliac disease and am currently undergoing tests for IBD and had re referral for bowel involvement with endo - a consultant told me recently it’s worth having the tests to rule out everything.

I hope you get some answers