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Endometriosis UK
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No endo found - so why am I upset?

Just got off the phone with the staff nurse who read my operation notes to me as I have been unable to get remotely close to contacting my gynae.

She read me my notes, stating that everything is completley normal, no endo, no adhesions and nothing out of place. I literally began crying as soon as I got off the phone as I have no clue what this is now.

I had all the signs pointing to endo but now I feel like I'm back to square one with wondering why I was having such random and long bouts of bleeding and pain every single day as well as other stuff.

I literally feel broken right now but my parents say I should be happy that the doctor couldn't find endo so that I don't have to deal with that for the rest of my life. My parents now just think it's a mental health issue and that I've been making myself ill for years with ununtreated anxiety but I feel like that would be different and wouldn't cause the same symptoms.

This is probably just a rant now but I just feel so low at not knowing why I've been in pain and having a bad time without any reason behind it.

This crying has made my stitches hurt. I feel like an idiot for pushing them to do a lap and then they find nothing. I feel like my gynae will feel I've wasted his time.

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I was in the exact same place as you in November, the nurse came round to see me and I sobbed so hard and for so long that my dad had to pay extra in the car park! For the first few days home I felt awful, like I didn't know what to tell people and that I was making it all up. People on here always say to push for something to be done, another lap or scans but I know that right now it doesn't feel like you want to.

I took 4 months of getting over it, of complete denial and thinking they must have missed it, and then I went back and asked about other things. Now I've been diagnosed with IBS and am having a host of gastro issues looked into which I've never even considered as I've never really had any bowel issues, but a lot of the symptoms like the stabbing pain and the bloating are signs of so many different things. I was told it was anxiety from the age of 13, but I know the type of pain my anxiety causes and it's nothing like what I've felt, so to feel like I had answers after 8 years was great, only to be, as you said, back at the start.

I know right now it feels like the end of the world but there are so many different options available. I've chosen to come off the pill against my gynae's advice because it wasn't doing me any good and, if there was endo there they've missed, logically it will grow back and then maybe another lap years down the line would be able to find what they couldn't now. Keep your chin up and focus on getting yourself better mentally and physically before you beat yourself up too much xx

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Thank you, this was really helpful.

I understand that my anxiousness could be causing me some of my pains but I'm pretty sure the spells of random bleeding and other symptoms are not anything related to that - especially as the symptoms have gotten worse as my anxiety has improved.

Thanks again xx

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When I got my lap the surgeon explain to me that even if they dont find any endo it doesnt mean 100% that you dont have endometriosis as it can be so hard to find sometimes! I was found to have it stage 1 on my pouch of Douglas and ligaments but from the symptoms I have im sure I must have it on my bowel and diaphragm too. It could be that you definitely don't have endometriosis and some other condition completely or that the endometriosis is at the early stages and wasnt visible (remember stages and symptoms dont have any connection aswell) dont give up because you know your body best and maybe try pushing to be refered to and endo specialist. Oh also I was told by an gastroenterologist consultant that I definitely had IBS and it was very unlikely that they would find anything endo related during surgery as my symptoms perfectly fitted IBS in his view. Basically you know your symptoms and body best and dont let the doctor tell you otherwise! X

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My gynae asked me if I wanted to "just back out and live with the pain" before going into my surgery which didn't fill me with confidence haha.

Thanks for the advice, I'll keep looking into it and prepare myself with info for my appointment in 4 months xx

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I had this, and I’m still fighting for a diagnosis, they pushed mental health on me, but I know bleeding everyday isn’t in my mind, if you ever need someone to talk to I’m just a message away, and remember only 24% of women under the age of 24 have visible endo, so yours could just be on a cellular level, did they take biopsies? If you need any support (did the hospital offer advice or support?) sending hugs, you’ll get there, ❤️

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I have barely any information so I don't know if biopsies were taken or anything, I'm not even sure where they checked as I requested they check near my appendix because that's where my pain has always been near but I only have 2 incisions - one along my belly button and one along my pubic line (tmi?).

Thank you xx

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I only had two incisions aswell , I freaked and was fuming after my op cos there was only two incisions and he said he’d checked everywhere, the tools are very long apparently and that’s why they can reach around everywhere for a peak, I felt so stupid going to a doctor about that🤦🏻‍♀️ they clearly believe it’s gynaecological if you’re seeing them in 3 months and if they did take biopsies you might get results then, and they’d also hopefully show you photos, stay optimistic and don’t give up x

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Thanks for the reassurance, yeah that's true about them wanting to see me must mean they think something, right?

Thanks xx

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Biopsies?! I didn’t know they could do this!! I’m wondering why my gynae didn’t take them when he said he couldn’t see anything and it was probably on a cellular level - Hmm, cost saving, perhaps?

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They didn’t do biopsies with me and I went private believe it or not, I wholly believe it all depends on the surgeons x

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I think it’s understandable that you would want an explanation for your pain and suffering; and no I don’t think it’s your head. My ex GP made me feel like that and it’s so demeaning 🤬

Did your surgeon check other organs -not all endometriosis grows on pelvic organs? My endometriosis is on pod- and some is on my bowels; I’ve had two laparoscopys and I’m now being referred to an endometriosis specialist.

If the other organs were checked perhaps you should consider going down the bowel route. My fertility specialist said gynae vs bowel are very similar and are impossible to tell apart ( initially before he found endometriosis he thought my issues were bowel in origin)

Don’t feel like you’ve wasted anyone’s time or money; you needed to rule endometriosis out and unfortunately the only way to do that is via laparoscopy.

In time you’ll be happy to know it’s not endometriosis; you don’t want this hideous disease.

When you are feeling stronger push for more investigations.

All the best with your recovery xoxo

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I'm not sure what was checked at all and I have to wait 4 months to discuss with my gynae more information and next steps as the nurse said there was barely any information on my operation notes.

Thank you so much xxx

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I'm another one with a clear pelvis after my lap 3 weeks ago. I felt more confused then anything and very disappointed how it went after.

Right now you need to concentrate on getting yourself better and then refocus as to where you'd like to go. Have a chat with your doctor to see the best route to go down.

Unfortunately I was with general gynae and I don't feel 100% convinced by the results. My doctor has been amazing and is writing to find out exactly what has been checked and is referring me to a specialist. Once I feel happy that I don't have it then I shall move on.

Also my uterus hadn't been checked, was yours?

Try and get lots of rest and just enjoy Easter. Here is you need a chat x

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Unfortunately my gp is pointless is just going to have to wait the 4 months to see what gynae thinks.

I've got no clue what was checked so only time will tell.

Thank you xxx

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Oh it's good you have a follow up and maybe something will come of that.

Hope you're feeling a bit better x

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Thanks x

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Here is a silly question. But i feel the need to ask it.

A lap....does that show the back of the uterus? Can it see all the way round the womb or does it see inside it?

Did you go to a endo specialist? Maybe you should go speak to one....if it turns out its not endo congratulations on that. But i understand the upset. I was terriffied that they wouldn't find anything....because that would make me feel like all the gps and general gynaecologists were right and it was just "period pain"

Endo symptoms are very similar to other conditions which is why it takes SO long to get a diagnosis.

When you are feeling a bit stronger maybe seek an endo specialist and have a word with them, if they agree with the general gynaecologist then ask them whom you should speak to next.

Dont give up on yourself. You deserve answers. And sometimes the only way we get them is fighting.

Heads up.

We are here whenever you need us.

X

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Both of my laparoscopys showed endometriosis on the back of my uterus. A laparoscopy will not show the inside of the uterus; a hysteroscopy will show the inside of the uterus in more detail; you can have both done st the same time; I did. Hope this helps xoxo

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Thank you. That helps. It makes the above easier to understand.

Btw mine was at the back and up my fallopian tubes and on the right ovaries.

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Glad 😊Endometriosis is such a horrible debilitating disease. Hope you are having some relief from the surgery xoxo

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Hiya,

I believe my gynae was an endo specialist but I'm starting to doubt my research as I had it done in a normal hospital...

Feeling more positive today, gonna slowly try and figure out what to do etc.

Thanks xx

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It took 3 laparoscopies before they could see any lesions in my sister in law.

Besides, what they see is NOT proportionate to the pain!

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