I am so frustrated I want to cry .... - Endometriosis UK

Endometriosis UK

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I am so frustrated I want to cry ....

MegTweed profile image

I’ve just had a call from my dr at the BSGE accredited centre about possible surgery. Basically I was diagnosed with mild endo about 4 years ago and a year later I had another op but no endo was found.

He has told me that because of this, there is only a 20% chance he will find endo in the operation and that ‘this happens alot’.

I am in so much pain every single day. I am so frustrated I could cry. There’s just no hope.

Has anyone else had a similar situation?

11 Replies

What a run around you're having. It's so frustrating, when all you want is a clear answer and something that will actually help you.

Who did your 2 previous surgeries? Were they endo specialists? If not, then I wouldn't take them to mean that much.

I had a lap 2 years ago and was told I didn't have endo but had an mri this year and was told I have severe endo. I'm still trying to get more information on it all as I've only ever spoke to the general gynae who did the lap, who clearly doesn't know that much about endo.

MegTweed profile image
MegTweed in reply to weekari

Thanks for the reply. The last two operations I had were not by endo specialists, they were general gynaecologists. That’s what I thought about not taking their results as what it is but for the dr at the BSGE accredited centre to say that he doesn’t think he will find anything is so frustrating. Why am I in so much pain then? When he examined me he said he couldn’t feel any nodules but that my pouch of Douglas is tender. I have all the symptoms of endo on the pouch of Douglas so why is he now saying something completely different! :(

weekari profile image
weekari in reply to MegTweed

I honestly have no idea why they say this stuff as they won't know until they look.

I've been told by 3 consultants that I didn't have endo, 2 of them were just going on my symptoms as they literally hadn't even touched me. I've also been told by 2 consultants that my Fibroid could not possibly be causing me any symptoms. All of this I'm now finding out if completely untrue. I do have endo and my Fibroid is in my pouch of Douglas, 13cm big, 7cm leison inside it thats bleeding and it's pressing into my colon and spine. It's exactly where I've always thought all my pain is coming from. After 2 years of them telling me I wasn't experiencing this, now they just flip and say yes, you now have these things but no recognition that they were there all along and I had to fight to be believed. They don't recognise how damaging it has been to be not believed and dismissed all this time.

I think we have to trust our knowledge of our own body. Trust what you feel and don't allow some persons BELIEF of your pain, cloud your knowledge of your body. You know there is something not right, you just need them to look properly and tell you of its endo. If it's not endo, there will still be a reason for your pain. You're not crazy, you're not making it up.

Was the consultant trying to put you p off getting the lap?

MegTweed profile image
MegTweed in reply to weekari

Your right. I know my body and I know how much pain I’m in. It’s so frustrating isn’t it. This has been going on for years and years now, since I started my period at 13. I’m now 25, 26 in a few weeks. Rubbish.

weekari profile image
weekari in reply to MegTweed

It's shocking. That's half your life! Just don't give up and don't let them make you doubt your experience. X

Hi Meg, sorry you're having a rubbish time at the moment. I'm also in a flare where I'm experiencing pain every single day, so I completely understand. I'm on the waiting list for a third laparoscopy and am only 30. The same as you say, I've had pain since I was 13 more or less.

I would say try not to worry until after you've had the surgery and the surgeon has had a look inside to see what there is. I had surgery 5 years ago & it was fairly extensive, which they never would have known from the outside. I more or less have IBS symptoms but I know it's endometriosis as when the endo is controlled I don't get stomach aches!

There is definitely hope for you, especially as you are being seen at an accredited centre. If there isn't endometriosis present, then that means one cause of your pain can be ruled out and you can work with your GP to establish what else might be causing you pain.

Good Luck x

Thanks for the response. It just seems odd if it doesn't turn out to be endo because I was diagnosed with it a few years ago so it just does not make sense! I was diagnosed with it on my right side and that is where all my pain is. I guess I won't have anymore answers until the surgery like you say. Sorry you are going through what seems like hell also. Why do us women have to suffer to much! x

I had an ultrasound a couple of weeks ago that was clear but I've had a good discussion with my consultant (who operated on me last time) and he luckily agreed with me that it is almost text book endometriosis. Like me, if you've suffered before then you know your own body. I *knew* that this was endo rearing it's head, and similarly to you, I hope there is some present otherwise I have no idea why I'm in all this pain!

I hope you find all of your answers too. Thank you everyone for the support. Sometimes it is needed to have a rant. I was in such a state after my phone conversation that I phoned my mum and just burst into tears!

It just helps to let it all out!

I've rang my Mum & cried so many times in the last 6 weeks.

But just remember, you have been well previously & will enjoy good health and feel well again. This isn't forever!

I just wrote a new post with a letter that I am going to read out to the BSGE dr at our next appointment - let me know what you all think x

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