Mixed emotions..

[Ruralquirks]

Hi everyone,

So I'm feeling very confused and down by all of this. Two weeks ago, I had my MRI scan, and I haven't heard anything so I plucked up the courage this afternoon to call and email the hospital. When I got through, they said they will find the consultant's secretary about my results. An hour and a half passed and she finally calls me as she 'forgot' and that the secretary isn't in and for me to ring on Monday and that she has left a note for the secretary.

I'm feeling that because they haven't rushed to tell me, that nothing has shown up on the MRI. But, I'm also feeling confused because if nothing has shown up, and then I do decide and the nurse does to go ahead with the laproscopy, that then nothing shows up on that either, and I would have wasted time.

I'm just feeling very confused and down about all of this, and the fact that I now have to wait until Monday morning as well isn't nice.

Any advice would be greatly appreciated. Xx

[kelsbels88]

Hi

I’m sorry you’re feeling like this. I know the being pushed back and waiting is awful.

Firstly, it’s crap that they didn’t get back to you with a result although that being said I had to chase nearly every test or scan I’ve ever had.

Secondly, you are not alone, probably all of us have had this at some point on our journeys.

It’s not easy. Endo doesn’t always show on an mri mine did but it was very severe and affected my bowel which was why they could see it. I had several ultrasounds and cts which didn’t find anything before that.

You may be right I. That they haven’t rushed to tell you because there is nothing to tell.

Please excuse me but are you still in the exploratory phase of your journey -still awaiting a confirmed diagnosis? If so I would say still potentially have the surgery. I now know that if I hadn’t had my first op I would have had months and months of heartbreak afterwards. From my first surgery not only did they find endo and confirm a diagnosis but they also discovered that both my tubes were blocked and my organs were fused together. Therefore explaining what was going on. I would of had months of heartache from trying to conceive and not getting pregnant. Without that operation.

So although it may not find anything at least that will rule other things out. You do need to make sure your dr knows how to find endo though as some gynaes do not know what they are looking for and so can miss it.

Take time to look after yourself

Any questions ask

Kelly xx

[Ruralquirks in reply to kelsbels88]

Hello, first thank you for your reply. 😊

It's really awful isn't it! I know they say it can take 1-2 weeks for MRI results but I mean it could have been there for days and they haven't bothered to tell me!

I'm still awaiting a confirmed diagnosis. On Monday I will call them to find out mt results and book a follow up appointment with the nurse and hopefully go from there. I feel it may be affecting my bowel as well as I do get a lot of bowel symptoms, or it could be IBS.

I have had an ultrasound and an internal ultrasound which didn't find anything and that my ovaries look fine.

I'm so sorry to hear what you have been through, that sounds awful and I wish Endometriosis was more understood and recognised quicker. 💛

Thank you so much!

Xx

[kelsbels88 in reply to Ruralquirks]

Haha 😂 I won’t bore you with all my story but I have commented on many posts you may be able to find them if you wish.

It’s true sadly mri takes the longest to come back I think. But still. It’s shit that we have to chase all the time.

I have literally just commented elsewhere but do a pain diary. It will go towards proof (not that you should bloody need it). Record as much as you can. Rate you pain from 1-10 I found I had intolerances so couldn’t have caffeine, or milk only skimmed etc. intercourse does it hurt? Do you bleed? I used to be fine in the moment but get agonising pain the next day. I had it on my bowel, which was bent on its self in an angle it should not have been and this started causing an obstruction he said if I hadn’t had my surgery when I did it would have bordered on fatal. Quote “doesn’t bear thinking about” was his response. kept that quiet to the fam.

They tried to diagnose me with IBS but because I was doing the diary I could prove that wasn’t the case. I pinpointed when my pain happened. 2 days before my period, 4/5day of my period and then 2 days after my period and also 4-6 over ovulation. It was a lot. Don’t talk to me about pain during bowel movements I still remember the 2 times I nearly passed out on the toilet from the pain.

It is not as recognised as it should be. My consultant is a specialist gynae wouldn’t touch me because of the bowel let alone the blocked tubes, and my ovaries stuck to my bowel and that stuck to my uterus. So I saw a specialist BGSE endo consultant. If your bowel is potentially involved you may need one of them instead.

I only found my endo because we were TTC. I now make sure I spread my journey to help ppl who haven’t yet been diagnosed feel a little less alone and plaster my fb/Instagram with endo stuff because I am that 1in10 ssstistic and if we don’t fair about a female condition who will. Makes care but can’t always fight because they don’t know how it feels to live with it.

Please feel free to contact me if you’d like.

Be kind to yourself and try not to be too harsh on the secretaries I know how shit they have it as the go betweens.

Kelly x