Please help!

[Elbowpuppy]

Hi all, I have written down a list of my symptoms - could you all advise if this sounds like endo please (I know you’re not doctors but I need some validation). For background - I’m 24 and have been having the pains since 2019. I have been for ultrasound which they said I had what they look for when doing uss for possible endo (the sticky substance) so just assumed I had it? Then finally went to see the gynae consultant at my local hospital and she told me it was IBS, that my symptoms didn’t sound like endo. I was so confused because she mentioned about changing diet etc but because I can go months without these severe life debilitating pains - I don’t think IBS would be the reason why. Especially from where the pain is - it’s just like a really hightened period pain (which I also get period pain but not as bad as these pains). She also said nothing was found on my ultrasound scan.

Here are my symptoms :

Severe pain in pelvis/lower stomach by c-section line. (Not had one or children but where would be) Comes on all of a sudden. I get all hot and sweaty. Need to breathe through the pain. Sometimes pain is so bad I start to wretch and am sick as a result of this. Lying down helps if pain is at a decent level. When worse, have to go to the bathroom as not sure if as pain is so bad it will result in me having to be sick/needing a poo. Pain usually lasts anything between 10 mins and 45 mins. Eases off slowly. I am completely fine after the pain. I can not have one for hours, then be hit by another one. Woken up in the middle of the night by the pain. The pains come whenever - there isn’t any correlation or regulation with them. When I do get the pains, they come and go each day and usually last around a week. I can not have the pains for months and then suddenly have one. The pain is also caused by orgasm sometimes - however again this isn’t all the time.

I’m really at a loss and I’m so confused on what’s going on and why I’m having these pains. Any help or advice would be welcomed. I have made another appointment with the gynae dept but the soonest they have is in February 😩. Also to note, the gynae I saw apparently was only covering and usually does obstetrics. Could this factor in? She was also quite rude when I look back at it.

Thank you

[Tangoandmax]

Hey,

In my experience ultrasound have been a waste of time unless carried out by a specialist/someone with a special interest - I’ve lost count of the amount I’ve had over the years. And only the most recent was fruitful, carried out by an endo expert who confirmed Adenomyosis. It’s taken me 8 years to get a diagnosis, I’ve just had my first surgery to remove endo, detach my organs.

I was also told by my local hospital gyne team that I had IBS. Two separate referrals. I only got as far as ultrasound with them on both occasions. However I did not meet criteria for digestive investigations, it’s very easy for them to brush people off with it. They were very wrong. Pain whilst orgasming is not normal for IBS as far as I’m aware. I also had this which progressively got worse, we eventually stopped all intimacy as it was too much to bare, I was close to passing out.

My advice would be:

Record all symptoms, day by day. Go in armed with everything on every date so you have anything and you can see if there are any patterns.

Now IBS has been thrown out there, try to make changes to diet where you can to prove pain/symptoms still occur despite changes to diet. Let them know you have done this during your appointment.

Request scans are carried out by people with experience of endometriosis, if you can (this may not be possible but without likelihood is they’ll be normal unless endo has progressed to cysts on ovaries as this is an easy spot for basic sonographers).

DO NOT let them fob you off and blindly trust them when you know something is wrong. I did for about a year and regret it every single day.

I don’t know if you’re in a position to pay privately but if you can, paying privately for a consult/MRI would be the best bet to go round the GP/local hospital. I was provisionally diagnosed in Feb from and MRI. It’s a much better tool to see what’s going on.

Hope this is helpful. Sorry to hear that despite all recent publicity they are still not managing to investigate symptoms properly and leaving people to suffer, it’s awful.

Best of luck xx

[Chronic21]

They thought I had cancer first, then ibs then I just got passed from department to department. Nothing ever showed up on any scans other than a cyst. Scans as of today can not diagnose the majority of endo cases. If the Dr stating that to you please please request a laproscopy (sorry I'm dyslexic). If they deny don't sit back and take it ask if they are upto date on the latest research, if they answer yes then say if that's the case you will know that majority of endometriosis tissue cannot be detected by things like US MRI and CT scans. The only definitive way is via surgery, that some endo should be removed and that there are currently 3 different types of endo which act differently and should be treated differently to avoid more complications. So as my symptoms line up with endometriosis is it not in my best interest to go forward so that it can get treated correctly? And if it is ibs and not endo can you state your reasoning as to why you believe this is the case as alot of the time endo is confused for ibs and visaversa due to the similarity in the symptoms, however i believe endo fits more due to the irregularity of the symptoms

[bluebug]

In regards to your symptoms other posters have given good advice.

I am just pointing out it's normal for some consultants to be rude/lacking in bedside manner and dismissive even if you have issues within their speciality. They also come out with some nonsense as it's unlikely you have your own chaperone sitting with you. (The nurse who is there isn't going to say anything as they are desensitised to it plus they value their job.) I always find in general junior doctors have better manners.

[Needaholiday101]

I'm sorry you are going through this. I had two ultra sounds in about a month. First scan said no ovaries are moving freely no endo visible Second scan your ovaries are stuck down and we see signs of endometriosis

My consultant said I can be experience ibs symptoms with endo due to pain etc.

I would contact patient liason service and explain to them as its not fair to be left like this.

Xxxx