Looking for help/advise !! Please :)

[SMR23]

Hello, I’m new to this site. Just looking for some help/advice really

I haven’t been diagnosed with Endo at the moment just in the investigation stages.

I have always had trouble with my stomach ever since I was born (I am now 25) the doctors have always said it’s IBS and I would grow out of it... it never happened.

I then found the FODMAP diet and found my trigger foods, onions, garlic, peppers beans pulses. So any flavour basically 😂 and found that this did relieve some of my symptoms of bloating, stomach cramps, constipation & diarrhoea. For a little while but...

After a recent smear test (which came back fine except an abnormal bacteria that had to be treated with antibiotics) and explaining problems I have been having such as:

- irregular bleeding (spotting)

- Pain in my left side especially when going to the toilet (1&2)

- Pain during intercourse

My doctor gave me a pelvic examination which she found nothing expect tenderness in my left side, I was sent for a ultrasound of my womb.

This all came back clear but after a long wait to get my results I was still experiencing pains constantly and noticed a pattern of what was happening.

When I was randomly bleeding I found my symptoms where really server, my stomach cramps where extremely painful and would take me off guard.

The pain In my left side would gradually get worse after food. I would also get rectal bleeding whilst gong to the toilet.

I also found I lost weight extremely quickly without trying and found I experienced a lot of dizziness and my temperature was very hot.

No idea if this is connected but I’m getting pain down my thighs to my knees & in my lower back.

I feel like I am falling apart for a 25 year old, and the thought of having a potential operation to see if their is anything wrong is freaking me out.

Just wondered if anyone could give me advice on how they got diagnosed ? I don’t really want to have a op if I don’t have do.

Are MRIs just as effective of finding the answer ? & do ultrasounds of the bowel help diagnose Endo ?

I feel Endo is a massive vortex and have no idea how to start looking for answers or even if I have Endo 😂

Any Help would be very much appreciated. Thanks

[kitscat]

I think the gold standard for diagnosis is a laparoscopy and they can treat the adhesions (scarring) too. I’m not sure about an MRI but lots of the ladies on here seem to have had one. USS are only good at looking for cysts or assessing the lining of the womb. However endometriomas are diagnostic for endometriosis. I don’t think an ultrasound scan is used to assess bowel endometriosis.

I had a consultation with an endometriosis specialist which helped answer a lot of my questions 😁 xx

[SMR23 in reply to kitscat]

Thank you for your advise. Xx

[AllthatGlitters]

I believe you need to have a laparoscopy to get a diagnosis confirmed, it’s not as scary as you think to have it done, I think it’s more the thought of it that scares people. My MRI showed that I had adenomyosis, the ultrasound picked nothing up. Keep going to the doctors as if you feel something isn’t right within yourself, then you are probably right, we know our bodies better than anyone. You will find lots of support on here too x

[SMR23 in reply to AllthatGlitters]

Hey, thank you for the advise, I think I’m going to go back and get another opinion and try and find a Endo specialist x

[Ginge32]

Hi,

Your symptoms sound very similar to mine - and I have been experiencing mine progressively worse for about 17years.

I too have been fobbed off with IBS diagnosis and over the counter treatments, which did little to relieve my symptoms.

I’ve had lots of ultrasounds over the years which never showed a thing and so my GP basically sent me on my way. Only changing GP’s has got me on my journey!

Recording your symptoms in a diary might be a good way to demonstrate what you’re going through - but ultimately to determine it I believe a laparoscopy would be the only conclusive method.

Good luck x

[SMR23 in reply to Ginge32]

Thank you so much for sharing your story too x

[Mparstoy]

I am sorry you're going through so much. It is even scarier when you don't know what is going on. If you don't want surgery than it tends to be a process of discarding everything else. At the same time, with all the symptoms you have, an Endo specialist would probably say there is a probability that it could be Endo. The only reliable diagnostic at this time is a Lap. Reach out to an Endo specialist to get an opinion. I wish you all the best!

[SMR23 in reply to Mparstoy]

Thank you for your reply, just need to find an Endo specialist now 🙈 x