undiagnosed- possibly endo?

[Daisyfloralfly]

hey, I’ve been chasing a diagnosis for my symptoms for years. I’ve been told to cut gluten out my diet and that this is a food intolerance. I’ve kept a food diary and can’t see any correlation as I have long periods where I can tolerate all foods 😞.

Symptoms

My periods are quite painful although regular. Recently when they start it’s black for a few days, then goes away for a day. When they properly start they’re really heavy. Sometimes it’s so painful I can’t move but I also have times where it’s fine.

I have pain with bowel movements in my lower tummy sometimes. Right where my uterus is.

Without warning I will be hit with extremely painful bloating. I’ve had a baby (12 years ago!) and it competes with labour pain. There’s no pattern to this except it never happens during my actual period. I’ll get bloating but not with that specific level of pain. I can’t stand up straight with it. It often reduces me to tears. Nothing takes the edge of the pain.

I’ve got a chronic itchy rash and have started developing mild allergies. All blood work is fine.

Are there any other symptoms I should look for? Does anyone else experience these? Any advice? Thank you 😁

[Cailleach]

Most of these symptoms sound like they could be endo - the extreme pain with periods, bloating, pain with bowel movements. Not the rash I don’t think.

I think Endometriosis UK will have a list of symptoms on their website for you to check.

Is your GP not helping? Maybe try and see a different one and ask them to consider endometriosis and for a referral to Gynae. They should also be able to give you pain relief for the flare ups. It might be worth looking at the NICE Guidelines for Endometriosis (Google will get you there) for the recommended treatment pathway.

Hope you get some help x

[Daisyfloralfly in reply to Cailleach]

thanks so much. Is it normal to have no pattern to the symptoms? They’re definitely worse during ovulation. I’ve read if

You have endo you’re more prone to allergies so I think it’s an allergic rash. Assuming I need a laparoscopy to confirm? My GP is so unsure but they sent me to gynae who said they didn’t think it was endo. But they only did scans.

Thank you for replying 😀

[Cailleach in reply to Daisyfloralfly]

If it was an ultrasound scan you had, that can show endo but often doesn’t especially if the person doing it is not specially trained. Having a clear scan doesn’t mean you don’t have endo.

Your pain being around ovulation could be because of where the endo is located eg the ovary or fallopian tube. You did say that you get a lot of pain at your period but not every month, again that does not rule out endo if it is not every month. I definitely used to have some months that were much worse than others. You could also have bowel involvement -maybe adhesions that cause pain when you move your bowels -I have this.

It might be worth trying to get referred back to a gynaecologist who has some extra training in endo. Definitely have a look at the NICE pathway to see what your GP / hospital services should be offering.