Symptoms

[Jess-Storey]

I was diagnosed with a form of colitis 2 years ago and the type of colitis I have is specific to the colon area however during the time I was diagnosed and now all the symptoms I experienced often get worse when I am due on my period and when I ovulate. I will try not to make this long winded but a lot of the symptoms I experience fit endometriosis symptoms e.g. bleeding belly bottom, back issues, leg issues, fatigue, diarrhoea, constipation, cold feet all the time, painful period, vomiting etc. My gastroenterologist has said he can't do anything because it's not to do with my bowel which I understand but I am a month late and have within the past 10 days have started to bleed from my behind (bit TMI but hey ho). I was just wondering if anyone has any advice on what steps I should take to getting things sorted and if anyone has endometriosis of the bowel if they could list there symptoms or message me please. I am 17 and doctors keep saying I am too young to undergo a laparoscopy so I just feel quite stuck.

Thanks ☺️

[weekari]

Oh you poor thing. That could certainly be endo. I'm not a medic but I can't think of other reasons for bleeding from the belly button & bum during your period. Your consultant should be referring you to gynae. If they won't do that or you're not due to see them, tell your GP you want referred to gynae. Your GP can do it directly. I'm afraid the wait for gynae is usually quite long but the sooner you get that referral in, the sooner you'll be seen. It shouldn't be the case but I'm concerned Dr's may treat you differently because of your age. Do you have anyone that is supporting you who could come to GP appointment?

While you're waiting, it'll be helpful to build up a little bit of knowledge about endo. This is just one of those illnesses where a lot of Dr's don't know that much and we often have to guide them. It sounds like you have a lot of bowel related symptoms and if this is case, you should be seen by an endo specialist centre. You can read the NICE guidelines on endo (if you Google nice and endometriosis, it should come up), which is what the drs use to know the pathways for illnesses, this can help you make sure you're being treated properly.

Have you recently had any scans? (ultrasound, mri, ct scan). If not, your GP can refer you for an ultrasound. I would ask for this while you ask for your referral to gynae. It doesn't often show up endo but would show cysts and fibroids and could give useful info for the gynae referral.

The reason they'll not want to do a lap at your age is because surgery causes internal scaring which can cause pain and may impact fertility. But that doesn't mean you don't get a choice and it doesn't mean you get no assessment or treatment. Also, the gastro Dr isn't the person to decide this, as its not their speciality. They should have referred to to gynae!

If I were you, I would demand an mri. Mri can show endo, that's how I was diagnosed. It's quick, painless and has no side effects. If there's no endo on an mri, it doesn't mean you don't have it.

While you're waiting for all of this, there are things that could help. Lots of people benefit from making a few changes to their diet, like cutting out gluten and dairy. They are both foods that can cause inflammation and can affect hormones in our body. Endo is ultimately a disease affected by our hormones.

Just keep coming back in this site for any questions. People here have lots of experience and can support you. There are lots of ways that endo can be treated and if you are able to, build up as much knowledge as you can.

I hope this helps. Xx

[Jess-Storey in reply to weekari]

Thank you so so much for your reply. It means a lot.

My mum comes with me to everyone appointment but it never seems to make a difference every GP has just told me to try different pills or have made ridiculous comments like 'I haven't had periods long enough' or 'you don't have heavy periods if you have endo' (eye roll). I have booked an appointment with GP again to get a referral to a gynaecologist and recently had an ultrasound but nothing was found.

I've never heard of googling the NICE guidelines so that will be really helpful, thank you. I am currently on a no gluten diet as I have a gluten intolerance so hopefully that has helped 🤞

I suffer from anxiety as a result of the unpredictability of my periods and bowel habits so I just wish I could have some clarity on what it is causing the issues.

Thank you again ☺️xx

[weekari in reply to Jess-Storey]

I'm so sorry about how the GPs have been with you. At least you know they're wrong though. So many of us, me included, have just accepted what we've been told only to later (2 years later in my case) find out that it wasn't true. Of course you can have endo at any age,the amount of periods you have had is irrelevant and so dismissive to treat you this way. I'm afraid it's just a case of persisting. You either just keep going back to the GP until they refer or try other GPS.

My endo specialist centre doesn't accept referrals from GPS, it had to come through gynae but some do accept it from GPs so that could be an option to try too. I'm sure if you go in armed with guidelines and show them how you met the referral criteria, they'll have no option but to refer you.

It's great your mum is supportive. I'm 40 and find it hard enough to fight my corner, it's much better when we've got someone backing us.

Good luck. X

[Lynne_support Partner Endometriosis UK]

Hello Jess-Storey

You could ask for a referral to a BSGE accredited endometriosis centre, these have gynaecologists who are experts in endometriosis. A list of the centres can be found on their website bsge.org.uk/centre/.

Best wishes

Lynne - Endometriosis UK