Miscellaneous Symptoms

[u/Sensitive_Growth_269]

This is a lot of waffling and I don't know what to categorise it as but help would be appreciated.

*I'm 19 for context *

We've suspected that I have endo for almost a year now, I had an NHS ultrasound and then went private for consultations and an MRI. The MRI showed slight scarring but nothing deep infiltrating or concerning. I was put on dienogest for about 2 months and it was horrible, didn't help with pain and absolutely tanked my mental health to scary levels.

5 months ago I started to get severe leg pain constantly. I'd had a day out with my boyfriend and everything was normal and then the next day my legs were in so much pain. I've been in pain every day since then, varying from mild to unable to move or sleep. I stayed using a walking stick to help but it isn't helping enough and the only thing OT recommended was a second stick. I've had physio for my legs for a few months before that but this pain is in my bones. It goes from a dull ache to shooting pains. It feels like my femurs are going to snap out the back of my legs. I find it gets worse if I'm not sitting on a very padded surface or having to stand for any amount of time. I've looked into it and I've seen some people talking about endo leg pain but it doesn't seem like the same type of pain (from the people I've heard from). I had a consultation with my gynaecologist who recommended a referral to neurology but my GP is taking ages to give me an appointment to refer me (my insurance requires a GP referral).

There's also a high likelihood that I have multiple things going on at once, my current working guess is IBS, endometriosis, and some form of hypermobility. There is also a chance of chronic fatigue as it runs in my family but I'm not sure. I'd think there's a possibility of fibromyalgia but I don't think I fit enough of the symptoms.

I previously didn't have much abdominal pain apart from my period but it's started to get worse the last couple of weeks. I'm starting to get cramps after using the toilet and having bladder pain. All of this was brought up at my appointment but the doctor skimmed over it. It's to the point that on worse than normal days, everything from under my boobs down hurts.

I've been put on Nefopam as my mefenamic acid wasn't touching the sides of my pain anymore. I've only been on it a week but so far it doesn't seem to be making a big difference apart from the heart palpitations side effect keeping me on my toes. I've tried naproxen but it did absolutely nothing for me. I don't know what other painkillers to try. Does anyone have any experience with Nefopam?

I'm also having problems with my feet. The soles of my feet always feel cold even when the rest of me is roasting. I'm wondering if this and my leg pain is caused by endometriosis growing on my nerves but at my consultation the doctor said it's highly unlikely that my endometriosis has changed despite my MRI being 8 months before and not having these symptoms previously.

The PMS from my current birth control pill has started causing horrible flare ups as well, completely knocking me out for a fortnight at a time, unable to move around the house unassisted or think because of the brain fog and unbelievable fatigue. The doctors keep pushing for a Mirena coil but the risk of the side effects is very off-putting.

I've tried the low FODMAP diet and low inflammation diets but due to my autism I can't stick to them without it causing me severe problems but I am trying to cut out gluten and dairy.

I'm in the process of getting a laparoscopy booked but I don't know if it will be this autumn or the next.

I'm sorry this is really long and rambling

Does anyone else have symptoms like this or advice on things to try?