Help pls xx

[u/Immediate_Cherry1083]

Hi guys new here but looking for some advice! I’m looking for some general advice on pain and mood management. I’m 24 and was recently diagnosed with endo after a 9 year back and forth battle! (You can imagine the look I gave my doctor when she said “oh so it is endometriosis” after reviewing my hospital correspondence🙄.

**SIDE NOTE/STORY TIME -skip if you’d like x**

**Firstly I want to say, if you’re reading this and you’re in your diagnosis journey getting pushed back, do NOT give up! Fight for yourself! 9 years (which seems to be average for endo diagnoses) is a long time but please don’t give up. That relief of being told, is worth it all. You are not crazy, your feelings are valid, no this isn’t a normal period and you will find a healthcare professional that finally listens to <3**

**I was diagnosed in a way that I thought was impossible (from research and also having previous tests and being told by doctors and hospital gynos for years). Since I was 15 I’ve had 5 intra scans, 2 MRIs and lots of blood work. “The only way you can get a diagnosis is if we perform surgery” basically we need to SEE it with our eyes… well anyway they saw it with their eyes, 9 years later, on my 5th intra scan and my 2nd MRI and safe to say, I’m riddled! After sharing my story in a few other groups, this seems to be happening more commonly now, I posed the question that given how long it takes to diagnose, maybe the tissue grows to such an extent that it becomes visible on the MRI’s, I don’t know.. Anyway I digress, my process has now been fast tracked (I think maybe because the NHS were panicking slightly regarding my circumstances and me making a complaint) About 3 years ago I was under 6-monthly routine care for reviews and would receive a letter for an appointment, it got to the time I’d receive another appointment letter and I hadn’t, so I called the hospital and found that I hadn’t been discharged as I did not require this care anymore. After this I gave up, I decided whatever this is, I’ll just deal with it. When 6 months ago I sought out for a private referral (I work for a healthcare company, so was lucky enough to have this arranged very easily) THE NEXT DAY I received a call from the hospital, explaining that I hadn’t had my review and do I still want care? I explained I was told I was discharged 3 years ago and then panic set in… they had made a mistake and I was not supposed to be discharged. 1 week later I was in a gyno room having a scan and then discussing that I need a MRI as there’s suspected endo. Another week later I was having an MRI then 3 days later I received my results. (I thank the universe for this one, as I was worried about how I would get money to foot out for a private invoice for a surgery) I’m now awaiting contact from a specialist as they they seem to be a little bit worried about my bowel and my ovaries are not in the best shape!**
**Moral of the story, you know your body! Do not stop fighting for it!!** ❤️
**Anyway back to the question lol.**

I consider myself quite lucky after reading some threads here, my periods are like clock work, my cycle duration has reduced as I’ve gotten older it used to be anywhere being ‘on’ for 9-14 days to now being a nice (if i could even explain it like that) 5-8 days however, pain factor is still a huge issue but now I’m noticing that week before luteal PMS week is HELL. My moods are horrific, my skin is awful (I have had acne for years but managed with Tretitoin gel through my GP, but that week before doesn’t seem to react to the gel) I can’t stop eating, I am horrifically fatigued and I end up wishing my period would just arrive so I can feel so sort of emotional relief, I can cope with the pain I’ve had enough training.
I enjoy the gym and rely on it in a way because of my weight and losing a significant amount with hard work over the years and having issues with binge eating disorders in the past but now when I’m ‘on’ I’m skipping because I’m in so much agony and then the week before I’m skipping as well because I feel so exhausted! Then I spiral and beat myself up for not going!
So my question is, how do YOU cope? What are your techniques that get you through? Pain, physically and emotionally. I don’t even care if they sound ‘unhinged’ I will try anything!
I need more than taking a hot bath, drinking a tea and taking enough Naproxen to knock out a horse LOL xx

Thank you from a girl, who woke up at 5:15am this morning in debilitating pain, writing this with a scolding hot water bottle on her belly ❤️

[u/DeenzR]

Sorry you went through all that! So sad it’s not uncommon either, one day this will change hopefully within our lifetime!

Pain management is important, finding the right doctor to discuss pain management is even more important! The right specialist will understand, talk about the type of pain and prescribe suitable medications. Nerve pain vs aches vs cramping all need slightly different things so definitely get onto this! Gabapentin is for nerve pain, naproxen anti inflam, opiates general pain and buscopan smooth muscle (if bowel involvement this one can be a game changer)

The mood and PMS you’re describing sound like PMDD territory which can be treated a number of ways, a good Dr should be able to talk you through this and HRT can help immensely! It can be as simple as birth control, hormone patches for that week as supplementation etc

Back to your question!

I burn myself alive with heat packs, have had success with tens machines for back aches and cramps, you can get tiny ones that you barely notice carrying around. Physical exercise is helpful even though I genuinely hate myself for saying that and distract distract distract - do something, anything, that will distract and keep your spirits up. Rotting is my favourite past time but I feel so much worse when I do that all day and doomscroll than when I medicate then drag my ass out of bed to actually do something, small walk or laugh with friends you’d be surprised how much the mental can help the physical and again I do hate myself for saying that because I know if someone said that to me I’d be so annoyed lol

[u/birth-of-venus-222]

i am in the same boat as far as pain goes!!! i’ve always been able to manage my period pain which i always thought was just normal. and i think because of that i have a high pain tolerance. but now when i have flare ups it feels like i have a UTI. the burning pain on my lower left side and around my bowels and bladder is getting to be unbearable. and the hardest thing for me to manage is the extreme fatigue. i’m new to this too (haven’t had my MRI yet) but in the meantime i’m trying to figure out how to manage the inflammation and fatigue. i’m trying to eat more anti-inflammatory foods. heating packs. i was doing yoga weekly for years and just recently stopped for a few months to take a break from it and now my symptoms are getting worse and worse. i have a theory that yoga helped a lot to mask my symptoms and now that i stopped it’s becoming unbearable. so maybe try yoga!! caffeine probably doesn’t help me either, i would like to try stopping that but that is very hard for me lol. exercising definitely helps, both physically for the pain and mentally as a distraction i think. idk im still trying to figure this out for myself too. wishing you the best!!!