I am just so sick of this, of putting up with excruciating pain. When I'm on my period is when I get the pain. It lasted for about 4 days, I passed out the other night as the stabbing pain was so intense. I started with chills and sweats and everything turned blurry, I leaned on the wall and felt my body falling. When conscious my legs felt like jelly, it took a few minutes to regain my strength. Washed my face and I could not recognise that ghost staring at me in the mirror, I looked like a deceased. Painkillers do nothing, have to take a second dose to get some relief. My periods seem to get heavier and last longer, so is the pain.
Can't do anything because any physical effort or stress will trigger the contractions and therefore the pain. I'm tired of not being able to cycle, go to the gym, climbing or even go to work, just because the pain is unpredictable. Can't not go out grocery shopping on my own, in case the ruthless pain hits me once more. I'm just too tired of having to bring my life to a halt because of this. And the thing is nobody can see my pain, I might be in agony in the morning and perfectly fine in the afternoon.
Sorry for the rant, but my frustration is going up every month, coping with the pain is getting more difficult (and I'm not one reaching out for painkillers easily) having to take higher doses which play havoc in my gut, and not being able to do the simple things I enjoy.
Written by
Edda13
To view profiles and participate in discussions please or .
hello just to say I feel your pain and understand what it’s like. It a living hell having to cope with this day in day out. As people can’t see it they think nothing is wrong! How wrong they are. It’s also stopped me from functioning as a “normal” well human being and taken away so much from my life xx
You aren't alone. Please ask for a referral to gynae/women's health to get seen properly. I hear you. I wore black trousers for 2 years as I was terrified of unpredictable periods (esp at work). Its draining tiring and I had to go on iron as I was so low from all of this. Fast forward 5 years and iron ok, and am regularly seen at the women's services to keep things in check. xxx
I completely understand how you feel and when the pain hits I just feel so alone and sorry for myself. I cry a lot during this time. I've had to go back on the pill and I take it back to back for the whole pack so the periods are less frequent which has helped with quality of life. If you haven't already, please seek specialist medical advice to see what options are available.
I've been there too. Now I try not to cry or lose control, because pain will go up. I was on the pill for some time but I ended up in hospital as Dr thought I was having a stroke.
So sorry to read this. I've been there. I only got somewhere when I found an endo expert consultant and paid privately for the first session then switch to the NHS. I was the same with painkillers, I couldn't function without them and after years without a diagnosis they stopped helping. Don't give up trying to get the support you need xx
It's funny because until recently I've managed without painkillers, only using cbd oil, breathing techniques and tens mach.Now I'm on ibuprofen and mefenamic acid, but they do nothing. What else could I get from my GP? At the moment I'm on the waiting list for endo clinic.
are you taking ibuprofen regularly for 5 days before your period hits (and then during it)? It helps to dampen the building inflammation. There are loads of painkillers your gp could prescribe- codeine, tramadol, etc or trying nerve drugs such as amitripyline, etc. If your gp isn’t helpful request a referral to pain management. Have you had surgery already? Have a look at pain management on Endo uk website and search ‘painkillers’ on here. Are you on the pill or mini pill? Def request a referral to pain management and an Endo specialist. Endo is hell - everything you’ve described in your post I’ve felt millions of times. My current treatment is cerazette mini pill, hot water bottle, cbd, paracetamol, then when at its worst 30mg codeine, tramadol, cyclizine for nausea. Nsaids damaged my stomach so much I had to discontinue. 3rd surgery made me so much worse. Def get your iron levels checked but to be honest I’ve regularly felt what you’ve described during times when not anaemic but if you’re having heavy periods def get iron checked. Xx
My stomach can't take ibuprofen long term, I only take it when I can't stand the pain, which is probably too late and it only makes pain a bit bearable. I honestly don't see the point inmasking a condition to only damage another body organ. Can I ask what cbd oil are you taking? Mine is only effective with mild pain.
I take Simply CBD green oil. Need to take it 3 times a day every day, not just when it hits. Plus Love CBD balm. It’s no miracle but I’d say it’s about equivalent to ibuprofen which I can no longer take. As you say helps mild to moderate pain but not the extreme. I think anything that reduces inflammation throughout the month is worth trying.
Have you had an official diagnosis of Endo and told what stage it is? Which organs it’s affecting? Just so you know you’re not dealing with adenomyosis or anything else? I have both.
Basically I was diagnosed by laparoscopy at 17 after being completely bedridden in agony for 9 months. Completely reliant on my mum to get me to the bathroom. Put on a drug that gave me high blood pressure for the rest of my life then the combined pill which did Jack all for me. From the age of 23-39 I controlled it with anti-inflammatory diet, magnesium supplements, starflower oil. I would still have to take ibuprofen 5 days before and during and codeine 30mg at its worst plus anti sickness drugs. I was more comfortable with ‘nuking’ it when it hit extreme levels rather than be on something every day. 3 failed surgeries. But at least it was only around 3 days a month I couldn’t do anything. At age 39 it suddenly became a lot worse again and would last a week. I tried everything naturally but no improvement. Lost my career and social life. Eventually resorted to cerazette mini pill which reduced the horrific pain and blacking out but could have heavy periods for up to 6 weeks. Now on double dose of cerazette and it’s the best I’ve been in the past 8 years (I’m now 37). I hate being on the drug and all it’s side effects but at the same time I’m not willing to experience that terror every month drenched in sweat on the bathroom floor unable to move from pain. Repeated agonising trips to a&e for morphine and anti sickness jab. We all have to make our own decisions. There is no cure for Endo. If you have a diagnosis def throw everything natural at it - anti inflammatory diet, cbd, supplements, exercise (prior to it hitting to see if that helps) but only you can decide if it’s got to the level where it’s too unbearable and ‘masking it’ is the only option. It’s a shit situation to be in. That said, many people do have excision surgery that helps for many years. I just had a bad experience last time which left me in a worst position than I was before. Due to other health problems I have, the pain clinic only recommended lidocaine infusions monthly which I’m not willing to risk as it’s unpredictable how long it takes to kick in and how long it lasts so I could be pumped full of anaesthetic on days I can cope with paracetamol or just cbd or not need anything at all and no guarantee it would be effective on the days it’s really needed.
I'm really sorry to hear the impact caused by endo in your life. It's a hell of a disease as it has no cure, difficult to diagnose and invisible.I've been enduring debilitating pain since I was 15, but Gps and gynecologists dismissed my pain saying that it would go away when I had my first child (blatant lye!)
At the moment I'm 44 and I've not been formally diagnosed, gynae said it was either endo or IBS. No follow up appointment or anything: as I declined taking the minipill there was nothing they could do for me. Last time I was on it I ended up in hospital with suspected brain blood clot. So, it's a big no for me.
After years of coping with the symptoms the best I could, it seems to be getting much worse. My gp referred me to my local endo clinic, but it will take some time to get my first appointment.
Sometimes I feel like I can't be bothered, it's a dead end... Just take painkillers when you can't bear the pain any longer, bring your life to a halt for 4 days and forget about doctors. Why do we women have to convince them our pain is real, that something isn't right with our bodies? It's yet another burden added to the condition.
oh yeah, at 17 and bedridden for 9 months I was also advised by drs to have a baby. If it wasn’t such a disgusting comment it would be laughable.
I do wonder if age/approaching menopause made mine worse. Don’t get me wrong, my whole life still revolved around Endo before as in planning things outside of those times, missing weddings, birthdays, work, etc, and no one bloody understands, but for at least 3 weeks a month I was a normal, functioning human.
I guess you’ve tried an anti inflammatory diet as you’ve been battling so long? It really did help me for a long time. It’s really horrible when your go-to’s no longer work - on a psychological level too as you have SOME control over it when you implement natural ways and it actually helps. A couple of my friends have got through labour with just gas and air by implementing my Endo breathing exercises, distraction techniques, etc, etc. Just shows what level of pain a lot of us Endo sufferers deal with monthly.
Yep, mini pill is obviously a def no for you and combined pill even worse. It’s really tricky when you have other stuff (like my high blood pressure rules out a lot of Endo treatment).
Totally agree with you re drs, treatment and the fact it’s an invisible illness. We have to fight so bloody hard to be heard and to receive appropriate help. I’m appalled that even though there’s more awareness now in general, 16/17 year old girls are still in the same situation I was all that time ago.
Good you’ve got a referral to an Endo clinic. If I was you I’d do your research on it now and who the Endo specialist is and research a back up one for a second opinion if necessary. Which I’m sure you don’t want to hear. I had an internal ultrasound at one a few years ago and was told I had adenomyosis but no Endo - it doesn’t just friggin disappear and at my last surgery it was so bad the consultant was unable to remove it all. Then I went to another Endo clinic and I knew more than the ‘specialist’. Which is a position you don’t want or expect to be in. The Endo uk Facebook page for your local area group is helpful - members are allowed to mention hospitals but not specialists but you can always private message. But let’s hope you’ve got a good one first go! It does happen!
All you said resonates with me...I've tried everything and no, having a baby doesn't help in any way, except if you're breastfeeding. I was blessed with over a year without periods. Given that I've always been very mindful of drugs side effects, I've focused on changing my life style. Swapped to a vegan diet and it seemed to work for sometime, but i was also missing different types of proteins and minerals, my hair started falling and felt tired. Also avoid processed meals/food in favour of cooked from scratch veg and pulses. Cutting down on gluten didn't have any effect. But my endo flares up with caffeine, refined sugars and alcohol. At the moment I'm taking b12, magnesium & zinc and Flaxseed oil daily and follow an ayurvedic anti-inflammatoire diet.
As you mentioned my current flare up could be a consequence of the perimenopause, which seems to be rather common.
I'm going to start taking the cbd oil daily as you suggested, hopefully it will help before my period.
Hi i hope you dont mind me replying its a nightmare this endo sometimes seeing a physio that specialoss in pelvic floor might help. mite be good to chexk your iron levels i am no dr but get some bloods done good luck stay strong
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Mental elf (or health) struggles at Christmas 
Mental health
Mental health and endo 
does the bloating affect anyone mentally the most?
