I don’t want to die, but I don’t want to live
Trigger warnings: suicidal ideation, talks of self harm, medical gaslighting
I didn’t think I would be in this place again, but here I am past breaking point. Endometriosis has me feeling suicidal again, as I try to navigate getting help for aggressive symptoms.
It’s a topic not talked about much from a personal perspective, I read the stats and I see more stories of women taking their lives because of it, so I am here talking about my experience in hope someone out there who is feeling the same way knows they are not alone and we can keep going together.
There is nothing else we can do for you miss, it is majority in your head xo
For those who follow my instagram account BrownGirlEndo (get following, if you don’t xo), you know it has not been a great few months for me and for those who don't, let's dive right in!
I was on route to getting to a good place with the management of endometriosis, finally coming off the Mirena coil and working with the incredible Alycia-Thompson Ward to build my strength back up and she got me lifting weights! I felt really good physically, the strongest I’d been in years and with my period coming back and although painful, manageable with the rest of my cycle.
I had a few skipped periods due to the stress of unrelenting migraines, but I started treatment and my January period had me out for a meal on the first day of a heavy bleed with just a tens machine. I felt really powerful again, and seeing improvements with the migraine treatment and began to return to work on a part-time basis.
Come luteal phase ahead of my February period, I experienced severe back pain, which had previously been moderate, and now brought back spasms. The pain was so much I could not concentrate on eating my dinner that evening. Thinking a walk would help stretch things out, me and my partner went to the supermarket. I couldn’t make it halfway around before I couldn’t hold myself up and my legs began to buckle under the extreme shocks of pain being sent up my spine and down to my feet. I lent over a self-service till while I waited for him to come with the bread and he had to help me walk to the car.
We got home and I was in streams of tears trying to get up the stairs as every step sent further shockwaves up my spine. I rested my hips on the sink to brush my teeth and ended up having a lot of the strongest strain of medical cannabis I had to knock me out. This pain did not relent, and it eventually died down after my period.
In March, the same thing happened again and as my April period ramped up it happened again. But this time, the period never arrived and I was bedbound the two days before this period was supposed to happen and was intermittently out of work as bowel movements left me bedbound from the strain on my back. My GP tried to get me help and support, working to see what she could do to get pain relief that could work for me.
April 31 saw the first of three trips within a month to A&E. I had spent the night prior to this crying myself to sleep, lidocaine patched up to the max hoping the pain would relent. The 31st rolled round and the same thing happened again. I took codeine which I had tried so hard not to take and it didn’t work, and with the unsaid support of my partner we went to the hospital.
After nearly losing consciousness from having my blood drawn, I received anti sickness and morphine for the pain. That was the first time in weeks, I had felt real pain relief. I am grateful for the A&E doctor who gave me a short course of it as I waited for an MRI scan of my back. A few days later, I really needed a wee and went to go, and I couldn’t. This has never happened to me, so to the hospital again!
Again the doctors and nurses were great, and after having my bladder pressed on soooo hard with a bladder can (iykyk) I was able to go and then sent home to do a urine sample to check things were all good. A lumbar spine MRI later and a clear from neuro, it was back to exploring what I thought was actually happening to me.
The bitch is back?!
I had a suspicion but because of a clear pelvic MRI in March, I had to pursue other options. But it became clear from my talks with A&E doctors that I could have endometriosis growing on my nerves / growth pressing on my nerves, which is causing this pain, and now it’s back to gynae. An appointment which is not until June 25, and it could not be brought forward (it actually got cancelled and I was told I couldn’t get it back, and I did!).
I ended up in hospital again at the end of May because the rib pain I was experiencing alongside the increased back and leg pain affecting predominantly the left side of my body had now spread to my chest. I didn’t want to go to hospital, but it was the first time in a long time I was genuinely worried I was one bad thing away collapsing at home and hurting myself.
So again I went to be told I am on everything possible, a clear chest x ray later and the OOO GP looked at me like ‘ah that’s shit.’ LIKE YES I KNOW, BE CREATIVE AND HELP ME FIND A SOLUTION OR SOMEONE WHO CAN HELP ME.
So we waited hours, with no pain relief to be told I need to see pain management, no one can make the appointment happen faster and that I should see someone privately as that’s the only way. That I shouldn’t be on the amount of medications I am just to function, but again offering no alternatives. I went into shut down and I was sick and tired of reliving the traumatic pain I am in, to the point I burnt myself because heat that high was the only thing to stop the rib pain.
Yet, I have the best partner in the world and he paid for me to see a pain consultant privately. This is where it gets juicy!
He had a review on his website that he had worked with patients with migraines severe enough to need Botox on the NHS, which is the level I fall into. He seemed logical as he may have had experience with people on the drug I am on for it, and may have seen similar potential side effects in other patients and I would think given how many women and AFAB are affected by endometriosis in the UK he would have come across them too.
I went in openly hoping that he could recommend how I can optimise my current medications, if he had experienced any of the above and what interventions I can talk to my pain management team about at the end of the month.
I had this period of increased pain dismissed as an acute problem with two possible triggers: the migraine drug and endometriosis regrowth due to the cyclical nature of my pain and it getting worse than I had ever had affecting areas, which had never previously been affected by it.
It was presumed the back pain I had was chronic, which I only had during my periods, but had been manageable since the summer of 2024. I have never been this physically disabled by the pain in my back to the point I struggle to move around my house and quite frankly every time I take a shit my back gives out.
He said it is unlikely and in his opinion the migraine drug is causing it (see this anecdotal evidence - this is very similar to me). He also noted that because all my scans are clear there is little biomedical evidence and my pain is disproportionate to that and I could try stopping this migraine drug but doubts anything will happen.
So what do I do next? Accept and move on with my life. Try self-management, like that’s not what I have been doing. That pain psychology will help me accept where I am and I can work to live life like this. Life where I cannot walk unaided for more than 15 minutes without feeling intense pain and spending several nights a week awake in excruciating pain, which continually gets worse with my periods.
I challenged things, noting that even though my pelvic MRI is clear that it can still be endometriosis and I would need pain team help to manage pain. He said he is not a gynaecologist but there are no interventions that can help me and pain psychology is the only option and he will refer me. Another waiting list to be sat on.
Look I am not hesitant to this and accepted the willingness to do this earlier in the session because I know this will be beneficial to me. But what I couldn’t accept is his inability to see this deterioration with two key triggers. I can explore them but ultimately nothing is going to help me now.
I also brought my walking stick with me because I had been experiencing a higher intensity of pain as my body was adjusting to a new hormonal pill which I have been trying for symptom relief. I was told mobility aids are not good for chronic pain and could become a crutch. I explained I needed to use it now because my functional capacity is down and previously I was using it for period days and during the period of time where I had migraines so severe with vertigo I couldn’t keep myself stable.
I tried to speak up for myself but ultimately I just didn’t have it in me to fight. I felt he didn’t properly listen to the types of new pain I was experiencing with it all being written off as something that can be fixed through pain psychology alone and there are no other issues to be ruled out first.
No one is immune to medical gaslighting and nothing can prepare you for it
I felt my world crumble and on the drive home I just couldn’t speak without crying. I had a mental break and began to doubt myself. Was this pain actually smaller than I had been experiencing? Maybe there is nothing and I am just making this worse for myself? Am I really feeling this pain? Is any of it real? Is it all in my head?
I went without my mobility aid the next day because if there is nothing wrong with me I don’t need it and any pain I experience is my brain overreacting. I ended up in more severe pain when I returned home than if I had just taken it, but again I think is this even real? Is this even real as my body struggles with simple yoga? As I am breathless getting off the toilet after a bowel movement, this isn’t real is it?
This has really hit me after I had gotten to such a better place with my body and knowing what was right for me. I now tell myself, I knew the Mirena coil wasn’t right for me despite being told I’d be worse off without it by a GP. The evidence I have for this, I was able to get to doing 9K steps, recover quicker from flare ups and lift weights during my LUTEAL PHASE BABY.
But it doesn’t make the appointment any less shitty. I told my partner I don’t have it in me to go to these appointments on June 25 and being told there is nothing to be done. It will be the final crack for me. He said I don’t need to speak, he can speak and I cried* yet again.
*where are these coming from I swear there is no water left in me at this point lol
I don’t want to die, but I don’t want to live in this body anymore
Since April, I had started to struggle with suicidal thoughts again. I first had them in the lead up to my endometriosis diagnosis surgery in 2023. Often I would have ‘I wish I was dead’ repeatedly in my head, starting off with just extreme flares to the thought being constant as severe pain was happening all of the time.
I didn’t realise this until June 2023, after I journaled for the first time in months and it all spewed out. I told my partner and that is when we tried to figure out a way with my parents to pay for surgery.
Fast forward to now, it is no surprise, but I had been pretty suicidal. But this time I have been finding it harder to fight off the thoughts because I was not having very many moments of true relaxation and peace. I am crying all of the time, I feel hollow and in nights of excruciating pain I wish for the sweet release of death.
I wake up in the morning emotionless, feeling like I am just stuck in a world moving around me and when I try to even think of anything outside of what’s happening to me, the current state of the world and I just want the ground to swallow me whole.
After the pain management appointment, when I arrived home I can only describe what happened as my soul being broken into a million pieces, an existential crisis. I tried to do my nighttime pain relief yoga, which can help calm my body down and this time it failed to work.
I sat on the mat shaking violently, tears streaming down my face, my fingers scratching aggressively up and down my leg as the following thoughts circled my head:
It can’t be that bad, there is nothing wrong with me, everything is clear so this is pain I just need to get on with it
I am over exaggerating , I am clearly making everything up
None of these pains are real, I just need to push past it
None of this is real, I am not real
I wish I was dead because I can’t push past it, I have tried
I can’t keep doing this, I cannot have another doctor tell me they cannot help me. I cannot rehash all the trauma, all the pain. I cannot tell them I have burns over my body because nothing is helping and then be be told there is nothing to be done, because I am already broken, one more appointment like that will kill me
I am such a burden, the world is better off without me
I don’t want to take anymore pills or I should just take them all and finally sleep peacefully
The dermaplaning blade is in the tray on my bedside trolley, I could grab that, that would be real [this one is particularly scary because I have never had thoughts that real of self harm and actions for doing it]
Fuck I am scared, what is happening to me
The one thing I am thankful for is therapy, it allowed me to communicate some of these feelings to my partner, who very seriously told me I cannot think like that. I broke into pieces and told him a garbled version of this, and that I cannot do the next appointments. What else can I say to get someone to help me?
He said he would tell them, and the tears kept flowing and they have done as I write this. This disease has broken not only me, but I have seen what it has done to my partner and it angers me. He is not someone who cries, but the last few months I have seen him have the same look in his eyes as I do. I see the light fading from us, I mean how often can he keep seeing me in tears and not be able to do anything. How long can I keep seeing the look in his eyes when I am in that state.
We can’t keep going on like this, we deserve to live a normal life. For me to not have to mask pain for longer because I don’t want to be crying again and for him to keep witnessing it daily. I don’t want dread every ‘how is your day going’ text because it is going to be a fucking miserable answer. I don’t want him to have to worry about any outing we do, to feel guilty for being able to socialise when I can’t, I don’t want him to worry about me not replying to a text as me in a badly way and to not have to worry about what state he will find me when he gets home from work.
Another layer to this, is that I am watching my mum going through the same barriers with the healthcare system, albeit non endo or gynaecological. I hate that the system is failing south Asian women, I hate seeing the way my mum is, seeing her light fade. It then reminds me that my partner, close friends and family are seeing me in the same way.
Suicidal people hold a lot of guilt because of the effects dying would have on those around them. For me, I have the best support system around me so I was able to bat these initial thoughts away easily, but by the third hospital trip being told there was nothing to be done for me apart from pain management and well pain management going the way it had done, I couldn’t fight them anymore.
The cycle of self-guilt hit me that I couldn’t die because my loved ones had paid so much to help me get well. And then finally, I know deep down I don’t want to die, and out of spite I keep going because I am not going to let shitty healthcare experiences be the reason I die, let alone a man telling me that my pain is largely not real.
As I round off this blog, the migraine drug appears to have no effect on my trigger pain areas and as my body in part is responding to Slynd, I have to try and get gynaecology to take my symptoms seriously. The past few days I have tried to take a ‘fuck it i am going to try and have fun,’ two social occasions over the weekend despite hardly sleeping and my pain levels being harder than ever, and losing my ability to walk on my own during one of them. I am sick of this disease robbing me of my life.
A special thank you to my partner, my loved ones, my best nurse Tiffany, my endo buddies and the endo specialist that always listens with care and got me answers for years of unanswered painful periods, and said even if endometriosis is not visible on the scan doesn’t mean it is not there. Without you, it would be harder to fight my brain and keep going.
I highly recommend reading Endometriosis: Understanding your symptoms, Get the right treatment and Reclaim your life by Jen Moore for those trying to get help for endometriosis, medical professionals and those who have a loved one with the condition.
