Endometriosis is Disabling
I was reluctant to use the terms ‘disabled’ and ‘disabling’ when it comes to my current state of health. But as I lay awake in bed at 12.24 am, on Monday 12 February in excruciating pain unable to sleep, unable to find a comfortable position, in a state of panic, anger, and despair, and unable to think about anything other than my entire abdomen, sides, groin and lower back tighten in on itself because the pain relief I had no longer began to work, it cemented to me that my periods are disabling.
The last time I wrote about endometriosis at length was post-surgery and I received the official diagnosis. Since then I have been through counseling for panic disorder while still trying to come to terms with a long-term health condition, and ‘managing’ the physical side effects of the Mirena coil.
As I thought I was finally going to be experiencing a somewhat ‘normal’ menstrual cycle, my body decides to prove me wrong and now I feel like I am back at square one of seeking answers again. I originally began writing this blog in February 2024, during the heat of the worst flare since my surgery in July 2023. Now it is April 2024, nine months after my first excision surgery and now I am in the ‘artificial menopause.’
So, how did we get here today?
Mirena coil - worse off without it, not entirely better off with it
After the post-surgery adrenaline of endometriosis excision, I began to feel the after-effects of the Mirena coil. This is the hormonal implant that releases progestogen to help with painful and heavy periods and is recommended for people with endometriosis due to it not containing estrogen.
The first time I tried to have it inserted pre-surgery it was an absolute shit-show. The NHS website describes it as being ‘uncomfortable’ to be put in, and I say what a load of crap. I won’t deny that for some people it is, but you can read the amount of stories for those where it is excruciating. For me, at the height of my symptoms, it was extremely painful to have vaginal examinations, and I couldn’t get past the stage of the nurse checking my cervix. I was in a full-blown panic attack and the rest of the day my body was in worse pain than before the attempt, and that was with me taking codeine beforehand.
When I then met with a gynaecologist to discuss surgery and explained my attempt at this, he said to me he does not perform insertions without local aneasthethics because in his words ‘I would want aneasthetic if I was having it.’ This is not something commonly offered and you have to request it, however, in my opinion and experience after that traumatising first attempt there is no way I would be able to mentally try it again if I was awake at all.
I, then, ended up having the coil put in during surgery and any pain after was masked by post-surgery pain. However, a few months later I still struggled with daily cramping, daily bleeding, tiredness, and acne. After a call with one of my GPs, where the suggestions were to take other hormonal medication on top of the coil, which I had re-explain contributes to depression in me.
In the end, the call closed with her saying I am better off with it in than out and I should stick it out until the six-month mark, where it is supposed to settle and to see the private consultant I saw for surgery for other help. This call left me in tears because I knew there were no other options but to be suggested private again, whilst still having the surgery bill to pay off it destroyed me mentally hearing this because I have nowhere to go for help. The NHS waitlist for gynaecology is so long, GPs can only do so much and private care is unaffordable now, and I will never qualify for health insurance to make that a possibility, it feels like there is no point in seeking medical help again.
Endometriosis is shit, BUT it doesn’t have to rule my mind
At this time, I was seeking out mental health support for panic attacks associated with endometriosis pain. I was skeptical about it because I’ve had CBT before and it has been useless mostly because I could not connect with the counselor and they essentially told me I was doing everything right, which wasn’t helpful for a severely anxious and depressed 2020 me.
This time was different, through some stroke of fate the free counseling recommended to me by my best friend, was with a counselor who herself has endometriosis and has undergone the same surgery as me. I had 6-7 sessions to help both with the panic attacks I was having at any form of sharp cramping, the sight of blood, and in medical settings as a result of the months of untreated endometriosis and experiences with hospitals and medical professionals.
It felt so easy to talk to this counselor because she has experienced and understands the mental and physical tolls of endometriosis and getting a diagnosis. I could laugh about things and talk about what was troubling me without crying most of the time and with full understanding that this person knows what I have been through. The one thing that worked for me is that I was allowed to and it was acknowledged that my situation is shit. I have a chronic illness that has no cure, it can come back and it has wreaked havoc on my body. It is deeply misunderstood by most doctors and there are huge barriers to treatment, and that all treatments that exist don’t fix the problem and we still don’t quite know why endometriosis happens.
Despite this knowledge, I don’t need to panic every time I experience pain, because at that time I was a lot better and the pain wasn’t the same. I also don’t need to do everything and I don’t need to overexert myself. I can say no plans even though I feel mostly good if I already have other things on in the week and it is ok to cancel if I am in too much pain. Most importantly, I don’t need to feel guilty about putting my body first. I learned different ways to cope with the pain and to redirect myself into activities that make me happy.
For example, if I feel terrible and can’t go to the pub quiz, which I used to enjoy, instead of lying in pain and feeling shit I can redirect my evening by taking a bath full of magnesium salts and read a book. Falling in love with reading again has allowed me to enjoy being at home when I am physically unable to go out.
I was encouraged, but also had someone to hold me accountable for reaching my goals of working in the office once a week and going to the gym once a week. This was something I was able to achieve in January, and I felt good!
I also learned a lot more about tracking my cycle and moods better. This helped reframe my mindset from everything is shit all of the time, when in reality a lot of it was during the luteal phase of my menstrual cycle when hormones are low and my mood is generally lower as the body gears up to the next period.
The sessions left me experiencing a less panic attacks and I was able to self-soothe a lot better. I wasn’t made to see everything positive and rosy because it is not, but I don’t have to be panicked about everything all of the time. I am never going to get my healthy body back and operating at 70% capacity might be all I can achieve and that’s fine. It’s ok to adjust plans and schedules based on how my body was feeling and I could plan activities around my cycle more as I began to understand and track it better.
Accepting that Endometriosis is a disability
As the new year began and the six-month mark hit, I experienced a relatively ‘normal’ period, for me. It was a week long, extremely painful but the bleeding was less and it was just during that one week, not the entire month. Mentally, that was great I can cope with a worse week of pain than a whole month of it. Then February rolled around and my period was ten days long and the pain wasn’t letting up at all. It took a turn for the worse on the night of Sunday 11 February to the early hours of Monday 12, where no pain relief was working and I was up every few hours.
I felt my entire abdomen, pelvis, groin, and uterus tighten and clench in on itself. It’s like someone had grabbed my ovaries and was squeezing them. The suicidal thoughts crept back in and I wished to no longer exist because if this is what my existence is supposed to be I don’t want it. I thought if this is the endo coming back, what a great 7 months I had operating at 50-60%.
The signs are there, more frequent urination, paracetamol having the same effect as tic tac for pain relief. Working from bed for a few hours and then the couch. That week I was unable to shower in the mornings as it was exhausting. I would leave it until the evening when I would douse my body in a searing hot bath full of magnesium salts hoping that it would relieve something. Even then, that was not always a possibility and I would try to shower as quickly as possible just to have clean hair.
I felt terrified of seeking medical help because there is no cure and the NHS can’t do much to help me, knowing there are professionals specialised in endo that can help me but I can’t afford to see them regularly with the surgical debt I am still paying off and then worrying by the time I have paid it off will I need another surgery. It’s so much to live with, too much to live with.
I am told I am strong but I don’t fucking feel like it. My body is weak, I feel weak, fatigued, and pained. My periods are disabling, but a lot of the time the world can’t see that crippling pain that happens every day, I am not limited to my period, it’s throughout my entire cycle, ovulation may as well be another fucking period with the amount of pain it causes.
These were the thoughts racing in my head as I tried to get some rest before visiting my GP in the morning. Exhausted from very little sleep and being in pain all night, I was stressed about having to explain myself and hoping that the pain would be taken seriously and more would be done than just suggesting to see the private specialist I initially sought out for surgery to save my mental health. I anxiously sat in the waiting room going through a script of what to say to make sure I said everything correctly, said everything to get me some help.
The extent of the trauma I have from past experiences with medical professionals showed up in the room that day, but this GP was truly a model for what more doctors need to be like. She didn’t have me overexplain myself, she listened to my concerns and requests for further scans and as normal she needed to carry out a physical examination. As I lay down I was already beginning to panic because I knew it was going to be painful, she reassured me she would be gentle and after I began to shake with pain after the first press she stopped and said she didn’t need to further examine because she could see my pain.
I couldn’t stop crying and began to hyperventilate, at this moment she held my hand and calmed me down, she said she believed me and that she had seen many women with pains like mine and would get me the medication and referrals I needed no further questions/explanations needed. She carried out extra tests to rule out other conditions and made sure I was calm enough to leave. It made such a huge difference to not have to plead my case and just have the simplicity of I am in significant pain, I have had surgery, I had endometriosis, and the concerns I had about what my body was telling me.
It’s only after talking with friends about what happened, friends that have disabling periods and mental health conditions, who acknowledged that my periods were disabling before I did that my periods and endometriosis is a disability. It was hard for me to see it this way because endometriosis is an invisible illness, my pain is not a broken leg or a knife wound, it is cramping, it is nausea, it is migraines, flu like PMS symptoms, it is being unable to stand up to brush my teeth, it is wincing in pain at every step on the staircase and feeling breathless and on the verge of tears at the top because how am I, a 26 year old struggling to walk up one small flight of stairs.
It is feeling exhausted after a shower, it is being unable to cook and do laundry in the same day, it is having to turn down plans because the travel and sleep arrangements are not suitable for me, it is making sure I have three grades of painkillers in my bag at all times, it is taking days off every period, it is preparing a script before seeing a doctor to make sure I have enough evidence for them to believe my pain, it is the 1-10 pain rating scale not working for me, it is holding back tears in social settings and saying it’s not that bad when it is, and when it is bad it is actually devastating. It’s using a walking stick at 26 and getting weird looks for using it, and both feeling self-concious and critical like I don’t deserve to use it because I am young and my disability is invisible.
It is feeling like a shitty friend because I can’t check in or I am terrible at replying because just getting through the day is exhausting, it is feeling lonely because I can’t go to social events so I don’t see my friends as much, it is feeling like a bad sister because I forget to check in but at the end of the work day I am just so tired. It’s feeling like a terrible partner because there are so many thoughts running around my head that I forget to check in and see if he is okay. It is saying I am tired, when I am really exhausted, it is not having the words for how painful it is, it is not knowing how to accurately describe the senstions I am feeling, it is my mind wishing I was dead even though I don’t want that, but I want rest. It is being told I am so strong, when my body is proving me wrong otherwise.
In the last week, I have come across the term ‘dynamic disability,’ which is a disability with symptoms that fluctuate, flare, or change. According to Disability Together, they describe dynamic disabilities as some may have mild differences, while others drastically change from day-to-day. They can be affected by a multitude of factors including environment, disease progressions, other disabilities and more. You can see some of the symptoms above, all of which I have experienced and do experience daily due to endometriosis and can vary in their debilitating effects. During this same timeframe, I also saw an NHS doctor post an awful comment on endometriosis advocate, Chloe Durrington’s page, saying that “why is everything a disability these days??! Why is everyone obsessed with being a victim.”
My immediate feeling was rage, rage that an NHS DOCTOR, a person working in hospitals on the front line, has the audacity to say this. These are the people Chloe, I and many other endo warriors end up having to interact with to seek help and they hold disgusting beliefs like the above. I thought what do you gain from saying that to someone who is clearly struggling with pain, it is truly evil. And this is a junior doctor, who has 37K followers, is broadcasting this opinion. She later deleted the comments after being rightfully called out by several people in the endo community, but many of us saw them and many of us are deeply hurt. I am truly heartbroken for Chloe to have received this abuse, and genuinely worried for anyone who visits the hospital she works at and comes in with pain related to endometriosis. It is infuriating because this kind of behaviour by doctors is why so many people with endometriosis severaly delay going to A&E or don’t go at all. I have only been twice in the last year and half, even though I have had weeks and months of pain relief not working and missed countless weeks of work stuck in bed unable to move.
Good doctors are gems, Bad doctors are dangerous
The hospital I have been to traumatised me severely that I have medical PTSD. It is so bad that every time since the first visit in March 2023, I have been to that hospital for emergency care or routine appointments I have panic attacks. The only doctors I feel comfortable around are my GPs (two WOC and one male), who don’t push unnecessary physical examinations, take the time to work and see what medications they can offer to help me, get me the referrals I need and explain everything clearly and concisely. Then there is the endometriosis specialist, who I saw privately and performed my surgery, who listened to me like a human being with real concerns. He never dismissed me and when my parents supported me to see him again in March this year following a horrendous trip to A&E in February where I was told to do yoga and change my diet, despite being on a cocktail of morphine, codeine and paracetamol the last 24 hours in that very hospital, he empathised with me and presented me with options I could take and took into account the financial aspects because that is a big concern for me because I don’t want to burden my parents, but I severely need the help. In each appointment, that I have seen him I don’t feel anxious, I feel traumatised recounting my experiences but I feel safe talking to him about them.
I have an appointment soon with the endometriosis clinic at my local NHS hospital and I can tell you every single night since I received the appointment date, which must be at least three-four weeks ago now, I have had anxiety thoughts about how best I can argue my case and present my symptoms so I can get the scans and help I need. I am anxious because it is a new doctor and I don’t know if he will believe me and I know I won’t be able to rest until after the appointment, depending on how well it goes.
Uncertain futures
Endometriosis a debilitating and disabling illness, which I have experienced no rest since the first presentation of symptoms in November 2022. I am back in the cycle of looking for answers, it could be a flare up, it could be a cyst or it could be the endometriosis growth back again or now possibly IBD or bowel endometriosis. It’s another period of unknown and uncertainty and it is terrifying and tiring. I don’t know if I will ever enter a long rest period, a time where I don’t think about endometriosis, a singular pain free day.
Currently, I am trialling prostap injections after talking through my options with the specialist I trust, and so far it has been good I have more mobility, but I am acutely aware this is patch until I can hopefully get an MRI scan to rule out endo elsewhere and see a gastro specialist as I have had a test come back positive for IBD and I am experiencing some hellish symptoms from that. I am feeling strange in my body going through the artificial menopause at 26, what it means to no longer have a period and I hope to write about it soon.
For now, I hope by sharing my fears and experiences that when people with periods experience abnormal pain they seek help and support, and don’t accept that being in so much pain that you cannot leave the house is normal. I hope they can feel empowered to advocate for themselves. I hope that medical professionals get a better understanding for we go through and understand the damage of invalidating pain can have, and just believe that you can appear fine but the pain is severe, it’s just that we are so used to being in chronic pain we are really good at masking. I hope that the louder we are the more research is funded and there is a treatment that isn’t just hormonal therapies or opioids, so there are other viable options whilst we wait for surgery. I hope for a better future of treatment because it is one of the few things that is keeping me alive.
