MY ENDOMETRIOSIS STORY PART 4 – REALITY

It’s taken me nearly 2 years to write again, and even now I’m so uncertain about how I want to approach this piece.

My last post was disheartening to read. The inevitability of the endometriosis coming back with a vengeance was hard to accept, and my future looked so uncertain. At this point, I can honestly say that my future has never been more uncertain. Unfortunately, with the severity of my endometriosis coming back, so have the hospital admissions. In the last two months alone, I was hospitalised three times, two of which required admission onto a gynaecology ward in two different hospitals. I never thought my condition could get as bad as it was before I was diagnosed in 2020, but as luck would have it, I’m in the worst position I have ever been in with this disease, and this is truly the worst pain I’ve ever felt in my life. 3 months of consistent pain, 10/10 in its severity, has taken its toll.

I’m so incredibly lucky to be under the care of an incredible endometriosis clinic at a hospital in London, and I want to start by saying that before anything else. Because it was an NHS referral, it took 5 months to get an appointment but when the initial appointment came through, the consultant took an extensive history of my condition, and did an immediate TVS (trans-vaginal ultrasound). I’ve had so many scans over the last 12 years that I wasn’t phased by another one, and was actually glad they were so quick with doing one in the appointment. In the TVS, they found an endometrioma on my right ovary (a cyst filled with menstrual blood that’s a common sign of endometriosis, also referred to as a “chocolate cyst”), along with some deep penetrating endometriosis, as well as adhesions around my bowel caused by the endometriosis. They also found that my right ovary was tethered to both my pelvic wall, and the side of my uterus, essentially meaning that my entire right side of my womb is stuck together. There was also a hemorrhagic (functioning) cyst found on my left ovary, but out of everything that came up on my scan, ironically that was the least concerning. I knew the endometriosis had come back so this wasn’t exactly surprising to me. It didn’t make it any less painful to hear, however. The only option after 2 laparoscopies not tried in managing my endometriosis was progesterone, the word I’d been dreading. Progesterone treatment had been recommended to me before, but I’m so hyper-sensitive to hormone therapy, and also have the Mirena coil, so the idea of more hormone therapy was terrifying. I’d previously looked into the side effects of progesterone treatment and it wasn’t pleasant. I’ve tried hormone therapy before that didn’t involve progesterone: before my first endometriosis surgery in 2020, I was tried on the Zoladex injection but had to give up after a month because of my mental health deteriorating to an all time low (https://anisahhamid.com/2021/02/05/my-zoladex-experience/). However, I was getting desperate at this point and was willing to try anything since I knew my situation was getting worse.

Unfortunately, the specific progesterone treatment I was put on didn’t work at all. In fact, I ended up in hospital three times whilst on the treatment, so it was clear that it wasn’t working for me. During one of the hospitalisations, I was incredibly lucky that the lead consultant of the clinic I am currently undergoing treatment with was working on-call in the gynaecology department that night, so she did another TVS to examine if the endometriosis had spread further, and to also rule out any ruptured cysts. They instead found I also had adenomyosis, which is slightly different to endometriosis.

Source: https://www.instagram.com/the__endo__space/p/CntVNOnPowf/

Following my third hospital admission, I was put on a different progesterone pill called Provera, with the initial dosage of 30mg (3 tablets a day). The on-call gynaecologist who came to see me the morning after I was admitted onto the ward described the Provera tablet as essentially tricking my body into thinking I am pregnant, which in turn should limit the growth/spread of endometriosis in my body and prevent any future flare-ups of pain. My main concern was the mental health consequences, of which another gynaecologist thankfully was very honest with me, and told me to come off the progesterone straight away if my mental health deteriorated to the point of being unbearable. I’ve always been adamant that I never want to compromise my mental health for my physical health. It’s a compromise that should never have to be made by women anyway when it comes to their health, and my mental health is just as important to look after as my physical health. Unfortunately, I was so desperate for a treatment to work that I did eventually end up sacrificing my mental wellbeing whilst being on the progesterone treatment. The side effects were brutal – morning sickness, fever symptoms, hot flushes which drenched my entire body in sweat, fatigue, brain fog, memory issues just to name a few. I also for the first time in my life, really experienced depression whilst my body was getting used to the progesterone. I know that this was a side effect of the pill but having been lucky in life to never have suffered from depression, my brain went into a state of shock. I truly hit rock bottom, and had never felt so low in my life. I didn’t think I could survive the feeling of being so down, without hope for the future and miserable at my prospects. Being in constant agonising pain all day everyday definitely exacerbated the feelings of depression, so it was a vicious cycle. I felt like I was drowning and I’d never come up for air again.

Thankfully, my GP realised I was suffering with the progesterone, and she decided to reduce my dosage to 20mg to help ease some of the side effects. I noticed an almost immediate difference in myself afterwards, and I’m so grateful that she listened to my concerns because that situation was truly untenable. Because my mental health was deteriorating so rapidly, my GP also made a decision I would normally have fought against: she put me on a low dose of anti-depressant. Initially, I was adamant that I didn’t want to be on a medication that would control my moods, emotions and feelings. I was scared that the anti-depressant would control me. However, the emotional turmoil of being in pain all the time, and being in the worst pain of my life, meant that I was struggling on all fronts and I needed a bit of help sorting through those emotions. I’ve found that it’s so easy to fall into a spiral of thinking “why is this happening to me?”, “what have I done to deserve this pain?”, “how much longer can I cope with this condition?” and “why have I been so unlucky with my health for so long?” Those thoughts eventually consume you until you creep closer and closer into the darkness, and the one tablet of anti-depressant has honestly helped me through those spirals. Now, I have a clearer head when it comes to my attitude towards my endometriosis and I don’t fall into the depths of those dark spirals. Don’t get me wrong, I’m still so far from myself and who I was – my mental health is at an all time low, and there are days when I can barely bring myself to get out of bed and face the morning. I’m struggling with the reality of my endometriosis coming back and being worse than it ever has been, and some days I don’t want to talk to anyone, even my parents. But the anti-depressant helps push me out of these moments, and I suppose stop them from getting any worse, which I am grateful for. The first two weeks of starting the anti-depressant however were the worst two weeks of my life – your brain essentially suffers a chemical imbalance and my moods were truly all over the place. It took two weeks for my body and brain to get used to the pill, and it was horrifically tough to get through. But, I knew it would be worth it for the end result.

Managing severe pain with painkillers has been a struggle of its own. For at least the last 4 years, if not more, I’ve been told to take anti-inflammatory drugs before I take any stronger opioid pain killers due to the potential for addiction, of which I am well aware. This extends to taking ibuprofen, and then later mefenamic acid (4 doses a day), diclofenac (3 doses a day) and most recently, naproxen (2 doses a day). What health professionals don’t tell you is that long term use of non-steroidal anti-inflammatory drugs (NSAIDs) will affect your stomach. Around the time that I started the Provera progesterone treatment, I noticed that I was having severe upper abdominal pain as soon as I ate food, almost within seconds of my first couple of bites of food. I was told it could be indigestion or dyspepsia, a side effect of progesterone treatment. I was prescribed some omeprazole which works to block acid in the stomach to help with the pain. Unfortunately, the pain only got worse and worse, to the point where I would be doubled over in agony after each meal, writhing around. The upper abdominal pain became worse than my pelvic pain, which is when I became concerned. I was referred for an endoscopy to investigate if there was anything going on in my stomach, to find that I’d actually had a stomach ulcer this whole time, as well as something called erosive gastritis. My stomach lining was eroding away and a hole was being burnt into it because of the NSAIDs I was on. It’s really hard not to feel completely let down by the healthcare system when something that could have been so easily avoided happens, as well as it being another condition I have to deal with on top of a disease that I’m fighting for my life to live with. It seems like people in healthcare are so concerned about prescribing stronger pain killers to manage acute pain, that they’d rather risk a 28 year old getting a stomach ulcer, despite the fact that I’ve shown myself to be the most sensible when it comes to my pain management. Thankfully, I am on medication for the stomach ulcer and feel so much better after starting it, so fingers crossed it resolves itself soon.

Being dealt blow after blow takes its toll when living with an incurable disease. The reality of my situation has been tough to accept, and I’ve spent so many years pretending, putting on a brave face and smiling through agonising turmoil. The reality is, endometriosis is a horrific condition. People very rarely take it seriously unless they’re specialists within the field, they don’t believe the pain you’re in, and they treat it like period pain. 5 organs in my pelvis had to be operated on to remove diseased tissue, and people still struggle to believe me. It’s even harder coming to terms with the knowledge that I’ve exhausted every avenue of treatment available now, at the cost of my mental wellbeing. I can’t stay on the Provera treatment for more than a couple of months, as the risks are severe and higher than other treatments. Which leaves the inevitability of surgery, which would make this my third laparoscopy to treat endometriosis. It’s overwhelming, and it’s incredibly sad. It’s exhausting. I’m exhausted, I’ve been fighting my body for so long, that I really am running out of fight. I have a follow up appointment next week, of which most of it is going to be spent telling the consultant about how awful my life has been over the last 3 months.

The hidden torment of this disease isn’t just physical – it’s psychological too. We’re fighting our bodies every day, every night, and then putting ourselves back together again so we can show up for our family, our friends, our workplace. I so desperately wish I could say that it gets better, but right now I really am in the worst situation of my life. I just hope to God that the next time I write on here, it’s more positive. Because the reality of endometriosis fucking sucks.

A x

My Endometriosis Story Part 3 – Acceptance of Incurability & Endometriosis Awareness Month

Endometriosis

Reading my most recent post on this site leaves me with a lump in my throat – I was 8 months post-op after my second horrific operation to remove widespread, aggressive stage 4 endometriosis and things were finally starting to look up for me. Long story short, the second operation gave me a whole new lease on life for an entire year, which I’d say was a pretty good run.

I’ve always been hyperaware of the fact that endometriosis has no cure at present, especially when talking to others about this disease. It’s the cloud that’s been hanging over my head since my diagnosis three years ago, and I’d made peace with it eventually because even though it was incurable, at least it wasn’t terminal. And realistically, after a few operations, I figured I’d be rid of the worst of the pain, surely. I reckon that was a definite 50/50 denial and naivety, not helped by the lack of understanding and information out there about this disease.

I’m now 6 weeks shy of being 2 years post-op. I want so badly to say that my life has changed for the better and I’m a brand new, shiny person. I want even more so to say that pain is nothing but a mere memory of the struggles I’d faced. Neither of those are true, and it really fucking sucks. I can wholeheartedly admit that I took last year for granted; it was one of the best years of my life because I managed to live it to the full without being controlled by severe pain. It was a whole year of being pain-free. I was able to keep working without any big hitches, I went on my first solo holiday abroad, I had the best summer of my life too. Even though it didn’t last as long as I wanted it to, I’m bloody proud of what I achieved last year and the sheer fact that I thrived in any case. I achieved a win with last year, and I’m holding onto it.

Towards the end of the year, I found myself back in A&E again after experiencing pelvic pain so severe, I couldn’t cope with it at home on the opioids I’m given to manage pain flare-ups. A few weeks later, I found myself in the same position again, and thus, an unpredictable pattern was forming. The pain has been getting worse, more frequent, and it’s spreading to other parts of my body again. For a few weeks, I believe I was in denial that I could be back to square one again. I’ve found that, with endometriosis, you’re part of a vicious cycle –

As part of the vicious cycle, I forgot how bad the pain can really get, especially with the incredible year I’d had last year. I honestly forgot what this disease is capable of, and the damage it can cause not only physically but mentally, too. Someone at my workplace recently asked me to describe the pain and it took me some time to figure out how to really answer that – on a good day, the background pain feels similar to period pain, with cramps and aches which cause discomfort but is low in its severity. On a bad day, it’ll feel like an elastic band is being tightened around my pelvis, and my ovaries are being squeezed until they’re about to burst, along with the rest of the organs which are affected by the pain. On a really bad day, the pain is nothing short of what I imagine it would be like to have the contents of my pelvis scraped out repeatedly, with a serrated knife. The sharp, stabbing and persistent pain is why 9 times out of 10, I have to go to hospital because, (and take note of this, NHS), painkillers at home, even my friendly opiates, will not touch the sides of this pain. So when the triage nurses ask me to rate my pain, I tell them its 10/10 because at that moment, it feels like my body is shutting down and I feel like I’m dying. And in those moments, I have truly wished I was dead. Every single time.

After a while, you get used to being in pain. I’m in pain every day. Some days are better than others, some days I feel half tempted to book myself in for a radical hysterectomy. There’s very rarely any in-between. But, you learn to live with it because you have no choice. The alternative is allowing it to consume you, and there really is no surviving that. The hardest part of this disease is the way people react to it – and I’m calling out all the healthcare professionals who I’ve dealt with here (excluding my private endometriosis surgeon who saved my life). Whilst I’m aware of the privilege of our NHS, I’ve experienced the worst side of it and I can’t keep quiet about it just because of the nationwide crisis at the hands of our corrupt and useless government. There’s also a global crisis within women’s health which people are not taking seriously enough, and haven’t done so for centuries. My gallbladder was removed unnecessarily because I was diagnosed wrong. I had needles of anaesthetic pumped into my spine because I was diagnosed wrong. I was forced to undergo needless, invasive procedures because doctors thought I had gastroenteritis. One doctor told me it was ‘phantom pain’ which didn’t exist, and was all in my head even though it ‘felt very real’, and suggested I see a therapist about it. Maybe the reason for such a fundamental flaw in our healthcare system is because the last time NICE guidelines in how to treat endometriosis was updated was in 2017. This disease has to be taken more seriously, and change can only start from the top otherwise the results are what I’ve experienced first-hand in hospital consistently since I was 16. Negligence, trauma which now requires me to seek therapy to process and not to mention further worsening of an already painful and incurable condition. The fact that I’ve rated my pain as 10/10 to triage nurses in A&E over the last few years, only for them to categorise me as ‘non-urgent’ on the paperwork makes me sick to my stomach. Whilst I can appreciate that a potential cardiac arrest is more life-threatening than endometriosis, the standard of care must be kept the same across all illnesses. My condition is incurable which is bad enough, but being treated like the pain is just period pain cramping takes a toll on my mental health that I’ll never fully recover from. Women should not be made to tolerate this just because we have a uterus, because I can bet all my money that if men experienced this disease, a cure would have been found yesterday. We shouldn’t be at the point where we go to hospital only to be made to beg for painkillers. Nor should we be at the point of hysterically crying and writhing around, doubled over on a chair in the waiting room to reach the threshold of being in enough pain in a doctor’s eye to receive painkillers. And needing pain relief from hospital doesn’t make us substance abusers. Unfortunately, we really have NO other choice, and there’s so many things I’d rather be doing than crying at the knees of an unrelenting doctor to give me something, anything, to take the pain away.

I don’t know why women are expected to go through this and just deal with it without any support or understanding from those who are supposed to be there, and trained, to take care of us. I don’t know why it takes on average 8 YEARS for a woman to be diagnosed with the disease. I think that’s fucking ridiculous. It scares me to think of how many young women are out there, that are being sent home by doctors without any follow-up, scans or further investigations in place when they could have endometriosis. It’s a paralysing concept, and the severity of the situation cannot be understated. Whilst I am so proud and thrilled to see that more people are taking it upon themselves to learn more about this disease and understand our plight in greater depth, this same attitude must come from the top of the NHS food chain, and then filtered right down to every single healthcare employee, from doctors to nurses to surgeons to sonographers. Take this pain more seriously because even though it might not be a case of life and death for us, it definitely feels like it.

I’ve been failed more times than I can count by those who were supposed to treat me. I’ve been let down badly, and I refuse to believe that systemic racism and sexism did not play a big part in this. But in the midst of all of that, I stumbled across a surgeon who saved me and for that I will be eternally grateful. So on this Endometriosis Awareness Month, I am on my knees begging for someone to pump more funding into the research of endometriosis so our only treatment options don’t just consist of hormone therapy and surgery, and also into the training of doctors and nurses in how to TREAT sufferers of endometriosis when they come through their doors in pain that no one will ever be able to understand. The healthcare system needs to do better when it comes to endometriosis, and that can only start from the top.

And I won’t stop screaming until I’m heard.

A x

Panorama: 26th October 2015 – Britain’s Mental Health Crisis

Mental Health Activism & Awareness

After watching Panorama’s recent documentary tonight, I’m appalled at the state of mental health care. Of course, this is not the first reminder of the terrible state the government cuts have reduced the trusts to, but it’s an imperative reminder to all of us that we need to raise awareness for those vulnerable citizens silenced by their psychological disorders.

Firstly, the assessment of those “less ill” to free more beds for furthermore patients. Sickening. A patient who had the intention of committing suicide at a train station shouldn’t be “assessed” on whether or not they’re worthy of a bed: this is nonnegotiable. Vulnerable citizens are silenced due to their psychological conditions which is the most shameful fact of all. I’ve said this before and I’ll say it again: a cancer patient or a terminally ill patient ill not be refused a bed, neither will they be “assessed” on how unwell they are. They’d be given a bed as soon as possible, with the professionals working as hard as they can to get them on the road to recovery, or at least to make sure they’re not suffering as much. Why aren’t mental health patients treated with the same urgency?

How can patients, who are assessed to be suffering from their health conditions to a great extent, but not as great as other patients, say suicidal, be cast out into the community with no social help or support system to rely on if they relapse? Where’s the security that they’ll be helped if they ever feel vulnerable or have a bad day? This isn’t just a disgrace, it’s an atrocity and complete disregard for mental health sufferers.

Fundamentally, patients are judged on their suffering. As someone who’s been rushed to a&e 11 times over the past two years with multiple health conditions, I know that patients are assessed on how much pain they’re in. The more pain you’re in, the quicker you are treated. As a sufferer of anxiety which almost crippled me to not leaving my house for weeks on end, my parents and I felt I had no choice but to receive private help as my condition was too serious to be thrown onto a waiting list, which could take up to six months. This is where the problem lies, and where it will continue to lie until the stigma attached to mental health has dissolved. Most people cannot afford private healthcare, let alone private mental healthcare. How can the government expect a patient to pay £1000 a day to receive help and support which needs to be offered free, and is easily accessible?

I urge as many of you as possible to sign the petition below, which, if 100,000 signatures are received, the parliament will be obliged to take action and debate the bed crisis.

https://petition.parliament.uk/petitions/109889

This is an increasingly concerning situation and we are all ambassadors for those in need of our support and help. Together we can make a difference, and we will.

A x