femalehealth

MY ENDOMETRIOSIS STORY PART 4 – REALITY

Endometriosis

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 Zoladex Experience

Endometriosis

I can’t even remember the last time I wrote about my health on this site, which is a huge indication of a lot of time having passed, along with various health hurdles along the way to discuss. First and foremost, this post is solely discussing my experience with the Zoladex Implant (3.6mg) as a form of treating endometriosis. I’ll be discussing more in-depth about my endometriosis journey, from diagnosis to where I am now in terms of treatment, general (and mental) wellbeing etc, in another post as I’m still figuring out how to articulate what exactly I’ve been through. Chronic endometriosis pain is incredibly traumatic, and re-visiting some suppressed memories of a&e visits/flare-ups is taking its toll on me. Bare with, it will be live on the site as soon as I can bring myself to compartmentalise effectively enough to write coherently.

I was diagnosed as in-between Stage 3 and Stage 4 endometriosis in May 2020, following a very reluctant decision to perform a diagnostic laparoscopy. Here’s a very brief breakdown of what the different stages entail:

Stage I – Minimal (Some deposits of endometriosis, low in frequency)
Stage II – Mild (More deposits of endometriosis, deeper scarring)
Stage III – Moderate (Deeper, more frequent deposits of endometriosis tissue; small ovarian cyst(s) & scar tissue)
Stage IV – Severe (Widespread endometriosis, large ovarian cyst(s) & widespread scar tissue)

Following the removal of widespread endometriosis deposits found across, inside and outside my uterus during my laparoscopy in May, I was fitted with an IUD – the Mirena coil. I was told to wait 6 months to feel the effects of the coil, which would include a significant reduction in severe, acute pain and periods either becoming less painful, less heavy or stopping altogether. Unfortunately, it was found that the Mirena coil isn’t enough by itself treat the endometriosis that still remains in my womb and so, 9 months and 2 different contraceptive pill treatments later, I was given the Zoladex implant injection to be administered once a month for three months. Zoladex induces a chemical menopause, temporarily ceasing the production of oestrogen from the ovaries. When it was suggested in January by the first gynaecologist I’d seen on the NHS who specialises in endometriosis since I was diagnosed, I was desperate to alleviate my symptoms and agreed to give it a go. I explained to the doctor my main concerns – the side effects; weight gain, hot flashes and most importantly, the effect this hormone treatment would have on my mental health. He assured me that this injection, for the majority, causes very few side effects especially concerning the fluctuation of mood and any effects on pre-existing mental health disorders. I subsequently wholeheartedly agreed to give this form of treatment a go, since most of the other treatment options have been exhausted and I’m left with very little alternative other than surgery.

I had my first injection on the 14th January (a lot of people on forums relating to endometriosis complained and feared about the size of the needle, but you won’t feel a thing and if you do, it’s over in a split second). Within two weeks of the injection, I started to notice a few side effects – mostly irritability and general mood swings, but nothing dissimilar to what normally happens during a period. I still got my period at the end of the month, right on cue and I’m sure this is predominately due to the fact that the injection hadn’t fully kicked in yet.

Around three weeks post-injection, I started to feel the full brunt of all the side effects I was dreading. Towards the beginning of the week, my mental health plummeted to an all-time low; I felt constantly upset despite having absolutely no reason to be sad. Normally when I feel my anxiety starting to spiral, I give myself a day to feel everything my brain is forcing me to feel; I don’t instantly try to seek answers and explanations as, for me personally, that results in a vicious cycle of overthinking, overanalysing and subsequently feeling overwhelmed with different possible reasons behind my mental health flare-ups. I followed this exact protocol during the third week post-injection, and on the following day I attempted to begin compartmentalising any stresses or emotions which could potentially become a trigger for my mental health, but I came up empty. It’s a rarity to say this, but at this current point in my life I am absolutely okay and better yet, happy and content (given the situation we’re in), which left no reason for feeling as if my life was falling apart and I couldn’t cope. I decided to keep myself busy and productive – sometimes when I’m having a ‘low’ day, it can be because I’ve felt like I haven’t achieved anything or made use of my day and time. However, even keeping busy was fruitless as I found myself in tears every night that week.

Aside from my deteriorating mental health, the other side effect I struggled with the most was hot flashes. I was told to watch out for this, as it’s the most commonly reported side effect of the injection (1 in 10 women report experiencing it). I didn’t really think much of it to begin with – I thought I could handle getting a little warm every now and then, but nothing really prepares you for sleepless nights with two bedroom windows open to cool you down, when it’s just above freezing outside but your body is convinced it’s the height of summer. My body would be freezing to the touch, yet I’d be sweating constantly through the night until 4am. It would also hit me like a truck out of nowhere – one minute I’d be walking outdoors somewhere, the next I’d be drenched in sweat from head to toe and getting hotter by the second. At times it would be impossible to cool down and I’d just have to ride it out by simply waiting until the hot flash disappeared. The only way I’m managing to combat this side effect is my keeping my windows open from around 11pm when I’m about to get ready to sleep, until I wake up in the morning. Naturally, my room could be mistaken for a fridge when I wake up but I manage to sleep a little easier when the temperature in my room falls below 7 degrees.

Other side effects I experienced to a much lesser degree included fatigue, hair loss and my skin breaking out in spots. Another commonly reported side effect is acne, which I didn’t experience, but I usually keep to a strict skincare regimen and stepped up skincare product game by using certain serums which target skin prone to hormonal acne. That being said, I noticed that despite my best efforts I did break out in spots all across my chin under my lips which is something I’ve never had before. I’ve heard from multiple dermatologists that spots/acne around the chin are reflective of hormonal imbalances, so I’m just sticking to products recommended to target breakouts in that area (Azelaic Acid & Vitamin C) and hoping for the best. Breakouts aren’t the best but I do consider this side effect the lesser of the 3/4/5 evils. I’m also no stranger to fatigue but found myself needing to take a nap in the evenings at around 8-9pm because my energy levels plummeted to the point where I couldn’t physically function – I was unable to hold a conversation, or pay attention to simple things like reading a book or watching Netflix. My body felt heavy and small tasks like walking up the stairs took every ounce of energy I had, where I’d have to sit down once I’d got up the stairs. The hair loss side effect didn’t affect me greatly since I didn’t really notice it in the beginning. I only acknowledged something was different when I was in the shower and strands of it would fall out when I’d wash my hair, but for me personally, this wasn’t even remotely problematic. It is worth noting that Zoladex isn’t known to cause weight gain as a side effect, however everyone responds differently to different treatments so there’s no definitive way of ruling it out as a possibility for some people. I didn’t experience any problems with appetite or weight gain/loss with the injection, as I have done with past contraceptive pills and endometriosis treatments.

Ultimately, I can say with the utmost clarity that the Zoladex injection proved incredibly problematic and in many ways, traumatising for me. The two greatest obstacles I came across whilst my body was adjusting to the drug were the effect on my mental health and the hot flashes. My anxiety is normally incredibly well-controlled – I haven’t had a significantly awful anxiety attack or panic attack for over a year now, so these relatively new feelings of despair took me by surprise and honestly, fear. I have a method of approach when I feel anxiety attacks coming on, or if I’m generally feeling quite low. I try to be as methodical as possible to ensure I feel better as quickly as I can whilst trying to acknowledge any explicit or underlying triggers, so what I went through that week was nothing short of terrifying. There’s no real way of effectively articulating how you’re feeling when you think you’re at rock bottom – in hindsight, I can now say with complete clarity and confidence that I wasn’t actually at rock bottom, the hormones convinced me I was.

I should reiterate that this injection does induce an artificial menopause which, naturally, comes with menopausal symptoms. I have sincere sympathy for people who experience menopause because from the brief glimmer of insight into it that I received, it was horrific and agonising. I’m nearly 25 years old – I think this form of treatment isn’t the best option for me personally for two reasons. Firstly, I don’t think anyone should have to experience menopause at any time of their lives, but especially not young women whose hormones are running wild all day everyday anyway (I understand that some women elect to undergo medical menopause through hysterectomy, I respect and acknowledge that). Secondly, I’ve experienced a lifetime’s worth of pain whilst struggling with endometriosis and whilst this treatment is designed to provide ‘respite’ from the intense pain, it most certainly achieved the opposite for me. On top of endometriosis-related pain and period-related pain, I was experiencing the side effects listed above. This combination effected me in more ways than I can comprehend.

Finally, I cannot stress enough the awareness that every person reacts differently to different treatments and drugs. I am fully aware that not everyone will share the same or similar experiences to mine, but as I start to raise awareness and share my story with the world, I want to be as transparent and honest about my journey as I can. I want people who may think they could have endometriosis, or are considering exploring the possibilities of certain treatments, or who just want some more information, to have access to resources and fundamentally, personal stories and emotional insight from someone who’s been there and wished they had it when they needed it the most. This condition is so common, yet so difficult to diagnose – the in-between stages are close to unbearable and I salute with pride the women who have come through the other side with strength and perseverance in their battle against this horrific disease.

A x