Healing Hurts Sometimes: Medical PTSD & Endometriosis

This was not the next blog I intended to write; my fading mind and withering heart won over any rationality. In short, I had a complete mental breakdown.

I began this blog sitting on my sofa on a bright Tuesday evening, watching another Channel 4 comedy-drama, and I could not stop crying. In part, the heartwrenching scenes in Queenie encouraged that. I found myself between breathless panic attacks and complete dissociation from my body.

That evening, I wrote the following in my mood diary:

"My head is in a terrible place. I am crumbling. I don't have in me to fight anymore. Help is hard to get, and I no longer see any point. I no longer have the energy to fight and am losing my breath. It is so hard to breathe now. The last two months have been so difficult I just can't do it anymore. This is where I am. I hate that endo and medical trauma have made me so terrified of my own body that I can't trust anything it does. I can't properly enjoy sex. I have to try so hard to leave my mind away and just get out of my head. I don't know what it is like to be a person anymore. I just want to disappear. I want a break from this body, from this life; it is too hard. I am so scared of doing anything alone anymore. I am so scared of being on my own. I am scared of dying, but at the same time, I am finding it really hard to be here anymore."

Endometriosis is a bitch, and I hate it with every fibre of my being. As much as I feel hopeless and broken, I am so fucking angry. I am angry at the way I have been treated, furious for the way millions of us with this condition are treated.

I hate that it has robbed me of so much, of a life I imagined, and now I struggle to imagine a future because I have no stability in my present. I can't love and light myself out of a shit disease. I have no idea why it occurs in my body, apart from it just happens to some people assigned female at birth.

Anger is a healthy emotion, and I don't express it much. I don't know how to. It only comes out as violent tears, which I now feel I can't use unless the pain is truly excruciating. Otherwise, I am just a constantly sad and crying person.

Nothing could have prepared me for the pain continuing after surgery. You always hope you are one of the few where one surgery is enough and you can manage life. How naive of me to think that was a possibility. Instead, I have had a hellscape of 12 months post-excision surgery. I can say for sure my pain has lessened, but it is still just as crippling.

At the end of summer 2023, I began to feel the immediate effects of the excised endometriosis, and things were easier. I enjoyed the transition from summer to early autumn; I came off dihydrocodeine and then co-codamol to just paracetamol. As autumn settled in and winter began to make herself known, pain picked up, and soon I was back on the concoction of codeine to get me through work and day-to-day life.

2024 arrived, I felt like I was not getting on well with my Mirena IUD, and upon speaking with the GP at my surgery who specialises in the insertion and removal of them, I felt pressured to keep it in because she thought I would be worse off without it. I felt at such a loss because I was expected to wait a whole year until it might settle.

Things began to get worse until I reached a breaking point in February, and I took a trip to A&E because dihydrocodeine was no longer working for me, and I had lost the mental ability to cope.

The A&E trip was useless; the diagnosis of endometriosis did not help me, and it was treated as a flare-up. I was told to do yoga and take a holistic approach when the reason I desperately turned to the hospital was because high-strength painkillers stopped working, and I could barely walk and barely stand to brush my teeth without being in streams of tears.

But, no, yoga will cure it!

Since then, I have not been to A&E despite being in unbearable pain that a concoction of tramadol, paracetamol, THC edibles, and flowers could not knock me out, and I spent the night tossing and turning in tears. Honestly, it amazed me how much I could cry with so little water in my body, thanks to nausea!

I spent the night before my 26th birthday in Venice vomiting four times because I was in excruciating pain from spending the day walking around the city. I pushed myself because clearly, to the doctors, I was fine, and vomiting four times, unable to keep down food and using a walking stick are all normal things a person with endometriosis should experience.

The day after my 26th birthday, I saw the endometriosis specialist who did my surgery. Luckily, my parents said they would pay for me to see him because I was in a state. That is when I began the chemical menopause, which initially was great; I got a lot of my life back and relied less on painkillers, and medical cannabis was able to control the pain better.

May 2024 was the worst month of my year so far. I had a colonoscopy, which in itself was fine, and the nurses were great. They told me they could and would make me feel more comfortable when something hurt. That came back clear, and from every member of the gastro team I spoke to, everyone suggested it was endometriosis-related as my insides were all perfectly normal.

Something I already knew but was continually being told it wasn't because I had an expert surgery. Not that it could be deep infiltrating endometriosis or that my endo could have grown back quicker, as it’s not uncommon to grow back months after surgery.

No one wanted to accept that maybe it was endometriosis, or perhaps it was the coil and my body not agreeing with it.

After my third prostap (chemical menopause) injection, something was very wrong. I had debilitating migraines a few days afterwards, to the point all I could do was sit in the dark of my bedroom. Even wearing my glasses was extremely painful. My GP did say the estrogen may be causing the migraines, but I did not have those issues with the other injections.

I then had a follow-up gynaecology appointment at my local NHS hospital. The doctor could not tell me what was happening, and at that point, I was begging to have the menopause stopped and the coil out because it felt like these hormonal interventions were just not working with my body, and I was tired of feeling so out of control. I am unable to regulate my emotions and am always on edge for the next type of pain.

The appointment was useless; pregnancy was suggested because I am in a long-term relationship, and I did not want to rule out children altogether, but I was in no way planning to have any time soon.

I tried to ask for the coil removal and what pain relief would be available, and she just kept avoiding that question, telling me it would be painless as someone who has been feeling extreme pelvic pain and has PTSD from painful pelvic examinations and an initial traumatic Mirena insertion attempt.

I felt so unsafe in that room that I refused her examination to check the Mirena placement because I had been examined so many times, and my threads had never been visible. There was no way I was letting a doctor who suggested pregnancy try and examine me.

I did not feel safe.

I had the worst panic attack of my life in that room, and that genuinely cemented in me that I could never seek help there again because there was indeed no point. The risks of coming out mentally traumatised were much higher than receiving any help.

A few days later, I passed one of the most significant blood clots I had ever passed in my life, without or without any hormonal birth control. I was genuinely terrified I would heavily bleed through the night, faint and hurt myself, and I knew at that point I should have gone to the hospital for help. I could barely keep my eyes open to hobble back to the bedroom.

Luckily, the bleeding stopped, and I stopped using the estrogel because I kept having horrific migraines that sumatriptan even struggled to help with.

My parents visited me the next day, and they told me just to see the private specialist and not worry about money because they would help. The state I was in was awful, and they did not want to see me traumatised anymore. I made an appointment with the specialist the week after and got some real answers.

Essentially, I had still been applying estrogen when the menopause injection just hadn't worked, so I had my body's natural estrogen production and extra on top. Hence, the migraines, excruciating cramps and heavy bleeding.

The solution was to apply less until the prostap was entirely out of my system to protect my bones and help with the hot flushes. We then spoke through my other options because I felt like the coil wasn't working for me; he offered to take it out then, but mentally and physically, I wasn't prepared for it, and even upon examination, it could not be visualised.

Instead, a new progestogen only pill was recommended, Slynd. It contains drosperinone and is supposed to be a nicer form of progesterone, which I may get along with. It is relatively new in the UK and less aggressive than trying out Zoladex injections, another form of chemical menopause.

I was also assured it is normal for the Mirena to drop a little without causing any problems, but we would have to see on the next ultrasound how far or where it had migrated to before considering removal.

Soon, I got my letter for the ultrasound on June 7. I cannot tell you how many ultrasounds I have had this year alone, and all clear. This one was the worst I had ever experienced; even in my highest pain pre-excision surgery, I could tolerate the internal ultrasound, but this time, I couldn't and even my pitiful attempts to carry on were stopped by the sonographer because they did not want to cause me extra harm.

I left the appointment with the knowledge the coil had dropped a bit and no understanding of how the increased estrogen could have affected my ovaries because they couldn't be examined due to pain.

As I began to take Slynd, the next period I got was one of the lowest pain periods I have had in a long time, granted the bleeding period is nine days long so far. I was able to do a lot of things I couldn't do on my period, and it was promising I finally had something to help with symptom management.

But the mental toll of having the Mirena in was still affecting me so poorly; since having it in, I have experienced body dysmorphia and feeling like my body is not mine with it in. Unexplained pains and just tired of having to go for an ultrasound after the ultrasound to check that the Mirena is not the problem, the strings never being visualised and painful speculum exam after exam.

My mind had been pushed to breaking point, which was destroyed by one little phone call.

The NHS gynae team wanted to see me due to my scan; I had never received a call so quickly for an appointment with them ever, which concerned me. But the thing that crumbled any stability in my mental state was the appointment was due to be with the doctor who recommended pregnancy and would not tell me what pain relief would be available or how to make the Mirena removal more comfortable for me.

Most days since then, I have had some sort of breakdown about it. I cannot talk or plan the appointment with my partner without having a severe panic attack, and even as I write these sentences, I am fighting back the tears as my hands shakily tap at the keys. Nausea is at its peak, and as I both feel highly anxious, I feel so empty and ghost-like.

It either feels everything or detaches from my body to allow my brain a break. The worst thing to come out of this illness is not the physical pain, the long-term nature of it, the uncertainty or no cure. It is the medical post-traumatic stress disorder. I am not formally diagnosed, but I know my body and brain and what this experience has done to me.

The term post-traumatic doesn't even apply to this situation because I am still living it, and I will live this way my whole life. The damage from not being believed, being invalidated and feeling like I have to have specific treatments or my pain isn't extreme enough, life-threatening enough, and cannot be repaired.

I can try breathing techniques and have safety protocols in place, but that does not change how my body reacts to being sat in the gynaecology clinic waiting room. My appointment is on Friday, 5 July, and I can't rest; I won't be able to until it is done. I will have my partner with me, but that doesn't stop my brain and body from feeling how it does about that place and that doctor. I can feel it now, and it is like I am being choked, struggling to breathe or get the words out.

It's so exhausting. I am tired of it, and talking therapies haven't helped that much with panic. I hate that I have to drug myself up so much to attend these appointments in case of a painful exam or to try and calm my nerves. I feel weak and powerless.

I pick up to finish this blog on Saturday, 30 June. Today, I am not sure what happened, but whilst I was blow drying my hair, I broke down in tears, crying the whole way through as I took multiple breaks and needed a fan to cool me down because the act of blow drying my hair sends my body out of whack and it exhausts me.

A few hours later, I think it's because this is my new reality. I need to have a fan on to blow dry my hair. It takes three times as long as it would usually take, and that is something I haven't had much time to sit with because, after my surgery, a lot of things happened regarding my health, so many different treatments and procedures I never really had the time to sit with the reality of my situation; the chronic nature of endometriosis and the mental toll and readjustment of this. Instead, it has visited in outbursts of tears and strange, hollow feelings I struggle to feel or know why they are there and making me cry at that time.

Medical PTSD is one of the most challenging things I have had to reckon with on the journey to an endometriosis diagnosis and into the period of management.

I don't feel comfortable saying recovery because surgical recovery should have been it, but as you can see, it wasn't. Management is a more straightforward term for my brain to cope with because it has a fluidity to it and doesn't imply a cure, but how I can try and find a better way to live with chronic pain.

In terms of PTSD, I don't know if I will fully manage this; I want to be able to feel safe and like I can trust hospitals and doctors, but I also need evidence of this from my experiences with doctors in my local hospital. I have not had this so far, so it is tough for me to rationalise with the extreme, irrational side of my brain to comfort my body.

I don't know how to stop my body from feeling an adverse visceral reaction when I am in that hospital, even if I go in with an open mindset, as I think tension in my whole body, nausea and sweats.

I try to tell myself I am safe, I have my notes, I have control and not every doctor is the same. But when you are constantly trying to tell your brain not to think the worst, to calm down to think now is not as bad as pre-surgery, it is exhausting, and I fail.

I chose the name of this blog after the song Healing Hurts by Blü Eyes, as the song really summarises what life after surgery has been like and, in particular, my 2024 journey with endometriosis.