I do remain dissatisfied
By: Katharina Guenther
Tags: Periods, Nhs, Patriarchy, Healthcare

I am 29. I go to a sexual health clinic to ask for advice about my periods. After almost two decades with no problems and regular, light bleeding, they seem to be getting heavier. The staff member assures me that this is quite normal, since I use the copper coil. I have had the coil for three years with no issues, but assume that healthcare professionals know what they are talking about.

The coil starts to feel weird inside me. I go to a different clinic and they say that that just happens, sometimes the body starts rejecting the coil. They recommend I have it removed. Removal does not hurt nearly as much as getting it inside me.

But the bleeding persists. I go again to a clinic. The doctor looks at me a bit puzzled and points out that he specialises in tropical and infectious diseases. Not quite what I need.

I switch from one type of pill to another. One night I wake up in my partner’s bed and realise I am laying in something wet. I get up and blood runs down my legs. I cry silently while I shower. My partner wakes up to me scrubbing his beige carpets at 3am. The flat looks like a crime scene, there is blood everywhere — bloody finger prints on the light switches, bloody footprints, blood splatter all over the bathroom. When my partners moves out a few months later, he gets the carpets professionally cleaned in the hope of getting his deposit back.

A few weeks later, on my way back from work, I stop by Lidl. Next to the special buys aisle I suddenly feel a gush of blood leaking through my cycling shorts, blood trickling down my naked calves. While I cycle home more and more blood soaks into my bike saddle. I ask friends for recommendations for a new saddle.

I switch from tampons to pads, since the latter are constantly uncomfortable but do not fail suddenly and spectacularly like tampons do.

I feel like I am running out of options in terms of contraceptives. Apart from the injection and the patch, I have tried every single method and yet the periods are getting worse. Maybe my body does not deal well with hormonal contraception anymore? I do not want to have children anyway and look up the NICE guidelines to check that I am eligible for a sterilisation. After I drop the word “complaint” in our discussions, my GP agrees to refer me to hospital.

A junior doctor sits down with me and tells me in what I assume is her empathetic voice that she is a similar age to me and does not want children now, but maybe in a few years. I do not care about whether she wants children. I feel patronised and start crying out of frustration. She gets the consultant in, who seems to assume that I do not know how a sterilisation works and reminds me that it is a permanent procedure. What if I want to have children in ten years? I want to shout at him that in ten years I will be 39 and would be unlikely to fall pregnant without the help of IVF anyway, which I could still do after a sterilisation. He then tells me that if his colleague agrees I can have my sterilisation. I am confused — if he is worried that I am not sure about my decision, a psychologist might be helpful, but I am not sure what another gynaecologist can add here. When I mention the bleeding, he informs me that women think they are losing much more blood than they actually do.

While I wait for the next appointment, I continue bleeding. I bleed so much that my body thinks I am exsanguinating and tries to make my blood clot, resulting in tennis ball sized clots.

I am a prison lawyer and regularly visit clients in jail. But the English prison system is convinced that I will smuggle contraband hidden in tampons or pads into prison, so I am not allowed to bring them into prison. Instead I change my pads in the dingy prison visitor toilets located outside of the main prison, often without running water and faeces smeared everywhere. Once I am inside the prison I have to beg officers to please, please, please escort me to and unlock the toilet and then stuff half a roll of grey, scratchy institutional toilet paper into my pants. I now only wear black trousers. That nice grey pant suit I bought some time ago is staying in the wardrobe.

The second consultant is a no-nonsense woman. She immediately agrees I can have a sterilisation, but is also the first person to listen to me speaking about the bleeding. A quick ultrasound confirms that I have fibroids, benign tumours, in my uterus. I call them Tom and Jerry. She offers to remove them while I am on the operating table for the sterilisation. In the meantime she prescribes tranexamic acid, a life saver. It helps clotting and thereby preventing bleeding not only after major trauma, but also if your uterus hates you.

I prepare for the surgery. Apparently one needs a dressing gown. I have not owned one in 20 years. My mother has a light yellow one, which she wore four times: for the birth of each of her children and for her own sterilisation. I am not planning on making this a regular thing, so I just borrow my housemate’s.

The surgery goes well and I am discharged the same day. I am like a beached whale in bed, unable to get out since I cannot use my abdominal muscles. My youngest sister, who works as a nurse, texts me instructions on how to move. No one bothered to explain this to me in hospital.

In the following days it becomes clear that my grandfather is dying, so I book a flight. I get to see my grandfather one last time, but at the same time I am missing my own 30th birthday party back in London. My parents take me out for dinner and my sister, the nurse, joins us. One of my stitches has refused to dissolve and become very uncomfortable. My sister has brought all the necessary equipment to remove it. Because it is too dark in the cubicles, I stand in the dimly lit ladies room of the restaurant next to the wash basins, with my trousers down, my sister kneeling in front of me with scalpel and tweezers and I giggle at the thought of how we would explain this set up to anyone entering the room.

The next year is amazing. I can just live my life, with normal periods. But slowly the bleeding gets heavier again, despite me still taking tranexamic acid. My GP refers me back to hospital.

While I am waiting for an appointment, my period is almost two weeks late and I am in incredible pain. My partner picks me up from work and takes me to a walk in centre, which sends me to A&E. There I am given opioids intravenously. But I cannot have a scan there and then and instead have to come back the next day. I get an urgent appointment with a consultant specialising in fibroids. When I see him, he seems disappointed and almost angry about the fact that I have bog-standard fibroids, which are not doing anything exciting like twisting or dying inside me. He suggests I might just be constipated. I do not point out that his colleagues gave me opioids two nights ago, which predictably resulted in constipation. My medical records state that I have “unexplained abdominal pain”.

When I finally have my appointment, the consultant suggests some treatments, one of them a hysterectomy, that is the removal of the uterus. 18 months ago I had to fight to get a sterilisation and now you have run out of ideas and just want to take the whole shebang out? In the end we agree on an endometrial ablation, where the lining of the uterus is removed. With no lining, there should be less bleeding.

This time I borrow my partner’s dressing gown. After I am brought back to recovery, the consultant comes by and breezily tells me that I had a complication called fluid overload and they could not finish the ablation. Apparently my uterus decided to absorb the fluid it was filled with for the procedure. I later google “fluid overload” and it sounds way scarier than the description given to me by the consultant.

My body refuses to accept that I have had surgery to get rid of the bleeding and it continues to bleed heavily. At the follow up appointment the hysterectomy is back on the table and I ask for some more time to think about whether I want another procedure. At the second appointment a random male medical student also sits in the room and the consultant asks me whether I have now done all the research I wanted to do. No, I have not managed to complete a PhD in the treatment of fibroids, thank you very much. But I am still very disturbed that there seems to be no better option than just taking everything out. I ask to be discharged from the service.

Six months later it is clear that I am really not fine. My GP refers me for another ultrasound. The technician doing the ultrasound seems to have forgotten that there is a whole human around that uterus while she stares at her screen and stirs the ultrasound wand inside me.

The results are back and my GP refers me back to hospital. I ask to be referred to a different hospital.

The hospital sends me a letter, asking me to contact them if I have not received an appointment by a certain date. When I call the hospital after that date, the woman answering the phone cheerily says that that was just a form letter, at the moment they do not even know when they will have appointments available.

The pandemic hits and I start working from home. Life gets much more relaxing when you know that at worst you will bleed onto your wipeable kitchen chair instead of a soft chair in the office and you can easily change your trousers in the middle of the day.

But in addition to the horrible bleeding, I start getting weird pains and cramps. Thanks to constant video conferencing I realise that the pain causes me to wince noticeably. And I experience incontinence. I become desperate and start chasing up the hospital.

Ten months after the referral I have a relatively short phone call with a junior doctor I will never meet or hear from again. My periods are now a whole month’s affair and I am so desperate that I agree to a hysterectomy on the phone. He asks me whether I have any questions, but I do not know enough to even have questions. He tells me that while waiting for the surgery, I will have injections to induce menopause, as this will shrink the fibroids.

I later look up the medication and find out that it can only be prescribed once, for three months, because of the side effects and that some of these can continue even after the treatment is supposed to have worn off. When the official letter from the hospital comes through, I realise that I have been scheduled for a total hysterectomy, where everything including the cervix is removed. It looks like doctors here do not trust patients to turn up to their smear tests and therefore generally do total hysterectomies.

I start reading books on hysterectomies. Many of them are written from a US-American perspective, about choosing your doctor, deciding the exact treatment you want and scheduling your procedure. In the meantime I am waiting for the NHS to allocate me a surgery date and a surgeon. I have many questions, but no one to answer them. Can I keep my cervix? Do I really need to get the menopause injection? No one from the hospital has contacted me to arrange the injection and I decide to not chase them up for once.

In December I get a surgery date for February. I spend two months reorganising my life and work — by now I am a self-employed solicitor — to accommodate the surgery. Thanks to the pandemic many hearings have moved to video links, but I assume the Parole Board is not very keen on getting legal representations straight from a hospital bed.

During the pre-assessment for the surgery, the nurse tells me that I absolutely need to get the injections and might otherwise jeopardise my surgery. I try to communicate with my clinical team via a cumbersome online platform. I get voicemails from withheld numbers and people not giving their names or phone numbers, asking me to get in contact with them.

Then my surgery is cancelled. Not because of the pandemic, but because of an “admin day”. At the same time I find out that due to the pandemic the hospital is not providing the menopause injections, even if I wanted them. I get a three minute call with the surgeon, who confirms that I can keep my cervix and do not need the injections.

My colleague and mentor helps me to write a formal complaint about the long delays and the administrative nightmare that has been dealing with the hospital. As a solicitor complaining is my bread and butter, but I find it hard to write a formal complaint, based on guidance and the NHS Constitution, about my own case. I just want to write over and over in all caps that I cannot cope anymore.

Of course the response to the complaint about delays is severely delayed itself and does not deal with the issues I raised. My mentor is enraged on my behalf and drafts a letter to the hospital’s CEO, which contains the memorable sentences “Your letter invites me not to hesitate to write to you if I remain dissatisfied. I do remain dissatisfied.” Maybe I should get that printed on a t-shirt.

I give in and reluctantly order another set of extremely expensive period pants. And then, after I have cut off the tags and cannot return them anymore, I suddenly get another voicemail: I can have my surgery in three weeks! But this also means that I have to go into self-isolation in one week. I spend three weeks working nights and weekends to prepare for a few days of absence and my colleague agrees to take over a hearing scheduled for two days after the surgery. I sleep little, there is just so much to do.

By now I am so very desperate that I am positively excited about having major abdominal surgery.

I pack a hospital bag and this time I do not even bother bringing a dressing gown.

When I wake up after the surgery, I am in incredible pain. I do not move at all for almost 24 hours and lie in the hospital bed very still. It is only the next day, when I get up for the first time, that I realise that in addition to three small plasters I also have a large dressing just above the pubic hair line. A doctor comes by and informs that during the surgery they found my uterus to be the size of a pregnancy at 18 weeks because of all the fibroids and it could not be removed through key hole surgery. Instead a bigger cut had to be made. When I am discharged later that day, the letter to my GP states that my surgery was “uneventful” and does not mention the large incision.

It takes me a few days to realise what has happened: by the time of the surgery, my last ultrasound was almost a year and a half old. In the meantime my fibroids continued to grow. And then during the surgery the doctors were “surprised” by finding very large fibroids.

Apart from telling me that I have dissolvable stitches, no one gives me any information about aftercare. When I decide to change the dressings after a few days — I have no idea when I was supposed to change them and just bought random dressings on the internet — I realise that my large incision is held together with steri strips. I do not know how long they are supposed to stay on and fall down the very deep rabbit hole of googling “how to care for my c-section incision”, since this is the same type of wound I have. There is a whole world of massages and incredibly expensive special scar reducing plasters.

After a few weeks, when my various incisions have healed and the practice nurse at my GP has cut off several centimetres of the supposedly dissolvable stitches, which were poking out of me, I try to put on normal trousers again. But despite having lost weight since the surgery I cannot close the button on any of my jeans. Google informs me that “swelly belly” is a normal side effect experienced by many patients after an open hysterectomy and that it can take several months for the swelling to go down. I spend some more money, this time on maternity pants.

I am 34. Because I have spent the last five years constantly thinking and worrying about my period, I have hoarded enough tampons to last someone else from first period to menopause. Like forgotten Easter eggs I continue to find them in every backpack, jacket pocket, drawer, cabinet. A reminder of just how much my periods have ruled my life until now.