Endo & adeno 2: a hidden cost

I’m not pregnant again. And I’m crook, endo and adeno are knocking me around. We’re still moving house, and Rose has hit major unexpected issues with her job, so we’ve spent the afternoon at Centrelink starting the process for unemployment support in case it doesn’t get sorted out. It’s been a really tough couple of days. If you don’t know what endo and adeno are, see Endometriosis & adenomyosis 1. Trying to get pregnant with these is rough, it’s an extra kick in the teeth each month on top of the sad news we’re not pregnant. Right now I’m pretty fed up.

My experience with these conditions has always been pretty horrific. My first period was at 13 and pretty normal. My second happened to fall in a week that I was away with my school for a major convention. I packed a collection of sanitary items and my two school uniforms, completely unprepared for the pain and haemorrhaging I was about to experience. All my pocket money was spent on buying extra pads from the toilet vending machine. I was drenching to capacity a super heavy size pad every hour. I have a vivid memory of sitting by my window on the fourth floor in the small hours of the night, sobbing, my mattress stacked against one wall to dry after I’d tried to sponge it clean, and the floor between the shower and my bedroom wiped down with wads of toilet paper. I felt in that moment that I was the loneliest person in the world.

My periods were always extremely heavy, particularly in the first few days. I struggled to cope. Embarrassing leaks, constantly going to the toilet, and stains on clothes, bedding, and mattresses were suddenly a constant part of my world. Teachers were often suspicious that I was merely trying to get out class and it wasn’t uncommon to have desperate requests to go to the toilet denied. I carried 15 or more pads with me at all times, just in case. Bullies thought it was amusing to steal these or scatter them around the classroom. In later years, homeless or living alone, they were needed in case I was too sick or broke to buy more in that first miserable week.

The pain was severe and nothing provided much relief. My journals from this time are full of distraught descriptions of feeling that my pelvic bones had been turned to hot lead that was burning in my flesh and running down into my thigh bones, that something was raking a sharp stick across the inside of my rib cage, of intense cramps and contractions that exhausted me. I would spend days huddled around hot water bottles, alone in bed, sobbing, or curled around my gut in the bath, or weeping in the toilets at school or work, learning to dissociate to carry on.

My periods also lasted for much longer than usual, around 14 days a month. Literally half my life was now spent bleeding. I experienced a level of body dysphoria usually described by trans teens enduring puberty as the gender they do not identify with. I felt deeply ashamed of my inability to handle menstruation, unable to connect with, care for, or enjoy my developing body.

The worst of all this was that it was happening in a context that normalised it all. I was seen as a bit of a drama queen. Doctors offered neither information nor sympathy. The chronic pain was made a joke of as a rite of passage I had to learn to cope with better. I was an embarrassment to others when I failed to manage discretely. A conservative school and home environment exposed me to constant shaming with inadequate provisions in the way of bins, extra sanitary supplies, or discrete options to clean accidents or hide stains. Menstruation was not to be mentioned as I had a younger brother who was being kept ‘innocent’. Basic supplies such as bins or pads were not kept in the toilet or bathroom at home, despite actually begging for them. As soon as I had a home of my own, I was proud to put both in the bathroom – a woman lives in this house and her needs are not something to be ashamed of!

Unlike other experiences of illness such as the flu, I was not offered much nursing care or emotional support when my pain was related to ‘private matters’. I have the distinct memory of weeping in the toilets at my part time job in child care at 17, dizzy, weak, and in awful pain, but gathering myself to limp back into work, bitterly confused that other girls didn’t seem to find this so hard. Constant invalidation and cultural embarrassment about gynaecological issues meant that endo and adeno isolated me. Deep loneliness, shame, and pain intertwined and each made the whole experience far worse, contributing to self hate, food & body issues, and chronic suicidal feelings.

Painful periods just don’t sound that bad, and that was a huge part of the problem. It wasn’t seen as serious, but this issue alone was enough to cause serious harm to me. At times when pain interrupted sleep and guilt and confusion about puberty and sexual development added to my distress, the beginnings of psychosis can be seen. Nightmares intruded into my blood drenched reality in profoundly disturbing ways. I dreamed of rape, miscarriage, and abortion, of having demons inside me, of clawing babies from my own womb. Waking soaked in blood and knotted with pain blurred nightmare and reality. My usual teariness began to deepen each month into suicidal blackness. I still struggle with profound lows which are partly hormonal and partly basically emotional flashbacks to these awful experiences. I began to believe awful reasons I was suffering, such as punishment for sins, my body hating me, me being evil. People around me treated me as if I was bipolar.

These are the kind of experiences that come to mind when people talk about how mental illnesses would be better treated of they were more visible.

Really?? Ever had facial scars and had to handle the stares before, or needed to use a wheelchair and watched people pull kids away from you as if you’re going to run them over, or, you know, discovered you have blood on the back of your pants and had to walk through the whole shopping centre to get back your your car? Oh, I see, you mean visible, but in a nice, non threatening way that didn’t make people stare, laugh, or treat you weirdly. Good luck with that.

These are horrible, miserable conditions, for many people they cost us deeply. We battle with chronic pain and anaemia, doctors who don’t get it, difficulty accessing treatments, troubles getting support from family and employers, difficulties with our sex life, and fertility challenges. It should be okay to talk about it, easier to get help, and less embarrassing to have to explain regular illness. I shouldn’t have to push back against everyone telling me I’m clearly doing too much when these things knock me out for a week – they’ve little to do with how hard I work or whether I’m taking good care of myself. They definitely shouldn’t be a secret shame that messes up our relationships, mental health, and our lives.

Endometriosis & adenomyosis 1

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.

Imperfect bodies

It’s been a wobbly week, health limping along on training wheels. Yesterday was great, today is awful. I have endometriosis, which for me means very painful and heavy periods. Endometriosis is a condition where the tissue that lines the womb (the stuff that pumps up, ready to support a foetus if you get pregnant, and then every months sheds as a period)  grows elsewhere in the body, often through the digestive system, latching onto organs and tendons like weeds growing where they shouldn’t. This ‘weed’ reacts to normal monthly cycles the same, shedding and bleeding into the pelvic cavity where it can’t escape. This can make a mess of scar tissue and adhesions, and can cause awful pain if there’s nerves around those areas. Not everyone gets pain, it depends on where it happens. It can also destroy fertility.

I’ve managed for the last 10 years by taking a medium dose of the oc pill, on a continuous basis, that is, not taking the sugar pills except for three short breaks a year. That means only three periods a year, only a week long, and not severe pain. Before I was diagnosed and started treatment, my usual period lasted about 14 days a month, involved extremely heavy bleeding, and severe pain with at least three days in bed. I have vivid memories of trying to work at childcare and manage my periods, weeping with pain in the bathroom. I wasn’t diagnosed until I was almost 20, thanks to a male family doctor, an uptight religious community that treated normal functions as secret and shameful, and myths about what was normal. I’m angry as all hell about this, I suffered a lot as a teenager and was mostly treated as weak and lazy by people who didn’t know better.

Rose and I are now in pre conception care, gearing up towards pregnancy possibly next year. This January I stopped taking the pill so my normal cycle is back. The great news is that all the signs are good that the endometriosis has been contained and even reduced over the years, so my fertility should be intact. The difficulty for me is that I can no longer schedule my cycle around work and other commitments. It’s also frustrating because our cultural taboos against talking about this stuff mean that whenever I’m ‘just sick’ again I tend to come in for a lot of advice about not over doing it and tut tutting about needing to manage my health better. The truth is that none of that would help. What does help (me) is sleep, forms of pain relief that reduce muscle spasms, such as Naproxen Sodium, or orgasms, heat in the form of hot showers, baths, or wheat packs, and avoiding cold foods such as ice cream. My mood is usually very low and I find that I’m often teary and depressed. One or two days stuck at home very quickly leave me feeling lonely and miserable. When I’ve been under a lot of intense stress as a young person, I’ve had an almost psychotic response to the loneliness, secrecy, and pain of these experiences, such as nightmares that the pain was a demon clawing me apart from inside.

It shouldn’t be a big deal to talk about it. Many people have difficulties around menstruation, fertility, sex, digestion, and all the areas of health that we don’t talk about. It’s harder to get funding for cancer research for less sexy cancers. It’s harder to explain health problems like these to friends and employers. There’s a kind of bemused and patronising tone taken to people who ‘fail’ to live up to our expectations that adults can manage digestion, menstruation, and sexual health without anyone else ever knowing about it. Many of us are struggling with issues like these! I’ve seen women in such intense pain with endometriosis, they wind up begging for morphine in emergency rooms, and have to carry a letter certifying their condition so they are not mistaken for drug addicts. I can tell you these women are not just lazy or making a big deal about something everyone has to deal with! I’ve talked with women who have suffered through a long, painful struggle to get pregnant, too sick to work, and too embarrassed that something as ‘minor’ as menstruation causes them such distress to tell anyone but their closest friends about what’s going on.

These things are not that unusual. Embarrassment about them helps noone, especially not young people who are so particularly sensitive to shame and isolation. Every day, people are managing infertility, chronic digestive problems, recurring thrush, uti’s, and other infections, immune issues, and allergies to toilet paper, latex, lube, sanitary items, and their own skin and secretions. All of us are trying to find ways to manage with some sense of dignity, to still feel attractive when we dress up for a date, even if that means making 15 minute stops to pee, finding an outfit that conceals a colonoscopy bag, or trying to discretely manage menstruation while using the men’s bathroom as a f2m transperson.

Human bodies can be fragile, and leave us very vulnerable to shame. I generally don’t talk about my physical health challenges, mostly because I don’t want to make other people uncomfortable. I’m an activist when it comes to mental health but still very influenced by ideas that I shouldn’t embarrass anyone else, and shouldn’t complain about physical health problems. I’m feeling a bit fed up about those ideas. Shame is for people who have done something to feel bad about. I just happen to inhabit a body that is lovely and fragile, and that has issues in some areas like menstruation that we don’t, as a culture, like to acknowledge. I know I’m not alone and I’m tired of feeling alone. I’m not any less of a person, I have nothing to feel ashamed about. Being sexy and adult isn’t, in my opinion, about being able to maintain mystery about our bodies. There’s a humility about inhabiting a body that doesn’t work perfectly, intimacy about being forced to acknowledge our shared vulnerability as people, at having our lovers or house mates understand these needs and at times care for us. No one is healthy all the time. As much as people might like to pretend otherwise, whether as children, in our age, or due to sickness or disability, we all at times will need help and support with intimate functions and for issues we find confronting and embarrassing. All of us will love people who have these experiences and struggle with feelings of shame, ugliness, and degradation. We can let this isolate us, or we can rise above it and embrace the tenderness and humour of having imperfect bodies.

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