So that consultant appointment came around, and I’m more confused than I was to begin with but doubly happy that I pushed my GP for a proper referral as, once again, everything that prick has been suggesting was confirmed as bullshit that wont help me.
To cut a potentially long story short, I have been told that I have adenomyosis- a disease where endometrial tissue grows into the middle layer of the womb, instead of just out into the normal layer where it sheds to give you a period. This makes the uterus bulky and leads to excessive bleeding, pelvic pain and bowel and bladder complications. It is progressive, it is there all the time and it is not a ‘bad period’. You can cure adenomyosis- with a nice simple hysterectomy. Fuck.
Adeno is similar to, and often found alongside, endometriosis (which they also believe I have but are less concerned about), but is a medically distinct thing. They don’t really know what causes it, but there is some general agreement that it is an autoimmune issue and is probably congenital, as in present from birth. A womb fuck up that starts in the womb, like those cruddy hall of mirrors illusions. It isn’t inherited. It might be triggered by injury. It is not going anywhere once it is there.
Adenomyosis makes for a slowly expanding, bulky uterus which can put pressure on the organs around it, taking responsibility for my frequent bowel irritation problems, bloating and bladder issues. I’m also blessed with a heart shaped uterus- sort of a thick division growing in from the top which increases the surface area inside the uterus and makes for complications in periods and conception. It also makes for a nice connection to my favourite Nirvana song……The long suffering organ is also on the wonk, which isn’t a massive issue until one needs smear test and has to dig around a bit to find the cervix. This is about as comfortable as it sounds. Hooray.
Now we fall into the realms of various, side-effect riddled hormone treatments which may or may not manage my symptoms whilst also potentially making me bleed, cry and hate the world continuously. Fucking. Brilliant. I can take tablets, which put an additional strain on my liver and already suffering stomach. I can have an injection which is likely to make me pile on weight and is irreversible once administered. I can have an implant to deliver drugs directly into the cruddy tissue at question. This hurts like hell and is exactly what it sounds like- a progestin soaked lump of plastic straight up the nunny.
For fucks sake!!!!
I don’t have to do anything. Actually, I do have to go on a diet because all of these treatments are likely to make me put weight on and as it stands I could do with dropping 10 kilos anyway. I might not do anything else. A hysterectomy is not on the cards as I am in early stages of adeno thanks to all those years on the pill and also I don’t want one. It does seem like I put up with the hormone treatment or I shut up and go on with the pain, fatigue and constant gastro symptoms. I have to say I wasn’t the happiest camper in town waiting to see a sadistic phlebotomist for the inevitable blood counts and liver function checks.
It’s really confusing. Because this whole thing seems to be tied in with having misfiring hormones, and they want me to take more hormones??? How is that going to help? I’m not a doctor, and they seem to think it will help, but I really don’t want to be fat and angry with a load of plastic up my bits.
I am also not entirely sure how it is that the consultant decided to shelve the full endometriosis diagnosis now because there is visible adeno- although the treatment options are similar. Will treating A lead to relief on E too? He seems to think so. Take the pills, avoid the laparoscopy, think about the coil, come back in 6 months.
I did some whinging and shaking after the appointment, aided by the increasingly hostile pain flare up that came from an internal examination which the gyne classed as ‘unremarkable’. Rude!!! Turns out that even if your lady garden isn’t immediately painful, jigging it about the place in the name of medical diagnostics can lead to all sorts of soreness later in the day.
Then I went away for a week and tried not to think about it. Now I’m back and I still don’t know what to do.
God I hate people like me.
Moan about being sick then refuse to take medicine. But hear me out- I am not debilitated as yet. I’m massively inconvenienced and a bit anaemic. I’m not sure this puts me over the line of wanting to battle with side effects such as weight gain, dizziness, hysterics, facial hair, nausea and acne. And that’s just the short term relief pills.
The consultant was unabashedly enthusiastic about the coil, and openly pissed off with me when I didn’t book in a fitting there and then. My uterus causes me enough grief now, do I really want to go and shove a 5 year dose of plastic coated hormones in there???? Right now, no, I don’t. And not just because of the obvious squeam issue (this is an awake procedure where a nurse just rams it on in there). It is not just because of the possible side effects and ample horror stories available from my broken wombed peers, rather it is about how long one is expected to poke up with said side effects before relief can be found. I’m talking on/off bleeding for months at a time, pain, infection and the craziness again. If I take tablets, I can stop taking them. I can’t take out a coil myself, and the recommendation is to give the coil 6 months to ‘settle in’.
That’s a long fucking time, and I need to function for boring shit like work. I need to sleep and maintain a relationship, see my family, have Christmas and stuff like that. I don’t want to be an intermittently bleeding, brofen-popping hormonal psychopath for the next six months. Or ever, to be honest, especially when my current alternative is still on the manageable end of the scale.
There is also the baby question now heavy in my mind. Every treatment available to me other than pain relief is also contraceptive. I’m at the end of my fertile years. I also have all these jolly deformities which are detrimental to the possibility of carrying a wee-me to term, if we ever managed to make one at all. I’m too tired and sick to consider raising a child at the moment, but all too aware that time is running out. I don’t know if I want to spend the last years of my life where I might make a baby actively preventing this from happening.
I think I’m going to make a cup of tea. Ginger tea. Because I’m cutting down caffeine as part of my anti-inflammatory-hormone-friendly diet. We’ll talk about that another time, I’m depressed enough for now.