Sunday, 1 February 2015

Terrified to ask for medical help because of nebulous reality

Last Friday I had to call in sick at work, because I could barely get out of bed, with my lower back, lower abdomen, sides and hips all competing for the honour of hurting the most. This wasn't the first time, either, that I had to call in sick for the same reason either. Despite trying to ignore the pain and manage it at work with painkillers when necessary, I still have to call in sick on average I would say about once every one or two months. Last December, during my Christmas break, I decided to try to find some medical help for this monthly reoccurring issue, starting with a GP visit, which I wrote about before.

My GP advised me after finding nothing out of the order with a quick ultrasound of the abdomen to make an appointment with my gynaecologist and see what he could suggest in terms of examinations. This is where things get kinda sketchy for me, mostly because of the many and wildly differing interpretations of my abdominal physiology.

The first time I met with my gynaecologist it was to get acquainted and to discuss my current hormone therapy, also in relation to the monthly pains I was having. He was quite intrigued by my story, as I am probably the first intersex woman he has ever had as a patient. Also part of this appointment was a simple blood test for which some blood got drawn, and me handing over copies of my medical file and MRI scans. I got the estradiol part of my hormone therapy switched from an oral medication to a gel-based, transdermal form, as this was healthier.

That was all fine, I guess. The second and so far last appointment was scheduled because of the severe monthly pains I was having early last year. The gynaecologist performed an ultrasound (internal) to see whether he could find any clues. That examination was in many ways humiliating as it involved (yet again) having to undress for a doctor and in a sense being violated, even though I knew it was for a good cause. Yet the worst was to then have the gynaecologist not find anything and me imagining that I could feel the doubt about my story creep into his voice. Was I telling the truth when I told him that I am intersex and a hermaphrodite? Do I truly have a monthly cycle or have I just been suffering from this extreme psychosomatic pain that I have been projecting on my body since I was eleven years old?

Since that time I also had the surgeon who was supposed to perform surgery on my female side go silent after planning the surgery date, and the disappointing and abrupt report and communication cut-off with the hospital in Tübingen regarding the MRI scan I had there, coincidentally after they had been in contact with a Dutch physician who most definitely knows me, as the last time I saw him was at the medical disciplinary commission hearing in Amsterdam, two years ago. My gynaecologist most likely knows about all of this and the fear I thus harbour is that he'll trust my story even less.

Considering how little I trust said story myself and feel like I understand anything about this body of mine works, that makes the step to make an appointment and face this gynaecologist again more than just daunting. I'm terrified to be rejected by him, as so many physicians have rejected me in the past, and feel that I'm being punished for not having the right answers about my own body.

Meanwhile the current monthly cycle started for me over a week ago, with the usual sharp pains for a day, then about a week nothing and then the lower abdominal and back/hip pain. Even though it's a lot less severe now that I am back on the pill (thanks to my GP), the symptoms are still severe. It also feels as though my body is still processing whatever happened during the couple of months that I wasn't taking the pill and had days of such intense abdominal pain that upon returning home from work I could only throw myself on my bed and cry for a while from the pain.

One very characteristic part of it all is the discomfort and severe pain in the area where the vagina would be located. For 1-2 weeks I'll have the feeling of discomfort with some days (especially when not taking the pill) of the area being completely inflamed and swollen, with any form of touch on the skin or any bowel movement being sheer agony. It all fits the usual menstruation pain symptoms, though with any vagina blocked off no way for any fluids to exit, thus possibly causing severe irritation and inflammation. I'm not sure that's what's happening, but it sure feels that way.

One possibility which I hope is not the case is that of endometriosis, which is the presence of uterus lining tissue outside of the uterus. This generally involves severe, untreatable (chronic) pain. One major characteristic of this condition is that it turns any menstruation cycle into a roughly 3 week continuation of agony, as the body struggles to deal with this rogue tissue shedding discarded tissue in parts of the abdomen which never evolved to deal with this. As I'm not sure at this point whether or not I a) have a usable vagina which b) plays a role in all of this, or c) where this uterus tissue might be located since d) I likely don't have a uterus or similar.

And of course e) whether I'm just imagining this pain and feeling the sudden cramping in the abdomen, my hips hurting like hell for a day straight or my lower back feeling like I went completely through it, etc. etc. is all just in my head. Because I want attention, or I'm a lying bastard without realizing it and just seeking validation.

I really wish I could get the answer to (a), as it'd help with getting (b) and (c) answered. It's proven to be almost impossible to get any clear answer on this, with Dutch doctors outright denying that I have any signs of female genitals, German doctors agreeing that I have at least a form of intersex if not outright hermaphroditism, but the latter still refusing to take it further using more extensive examinations, exploratory or reconstructive surgery.

So in the end I'm still left facing the inevitability of making that gynaecologist appointment, informing him of my findings and hope that he a) still believes me, b) still wants to help me, and c) knows of any useful examinations which he can arrange.

God, I hate being intersex so much...



Patrick Horgan said...

Sorry it is so hard. (((hugs)))

Filippo Salustri said...

Our thoughts and hopes are with you.