Timeline of a chronic pain diagnosis

How a UTI turned into a decade of chronic pain

My ex had a lot of flaws, but one of the things I will always owe him for was his ability to serve as my memory. During the course of my journey to discover the source of my pain, I was put on a wide variety of medications. Between the fatigue caused by my pain, the depression that accompanied it, and the side effects of my various medications, I have forgotten large parts of my university life. I struggle to attach my memories to a mental time scale; an event could have happened last month or last year, and I may not be able to tell you which.

To help me keep track of my treatment and timescales, my ex sat down one evening and wrote it all down for me. When advocating for your own health, especially when you’re dealing with fatigue and brain fog, it’s important to have everything written down. It makes your testimony more reliable, and doctors are more likely to take you seriously.

For best results, take an older man to your appointment and have him lead the discussion. He could simply repeat your statement word for word but it has more weight coming from him. More about this later.

This timeline only covers the first 5 years, before I received my final, accurate diagnosis. By this point, my ex was much less involved as my advocate, for reasons which in retrospect are obvious.

DateEventDiagnosisTreatmentOutcome
Jan ’09Blood in urine, pain passing urineUTIAntibiotics – AmoxycillinUTI passed, pain remained
Feb ’09Discomfort during intercourseThrushCanestan external creamNo change
Mar ’09Discomfort now severe pain. No intercourse since Feb. Unable to wear tight clothes / trousersThrushCanestanNo change
Sept ’09Repeat as above 3 more times.Thrush!Canestan x 2, fluconazoleGP will not refer further, self refer to GUM
Oct ’09Pain now interfering with daily life. Trouble exercising, walking. Depression. Visit GUM clinic twiceNo STINoneReferred for Psychosexual counselling
Apr ’10VaginismusPsychosexual counsellingNo change
Mar ’10Back to GPVaginismus / VulvodyniaAmitriptyline 10mg, rising to 100mg over 10 monthsPain allievated to a small degree, cognitive function impaired at higher dose
Dec ’10GP refers back to counsellingNoneNo change
Dec ’10Refer self to private Dr for 2nd opinionVulvodynia + VaginismusAdvised to increase AmitriptylineNo change
Jan ’11Back to GPAs aboveSwitch to Gabapentin 25mg, increase to 75mg over 5 months No change
Jun ’11GPAs aboveFluoxetine 25mg No change
Sep ’11GPDuloxetine 40mgReferred to chronic pain clinic
Nov ’11Visit chronic pain clinicSuspect pain is now at least partly neuropathic Referred for CBT therapy to manage pain No change
Feb ’12GPAs aboveWithdrawn from medicationMinor pain relief not worth side effects
Feb ’13CBT referral still not come through, visit GPTopiramate 150mgReferred to Gynaecologist
Apr ’13Friend with neuropathic pain recommends Lidocaine. Lidocaine 5%Minor topical relief!

By searching through my own Facebook status’, I am able to fill in a little more detail:

DateEventDiagnosisTreatmentOutcome
Sept ’14Still waiting on CBT referral
Sept ’15Finally receive CBT referral6 week course of CBT Can’t offer anything further
Jan ’15Referred to Gynaecologist, dermatologist in attendanceLichen PlanusSteroid cream and lidocaineSignificant reduction in pain over 24 months as Lichen Planus finally goes into remission. Still can’t have penetrative sex.
Jan ’18Boyfriend of 9 years has affair, end of toxic relationshipFinally pain-free within 6 months. Full sexual function returned.

Chronic pain impacted every aspect of my life. On a practical level it dictacted what I could do and even what I could wear – tights, trousers and sexy underwear were all out, because they caused too much discomfort. Mentally, it drained my energy and affected my self esteem. It’s hard to feel sexy or sexual at all when you’re wearing your boyfriend’s boxer shorts, and the IBS that turned up with your autoimmude disease has made your stomach bloat like a beachball.

The specialists that I spoke to kept telling me that there were “other things” besides penetrative sex that I could do to maintain intimacy with my parter, but between my self-loathing and my boyfriend’s inability to be satisfied with anything less than full sex, all attempts we made at alternative intimacy were a disaster. Anything short of full sex just left him feeling frustrated and short changed, and I got so consumed by the need to ‘make it up to him’ for being unable to have “proper” sex that any pleasure was stripped away from me. Sexual intimacy of any kind became a chore, to the point where I could hardly bear for him to touch me at all. Any kind of touch had become associated in my mind with pressure for sex, frustration and guilt. Yet at the same time I was desperate for consolation and reassurance. I needed to be held and comforted more than ever, but it felt like a bottomless gulf lay between us.

Denied physical comfort, I drew into myself, becoming angry and bitter. My resentment – towards him for not fulfiling my needs, towards myself for not being able to articulate my needs- bubbled at a low simmer at all times. Mine was a very angry depression; I hated my body more than ever because it was ‘broken’. That’s how I felt: broken. Something fundamental about me just didn’t work, and it undermined my whole life. But the more I complained about my body, the more it pushed away both of my partners. As my girlfriend explained, “It’s hard to be sexual with you when you just keep saying that you’re fat and ugly.”

I had two partners – a man and a woman. It’s the cliche bisexual dream, but the reality was that I was incredibly lonely. Twice the number of partners isn’t twice the work of a usual relationship, it’s at least three times the work. Three partners means three relationships to manage, and besides the practical challenges it requires an awful lot of emotional labour. The hope had been that a relationship with another woman would fill in the missing pieces from the relationship with my boyfriend, but I just ended up feeling unfulfilled in two different relationships.

Maybe the problem was that I was looking to others for a sense of self worth. Maybe I needed to find that validation in myself the whole time. But I think it’s natural to look to the people we love for reassurance and validation. Unfortunately, both my relationships just reinforced the understanding that I didn’t measure up, albeit in different ways. For him, the sexual dysfunction was an insurmountable obstacle that undermined all intimacy between us. For her, I was too emotionally needy, and although sex was easier between us she preffered his company to mine in the bedroom. I was usually welcome as a third party during their encounters, but it was always unsatisfying for me. I was a sex toy at best, and since pain changed the way that I related to my body even I didn’t know how to pleasure myself any more. It was just another source of frustration for me; you’d think threesomes would at least have helped me feel included, but I just felt like an intruder. Eventually it became too much for me to bear and I stopped getting involved at all. After that, every time I walked in on them being intimate was like a punch in the gut.

Every aspect of that relationship was toxic, but I had become so convinced that all of the problems were my fault that I didn’t dare leave. The brief moments of happiness that I had in that relationship were all that kept me getting up in the morning. The idea of facing a life time of chronic pain alone, without even those moments of happiness, was so awful that I felt like I had to stay. I was sure that I loved both of these people, and I thought that they loved me back. Even though so much of my life was stressful, frustrating, and even hurtful, I still didn’t want to walk away.

It was only when my boyfriend started treating our girlfriend to the same gaslighting bullshit he’d been using on me that I was finally able to see his manipulative behaviour for what it was.

It has to be telling that, within 6 months of escaping a toxic relationship, I was finally pain-free for the first time in a decade. Actually, the pain lasted almost exactly as long as the relationship did, beginning 3 – 6 months in and finally fading away 3 – 6 months after. Maybe the two things aren’t related – causality and correlation are not the same after all – but I find it an unlikely coincidence. There was so much guilt and pressure in that relationship, so much stress, that it feels like it must have impacted on my pain.

I wish I’d kept more notes during that period. I do have diaries, but my entries were always sporadic and I threw away at least one in a fit of minimalism, deciding at the time that I didn’t need reminders of such a painful part of my life.

It still doesn’t feel real to me that this period of my life is over. I still worry that the pain will come back as suddenly as it left, but I try not to dwell on it. Instead, I’ve resolved to make the most of my pain-free body while I have it. In a very real sense, it feels like I have a lot of wasted time to catch up on.

Published by QuirkyCnt

I've spent 10 years living with chronic pelvic pain. Vulvodynia, vestibulodynia, vaginismus - I've got the set. I've even got lichen planus, which is an autoimmune disorder, and adenomyosis. This blog documents my experience with chronic pain, sexual dysfunction and all the ways I've tried to manage it. Expect fetish clubs, polygamy and explicit conversations about sex and sexuality.

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