For years, endometriosis survivor Elizabeth McCafferty has lived with chronic pain. But one random Instagram DM changed that, as she recalls…
For years, I’ve had to deal with the chronic effects of endometriosis. Whether it’s the countless hours spent on the floor in agony and unable to move, trips to A&E because of recurring UTIs or relationships failing due to high anxiety surrounding inevitably painful intercourse, endometriosis has been a constant, life-halting issue.
Since 2018, I’ve had four surgeries to try and alleviate the most problematic symptoms, with most of the endometriosis itself being found on my bladder.
Agonisingly sharp pain would pulsate through my bladder and pelvic area. It would burn when I went to the toilet and continue to do so for up to an hour afterwards. Sometimes, I’d feel a deep, uncomfortable fluttering sensation; as if someone who had pins in their hands were squeezing my bladder very quickly. The only real trigger I could find was sex or stress: no matter what I did, it was inevitable that I’d have a UTI afterwards. I’d spend endless hours googling ‘can stress give me a UTI’, ‘will I have sex again’ – (tearfully) preparing for a life of celibacy.
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Eventually I was referred to a urologist who suspected I either had recurrent chronic UTIs orinterstitial cystitis (a condition where the lining of the bladder becomes inflamed causing the same symptoms as a UTI). The main difference between the two is that the latter is inflammation, not an infection. It’s very common in endometriosis, especially if you’ve had a lot of operations on the bladder; scar tissue can amplify sensitivity and irritation.
I began to keep a diary of foods that triggered pain: coffee, spicy foods and fruit juices, (especially orange and grapefruit) could cause almost immediate flares, so I cut them out instantly. But sex was still an issue, and so my GP suggested that I probably had both chronic UTIs and interstitial cystitis.
But that’s where my story changed track.
Visiting a pelvic physio finally gave me answers
I was prescribed a combination of the nerve pain blocker amitriptyline and an antibiotic to be taken after sex to prevent infection. The good news is that I’ve never had a UTI since. But the deep pelvic pains were still niggling away at me, and they persisted in spite of medication.
In need of a cathartic release, I took to Instagram to write a post about my endometriosis journey, and very shortly after, I received a DM from a fellow survivor asking if I’d ever tried pelvic physiotherapy. We chatted briefly about our experiences and after a little searching, I found physio Annabelle Fish.
During my first session with Fish, we spoke at length about my medication and history. I then signed a consent form for an internal examination. This meant placing a gloved, lubricated finger inside my vagina to assess the ways in which the muscles were able to tense and relax. It quickly became apparent that my pelvic floor was too tight. That might not sound like a bad thing, but it can cause strain on the muscles around the bladder.
Fish explained how pain can be influenced by many factors including stress, previous experiences of pain, hormones, health beliefs, sleep and diet. That came as something of a surprise because, like many other women, I’ve only really heard of pelvic floors being too slack, especially after childbirth. Surely that’s what things like pilates are for – tightening up and activating the pelvic muscles?
But Fish went on to tell me how quite often, there will be an initial ‘insult’ (in my case recurring UTIs and surgery) that makes one area of the floor tighten up. If that becomes chronic, then the surrounding tissues will also become tense and sensitive, which is what really starts to make everyday activities so painful.
Using a little pressure to relax the muscles internally, Fish explained that she could feel the muscle spasming because of how tight it was. Finally, I had answers for why I’d spent so many years in pain.
Pelvic physiotherapy, Fish explained, would involve “down-training the pelvic floor” with an exercise programme (to make it less tight), focusing on relaxation (and contraction) of the muscles. She went on to say that her main aim “is to gently guide women towards their ‘happy place’, which may be creative writing, painting, listening to music or talking to a friend – all the things that will help calm their nervous systems and reduce pain”.
Finally getting answers for endometriosis has been a huge relief
Since that session, I’ve been able to realise that my stress isn’t just a product of my condition, but that my endometriosis flares are linked to stress. We talked in depth about exercises that can be done to relax the pelvic floor, like squatting, happy baby or child’s pose yoga stretches. I’ve since joined a yoga class.
In a bid to reduce stress, I’ve even made a self-care kit packed with a TENS machine, UTI dip-testing kit, medication and sanitary towel ice packs (great for painful bladder episodes) just in case I get a flare-up. My biggest fear used to be the seeming randomness of flares, so having that kit ready to use if and when it happens has reduced a lot of the anxiety.
Pelvic physio can be life changing
I’ve stuck strictly to not drinking coffee, fruit juice or eating spicy foods, alongside having regular pelvic physio. It’s now been almost 10 months since I’ve had a UTI and sex has become less painful (both things that at one stage I thought I’d never be able to say). I’m even proud to announce that through regular pelvic physio, maintaining my diet and practising mindfulness, I’ve been able to come off amitriptyline altogether. There’s no denying that the antibiotic after sex is working too, but I really do believe that taking control of these smaller elements has enabled me to both mentally and physically better deal with my health.
Sadly, I’ve not been able to find my fellow endo-warrior to thank them for suggesting the physio. But it’s safe to say her message containing that golden nugget of advice catapulted me on my journey towards healing. Go on, check your DMs – you never know when they might change your life.
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