Dee’s story

Dee is a queer and disabled feminist who is passionate about inclusivity and equity. Dee is an engagement officer at Fair Treatment for the Women of Wales and has recently been awarded a distinction in her MA in creative writing.  

Dee has been diagnosed with both endometriosis and adenomyosis and found that pelvic physiotherapy had a significant and positive effect, enabling her to manage her symptoms.

Dee and Pelvic Physiotherapy

“I experienced a diagnostic delay of over 20 years before I was diagnosed with both endometriosis and adenomyosis, which also caused me to develop other health issues. Looking back, I thought I was managing my symptoms as best as I could under the circumstances, however, after having pelvic physiotherapy, I realised that there are other things I could do.  

Like many endometriosis/adenomyosis patients, I had bladder and bowel involvement too, which meant that I often experienced lots of pain whilst going to the toilet. Without realising it, I would put off going to the toilet – particularly, going for a wee. The impact this had on my bladder was huge because I had basically trained my bladder to not know when I needed to go. As a result, just before I had my hysterectomy, I experienced bladder incontinence. I would also be feeling like I was bursting to go to the toilet and only a little trickle would happen. The same happened with my bowel – bowel involvement with endo can be incredibly painful and can cause what they call slow transit constipation – I would really struggle to go to the toilet, and sometimes be in the toilet for up to an hour, just trying to go.  

I first accessed pelvic physio on a private basis (not through the NHS). I saw someone mention how beneficial it could be in the FTWW support group which opened my mind to trying it. Previously, I had always thought that pelvic physio was for patients with birth injuries or related to pregnancy and did not realise it would be relevant to me, as an endo/adeno patient who had never been pregnant. Now I see that it really is relevant and how much chronic pelvic pain patients can benefit from it.  

I met with my private physiotherapist via Zoom as this was during the lockdowns (Covid-19). I was very sceptical about this at first as I had no idea how it would work online – but it did, and it was brilliant! We completely retrained my bladder and improved my bowel pain. Some of the at home exercises included keeping a bladder diary and consuming a certain amount of liquid and later measuring my output. I was also taught relaxation and massage techniques as chronic pain can lead to the tightening of pelvic muscles which can cause further problems.    

I accessed pelvic physio a second time through the NHS after the endometriosis nurse in my health board referred me on a more holistic basis, meaning that multiple health concerns were looked at together rather than as separate issues, and referrals were made on this basis. For instance, not only was I referred to pelvic physio, I was also referred to a pain specialist to prescribe adequate pain relief, and a bowel specialist nurse, who ensured I had additional investigations and also prescribed me bowel irrigation kits, which really help me.  

The pelvic physio referral took a matter of weeks and this time, I attended appointments in-person. The appointments were focused on providing exercises and stretches that I could do in my own time and when I was feeling well enough to do them. I use a wheelchair to get around these days so I am sat down a lot and forms of exercise can be really tricky owing to other complications with my health (mainly myalgic encephalomyelitis (ME), arthritis, and fibromyalgia). The physio took this into account and tailored the exercises and stretches to this. For example, I was taught seated exercises and gentle stretches to do when I am standing for short periods of time (like when I’m making a cuppa).  

These experiences of pelvic physiotherapy have contributed to altering the way I view and approach my care for the better. Both physios were incredibly helpful and listened to everything I had to say – respecting what I wanted to – or could do and didn’t want to do. The experiences I had with them empowered me to take more control of my health and helped me in managing my health myself on a more long-term basis by providing me with the tools to do so. For instance, I now notice when I start reverting to not going to the toilet very often, holding it in, and I now know exercises which really help in controlling any pain I may experience.  

When I look back at my health experiences, and at the diagnostic delays I have experienced, it can be very frustrating. So much of what I was experiencing was obvious, particularly bowel endometriosis. I also think it’s a shame that when I began to access pelvic physiotherapy, a lot of damage had already been done to my organs whereas if I had accessed it earlier in my care, it may have acted as a preventative measure (i.e., to prevent central sensitisation and experiencing incontinence).  

Overall, I found that pelvic physio was just as beneficial as surgery in helping to manage my symptoms – in fact, I think it has helped me to maintain my pelvic health to the point that as of yet I haven’t needed further surgery. It’s vitally important that the NHS develops more pelvic pain pathways and ensures endo patients have access to pelvic physiotherapy if they need it – especially if they are on long waiting lists for appointments or surgeries.

There’s a lot more that needs to be done for endometriosis/adenomyosis patients in terms of accessing different aspects of care and trusted health information. It can be very difficult for patients – particularly endometriosis and adenomyosis patients— to identify what symptom management options they should or shouldn’t try in a sea of different information and perspectives. Especially, when this is compounded by negative healthcare experiences which make you feel too exhausted to try anything but the ‘gold standard treatment’ which is excision surgery.  

I hope that more work continues to be undertaken to get more accessible information out there for ALL. On that note, be sure to check out the social model of disability, as it’s information like this that helped me to process the health information already out there, in a more positive and empowered way. It helped me to be kinder to myself which in turn, helped me to seek and try new things to support myself and manage my health.”