Endometriosis and Bladder Incontinence

In 2012, I had something really embarrassing happen. I had recently been hospitalized with my first big endometriosis flare up. The flare had been steadily increasing over the previous few weeks and the stress of work had finally culminated in what was to be the end of my career due to my health.

Shortly after this flare up, I started to lose the control of my bladder. My first experience of this was perfectly timed with a work meeting and, although (luckily) nobody suspected, I had wet myself. “Where had this come from”!? I was mortified and for a while I kept it a secret.

A GP had told me that my pelvic floor muscles were strong, but the wetting was happening all the more. I decided to practice these exercises regularly, but they didn’t seem to help it. It was like the flare had caused a complete lack of control in that area of my body.

When it continued, I decided to speak to my endometriosis consultant and he explained that having endometriosis on your bladder could cause this. At my next surgery, bladder endometriosis was confirmed.

Bladder problems weren’t a new thing to me. I had long suffered with constant bladder infections. I dreaded going to the toilet because urinating caused such sharp pains. This pain only increased during the night times, when I hadn’t been to the toilet for a while. It felt like a balloon filled with water attached to bits of string that would pull on both ends.

It hurt. A lot.

I was thankful that I had some relief from the bladder problems while I was pregnant. This was probably due to baby pushing on my bladder, as I was having to go to the toilet constantly - particularly towards the end of the pregnancy!

Unfortunately, the bladder problems only worsened post-pregnancy and, since my hysterectomy in 2019, I have had an increase in bladder irritation. My consultant said I should feel relief from this around 6-8 months post-surgery, but sadly, it’s still happening now, over 18 months on.

The pain I feel 9 out of 10 times I go to the toilet is horrible. The pain begins as soon as I feel the need to go and it feels like it is tearing me apart. I also experience problems emptying my bladder. Sometimes a tiny uncontrollable trickle will come out. Then a few minutes later I’ll be desperate to go again and my bladder will empty (what feels like) completely.

There is no rhyme or reason with my bladder issues. I try to pre-empt it by going to the toilet as often as possible. But I am now at the point where I simply have to wear a pad everyday, and some days will involve a change of clothes too.

It's simply my norm.

I don’t find it as embarrassing nowadays. It’s just one of those things I’ve had to become accustomed to. Which is sad really, because at the age of 36, this shouldn’t be something that I should have to live with.