Endometriosis UK
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Frozen pelvis, stage 4 endo, and work!

Hi everyone, I was diagnosed with Stage 4 endometriosis about 4 1/2 years ago and had my latest surgery approx 7 weeks ago. I received my post-op letter today which stated there was a frozen pelvis, bilateral endometriomas, a recto vaginal nodule and endometriosis in both utero sacral ligaments. Once you have been diagnosed with a frozen pelvis, do you always have it or does surgery cure it? What symptoms can you typically expect with a frozen pelvis and in what ways do you find it effects your everday life? I found I was in immense pain for months, affecting the back, bowel, hips, legs, bladder, etc. Trying to walk the relatively short distance to work is like trying to wade my way through thick treacle! I also get extremely chronically fatigued.

The other item in my post today was a letter about what was discussed at the Stage 2 level of sickness absence at work meeting that I had to go to this week, basically saying that my job is at risk if I don't attend work more regularly. Unfortunately, I've had two operations in two years for endometriosis which has meant around 4 - 5 weeks off work each time. I also had one operation that was cancelled which they've also included as sick time off which seems unfair to me. There have also been some other intermittent periods of 1-2 days sickness. I fully appreciate that they have to follow policy, but the HR lady really offended me when she said 'I'm not saying your illness isn't genuine...' I really wanted to have a go at her, but I thought better of it. I actually think that myself (and all you other wonderful ladies who drag yourselves into work when you feel extremely unwell) should be applauded for what we put up with instead of trying to prove to ignorant people that we have a serious and debilitating illness. When I saw the Occupational Health doctor several years ago following surgery, he told me I was too unwell to work and said I should research my eligibility for benefits. However, I told him I was too anxious to quit work as I was worried that I would not be eligible for benefits and end up bankrupt (my husband and I walk a fine tightrope each month financially anyway due to the cost of living today); so I continued working. I think I may have to consider dropping my hours at work again or even giving up work altogether. I would like to look into my eligibility for benefits - how do I go about this? What would I be eligible for?

Thank you for listening, everyone. :)

1 Reply

hi. How are you doing? Noticed your post from a while back today whilst I was looking for things about frozen pelvis. Did you get any answers? I had a lap on Wednesday afternoon and was told I have grade 4, infiltrated endometriosis, cysts and full frozen pelvis. They didn't go in to much detail as I wasn't well after the op and my husband wasn't there and he wants to explain it thoroughly to us both so I've been looking into but not finding a vast amount about it.

I hope your pain is being managed.

take care 😊 xx


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