Endometriosis and IBS

[Ecclesiastical]

Hello,

I was diagnosed with endometriosis in April after my GP had initially told me I had IBS. I work in pain management and I’m finding it increasingly difficult to carry out my role when I struggle with pain almost daily. I also have a constant feeling of needing to open my bowels or pass urine. Its continuous and has impacted significantly on my day to day life. I cancel most plans. I worry about trying to continue working as life really is so horrible right now. I just wondered if anyone had any helpful advice regarding bowel/bladder discomfort and feeling like you need to go all the time as my GP still isn’t seeing any patients face to face and said they don’t know what to suggest as they don’t know enough about endometriosis.

[Moon_maiden]

I discovered that my need to pass urine very often was down to sitting in a chair, I worked in the office. That was back in 2019, it’s slightly better since hysterectomy but I still get pain sitting. I’m having another op at some point Have you had a lap or just a suspected diagnosis?

Can the consultant where you work offer you decent pain meds? I don’t know if it helps about position when you are working, I ended up using a recliner chair. I can only be sort of comfortable with that or laying down.

Can you take some sick leave for a few weeks just so you can implement things for you that you’d recommend for others?

[Ecclesiastical in reply to Moon_maiden]

Thankyou for the advice, I work in a clinical environment but it is also office based. I always find it’s first thing in the morning or late in the evening that’s the worst with tenesmus, I’ve had 6 months off work unfortunately I’m not sure what to do about work but I’m taking more sick days so I’m a bit worried. I have a formal diagnosis of endometriosis after having surgery in April. I haven’t been given any pain relief or offered anything by the surgeon other than zoladex. My GP won’t prescribe anything without speaking with gynaecologist, they said they would send a letter but that was 6 weeks ago so I just take over the counter solpadeine I also can’t take strong pain relief at work as my job is quite mentally taxing. Feel really lost with what to do at the moment

[Moon_maiden in reply to Ecclesiastical]

Will they do more surgery or do they think they got all the endometriosis first time? Your GP can refer you to the pain clinic at the very least, they can organise things like physio as well as medication.

GP can contact gynae through the system and no way should it have taken so long. Have you chased it up?

There are non opiate pain meds such as Nefopam, it’s not widely prescribed as it’s more expensive than opiates. There’s also Naproxen, it’s an NSAID, an anti inflammatory like ibuprofen. It’s worth trying others as they might not make you drowsy.

It is so not easy, I used to have full time office based and give therapies two or three evenings a week.

I do understand what you’re going through, it not easy

Could you try work part time, your GP can adjust a fit note for you to work x hours, or other allowances, gives you a chance to try and see if that works. Could give you a more balanced life

[635703 in reply to Ecclesiastical]

Why not try ringing the Consultants Secretary and explaining and trying to get some pain management in place.

Explain to your GP you’ve had 6 months sick leave and need pain management.

Explain to both that you need to keep your job. Maybe discuss this with your Line Manager for support around first thing in the morning or at the end of the day. Without knowing more, that’s all I can think of.

Ring Endometriosis helpline but look up opening times first - they might have a fab suggestion as this people are so lovely ☺️

My sincere thoughts are with you as you fight for a way forwards 🤞🏼🏅

Worst case scenario is ring PALS and so no pain management in place - they’re quite good but Drs stick together as you well know 😏

[1giantsleep]

Yes I often feel like I have a bladder infection, esp before my period, I also get urinary retention. No suggestions in that area but probiotics and prebiotics have helped me with bowel problems. There is some evidence to support the effectiveness of probiotics in treating diarrhoea and constipation, although I think if it's a feeling of pressure because of endo in the area it won't help that. Make sure you get from reliable source eg pharmacy or trustworthy retailer, some probiotics can be fake or contain the wrong kind of bacteria.

[Ecclesiastical]

Thankyou all so much for the suggestions it’s just so helpful to hear from like minded people as I feel very alone at the moment. Feels like a constant battle trying to just get through life day to day and for people to listen to you in regard to your health.