Diagnosed after laparoscopy, call for support and how to cope with work?

[Lidv]

Hello everyone,

First of all, thanks for reading and being active on this forum. It’s nerve-racking to write here for the first time. I’ve had a major health struggle the past year, been pushed and thrown around from doctor to hospital, and finally I’ve been diagnosed: endometriosis. My medical history from years back suddenly made sense. I’ve been off work for 10 months now, the pain was too much, and the relationship with my employer went quite sour due to my being on sick leave.

So I wanted to ask 2 questions in the hope to get some support and wisdom.

1) How did you process the chronic part of the illness? I am due for many more tests, scans, surgeries and the waiting lists are long. I find it really difficult to acknowledge I won’t get better in a few weeks or months. Any advice on talking with doctors about a hysterectomy? (I am 30yo)

2) Any tips on dealing with an employer and income protection insurance? I work for a large company yet get minimum support. The income protection provider decided I am not ill, so I don’t receive replacement income. I am living off and covering treatment costs with my personal savings, yet financially this is not sustainable. I can not walk on most days due to the pain, so sadly I can’t just go back to work yet.

Thanks so much to those reading through, I’m looking forward to your replies.

[Aardvarks]

I have found the pain to be much better on the pill, I take this back to back for three months then have a week’s break. I also use mefenamic acid and, when really bad, take cocodomol. Be careful taking cocodomol though as it contains codeine so is addictive.

[Lidv in reply to Aardvarks]

Hey, thanks for your reply Sadly the pill doesn’t work for me, I’ve been on 5 different ones and still had cysts developing, and my pain remained. I’ve not heard of cocodomol, I’ll have a look thanks! Currently I use anti-inflammatory meds and tranadol (a type of morfine).

[Aardvarks in reply to Lidv]

That’s a shame… I have also had the implant and coil suggested before but I have heard horror stories for both (especially the coil)! I’ve had cocodomol prescribed a few times, including after surgery. It helps but can make you drowsy and bung you up! Worth a go though maybe? It’s basically codeine and paracetamol together. Hope you find something that works for you.

[Cailleach]

Depending on where the endo is, a hysterectomy won’t necessarily be a ‘cure’. Not sure where you are at in your treatment journey, ultrasounds can sometimes identify some endo, specialist MRI and /or laparoscopy can give a much clearer picture of what you are dealing with. It is quite common to be offered excision of endo discovered on laparoscopy, you need to ensure this is done by an endo specialist though. Have a read of the NICE guidelines on endo, which you can Google for treatment pathways.

Given your level of pain and if anti inflammatories and tramadol are not controlling it you could ask about referral to a pain specialist. Medication for nerve pain such as gabapentin, pregabalin or amitryptyline could help.

I don’t know anything about the insurance but it would be worth checking if you can challenge that decision, you clearly do have an illness. There must be an appeal process? If you have no income you might be entitled to benefits, worth checking if your local council has a benefits adviser who could help you.

Endometriosis would also be covered as a disability under the Equalities Act, if you were looking to return to work later your employer would be required to make ‘reasonable adjustments’ to help you cope with the effects of your illness.

Hope things improve for you soon.