Endometriosis UK
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Occupational health: Positive experience!

Hi ladies (sorry long post),

I just wanted to share with you my positive experience with Occupational Health in work to give some of you hope :)

Now, I should mention that I work in a University and I am aware that we are very lucky with the way our HR department can treat us when it comes to sick leave, longterm conditions, etc. Also a bit of background about myself: I have had symptoms for about 2 years which got rapidly much worse when I initally came off the pill. I had a lap under general gynea in December which came back clear but my symptoms never improved, I got fobbed off from A&E afterwards saying all my pain was gynea related despite my lap being clear... this is when I decided to pay for a private consultation with an endo specialist who also works for the NHS - he referred me back to his NHS clinic and he decided to do another lap on me as he thinks I have digestive endo and/or adenomyosis - I am currently waiting for my surgery date!

I am in the meantime on the Mirena coil which helps with the crazy bleeding I used to have but my pain is still there and still getting worse... which is why I have to take time off at least once a month during my periods as I cannot stay sat down or stand up for prolonged periods of time and no way I can sit in meetings either. This is why my line manager (who is really supportive and again I am aware I am lucky in that respect) decided to refer me to Occupational Health to assess my fitness to work and get recommendations on reasonable adjustments.

I had my OH appointment on Tuesday - I was dreading it but it was all for nothing! I saw an amazing OH nurse who knew a lot about endo and completely understood my symptoms and needs! She recognised that the only treatment is the lap where they do excision and aknowledged that until I get it done, I will still be in pain and that I will need adjustements. She came up with working from home for these days where I can't come and sit in work but I am still able to work on a laptop in comfy clothes from the comfort of my home! I am yet to have the follow-up meeting with my manager to discuss the conclusions of my appointment but it was just so nice to come across a nurse who knew lots about the condition and who was super understanding!

If you have any questions about OH assessments I am more that happy to answer from my experience!

x

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Tissues great to hear such a positive response from your employer! It must be a huge weight off your mind. I hope they'll also be supportive if you are unable to work and need time off.

I also had a laporoscopy with general gynae 2 years ago and came back clear but I just had an MRI through a orthopaedics referral due to hip & back pain which has shown stage 4 endo. You're the first other person I've heard of also experiencing this. Well done to you for going and getting a second opinion and not giving up. I just took it as fact and I can see now that I need to follow my instincts more.

I've got my GP today and I'm going to insist I get referred to the specialist endo centre. I dont have typical endo symptoms, my periods are pretty much problem free- relatively light, not that much pain & regular. Fatigue is my biggest issue and it's constant. I also have constant pain and back pain. The back pain can get really bad but I've found going to the chiropractor helps.

Is it a specialist endo centre you've seen the specialist or just general gynae?

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I'm not under the endo specialist centre but I am being seen at a hospital which holds one and my next lap will be with one of their bsge accredited and endo specialist surgeons (hence I bit the bullet and have a longer waiting time for the lap than for a routine one!)

I went and sought a second opinion after one of my boyfriend's colleagues told him about her experience and she went through the exact same thing! They missed her endo with 2 laps, got a third one with the specialist I am seeing who told him she was riddled with it afterwards! So many girls getting misdiagnosed because general gynaes don't know what they're looking for!

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It's awful! I just don't understand why gynaes aren't better trained when it's such a common disease, probably contributing to so many of their patients problems. It makes me really angry.

I'm just back from my gp to request to be referred to the specialist centre. She had never heard of it (it's about 20 miles away from us) and I had to Google it during my consultation to tell her about it. She wouldn't take my word for it and said she'll have to contact the gynae service and ask them for info. You really do need to become an expert in the disease! It's awful. I don't expect GPs or any doctor to be an expert in every disease or presentation but they should know their limits and not act like an expert when they're not. After my GP appointment I read the nice guidelines for endo and I can already see I'm not being treated how I should. I can feel a strongly worded letter being composed shortly! 😤

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