What's next?: Again, I am fed up and again... - Endometriosis UK

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What's next?

MegTweed
MegTweed

Again, I am fed up and again I am in so much pain. I know right now it is because I am ovulating but I had a horrid sleep last night and was up early hours of this morning.

About a year and a half ago I asked my GP to refer me to a BSGE centre which she did. They referred me to their pain clinic first who helped with my numbness symptoms but nothing else. The only thing the DR did was examine me, explaining that my pouch of douglas is tender, and that my endo is most likely growing deep (I was diagnosed about 5 years ago under general and I was told it was minimal, then went back a year later for another op due to ongoing pain and was told no endo had grown back).

After a year with pain management I went back to the specialist and asked for an operation to determine where else my endo may be growing etc... he said that he would need to have a neurologist present and he thinks there will only be a 20% chance he will find endo due to the last op I had 4 years ago... I felt so dismissed.

They did not carry out an ultrasound or MRI and no other tests, and I feel that from reading posts on here, this is the norm? I just feel so frustrated. Half my life I have been in pain, which has only got worse with increased symptoms such as pain when using the toilet and shooting pains in my private parts. I was diagnosed 5 years ago and dismissed, then finally get myself referred to a specialist and feel dismissed again!

I have sent a letter to my GP asking if she can refer me to a BSGE centre in London, I guess this is the right thing to do?

I just feel so fed up and like I once again, haven't been taken seriously.

2 Replies
oldestnewest

Hi Meg, I’m so sorry to hear you’re not feeling supported by the medical professionals. Unfortunately that seems like a common issue with endo sufferers.

I can imagine you’re very tired of it all and rather deflated but don’t give up. If I were you I’d start with joining a local endo uk support group (groups in your local area can be found on the endoUK webpage). These groups have a wealth of knowledge when it comes to navigating the health service and getting your voice (and pain!) heard. It can be daunting but it’s amazing to know that you are with people who actually understand.

Requesting another referral to a BSGE is a good idea, you’ve already been diagnosed, if your symptoms are starting to worsen it’s because the endo may have progressed - stand by your guns!

Unfortunately, it’s a familiar feeling the frustration of the NHS. I was diagnosed in Aug after 7 years of being told my pain was normal (have a baby that’ll help...). For the 4 months leading up to finally getting the lap my symptoms escalated completely out of control. Even with a lap proving I have stage 4 endo affecting my bowels I’m struggling to get the BSGE referral I need, I’ve had to call and check up on every referral he’s sent (and they’ve all been wrong!!) it’s so frustrating that I’m now paying for a private consulation in Jan at the Oxford BSGE whilst I’m on the waiting list for my local centre through the NHS.

Whatever you do don’t stop pushing, fight your corner. Realising that has been a huge revelation to me these last couple of months- you can do it!! Xx

MegTweed
MegTweed
in reply to HikerGirl

I am so fed up and I did give up for a while after the BSGE centre basically dismissed me, but then I got bad pain and thought no! Screw this, I am not going to put up with this. It is just seriously so so rubbish. I have been on Endometriosis UK this morning and have found some support groups near me so I think I will go to the next meet up. Thank you for your response xx

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