Endometriosis UK
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A referral to BGSE accredited centre is a must !

I have struggled for over 8 years to get a diagnosis and to receive any appropriate treatment. I have been treated for IBS and made to feel like I have been wasting G.Ps time for far too long. Finally I got my diagnosis in March this year following Laparoscopy, I was informed I have many adhesions sticking my uterus, bowel and POD together. My general Gynaecologist informed me surgery was "too dangerous" and that I could try Zoladex to temporarily put me into the menopause.

Luckily I had joined this site and was made aware by Lindle and a few other ladies on here that the Endometriosis Specialist was where I needed to be for the appropriate treatment and support. I went back to my G.P to be referred and after much waiting I finally got to the Endometriosis Centre to see the specialist last friday.

I was listened too, assigned my own Endometriosis nurse and offered further scans to ensure all of the Endo is found. I will have the injections for 3/4 months to reduce my Endometriosis but this will be temporary. My consultant was fabulous and assured me that with a multi disiplinary team of surgeons surgery would go ahead and he could unstick my stuck bits and ease my symptoms.

Ladies please push for a referral to these centres and get the correct treatment and support. I feel like a weight has been lifted and will have my op in approx 4 months so will keep you updated ..... Many thanks Xxxx

3 Replies

Fantastic post Tillytrotter, well done for sharing your hard-earned knowledge.

There needs to be far more done to make all the women on here realise that being fobbed off by GPs and general gynaes (who are generally not really specialised enough to deal with all the aspects and complications of Endo) is not acceptable.

BSGE Clinics are where you need to be treated if you have Endo and it is difficult to treat. Your GPs should know to refer women - there is a strict protocol to follow - to these centres, where there are back-up bowel and urinary etc specialists.

Thanks for your post Tilly - and all of you: keep on spreading the word!

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The lack of knowledge about these centres is astounding - I was referred by the gynae who diagnosed me after several months of faffing around (before he would finally admit that the reason he wouldn't give me a date for the hysterectomy he told me I needed was because he didn't actually want to do it given the extent of my bowel endo).

When I went back to see my GP to ask what she thought, she told me I shouldn't bother with the endo centre (which is an hour away) and should just have the hyst with the local gynae because 'people will visit you in hospital if you're near home.'

I have already had one surgery at the bsge centre and I'm so glad I didn't have the hyst done by the local gynae.

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So uplifting to hear this hopeful story and I am chuffed to bits for you that you are finally getting the treatment you need and deserve.

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