New to diagnosis but not to endometriosis…feeling a bit desperate!

[BooksBooksBooks]

Hello everyone. This seems to be a bit of a theme on here but I just feel so desperate and so alone with all this. I first went to the GP about my period/bowel symptoms 20 years ago. I was told ‘all women feel this way at some point’ and told I needed to ‘move on from this and find ways to cope’ by the time I was 24 (I was 21 at the time) and was given a prescription for an anti-depressant. Since then I have been in and out of the GP/nurse’s surgery trying to get someone to listen to me, especially since my caesarean 10 years ago. I’ve just been repeatedly told this is IBS + heavy periods. Finally, I had such a severe bleed/pain in February so was sent for a scan. They found three large ovarian cysts and my GP flung the word ‘endometriosis’ at me without any explanation or support. I got my gynaecology appointment through yesterday, it’s in June of next year at 11.30pm!!! That’ll be a 18 month wait from referral.

I am in severe pain ALL day EVERY day. I feel sick a lot of the time. I have terrible bowel symptoms (which I won’t bore you with!) and I feel so low and bordering on depressed. I cannot bear this constant pain.

I am thinking of trying to se with can get a private gynae consultation. I could never afford private treatment, just the initial consultation. I just want someone to listen to me and take me seriously. I am so terrified I will be dismissed. Has anyone gone down this private consultation route? I want to know what’s going on and my body and for a professional to hear me.

[JustJoinedTheClub]

Hi there. So sorry to hear you about the long wait you have ahead of you, and totally understand why you want to go private just for a consultation. I've just received an endo diagnosis out of blue and wanted more answers so I paid to see a private consultant who is touted as an expert in endometriosis.

This is just my personal experience so please take this into consideration.

I received my diagnosis from an MRI scan on the NHS and found that the gynaecologist, while very nice and clear, was quite non committal in terms of her conclusions on my situation eg "they could offer you surgery but they may not, this could happen to you, but it might not" and I just wanted to know if surgery was inevitable for me and what actually could be done for me and my situation.

I went to a private consultant and yes he was very quick to say that I definitely have severe endo and that I needed surgery for sure. But based on the MRI report that I brought him, he wanted to do a re report on the MRI imagery with his own radiologist to be certain, which obviously costs more money to do and left me feeling more worried he couldn't conclusively say what the extent of the endo was. He was also very cheerful and smiley in his approach to talking with me, which I accept may be reassuring for some people but for me, I found it hard to stomach, especially as he would drop in some really scary risks so casually. I felt like he didnt really think about the psychological impact of his words.

To conclude, you may get answers, but you also may end up with way more questions and nothing conclusive again and if you wanted more info you would have to continue to pay them. It is just a 20/30 min consultation after all, there is only so much they can cover without investigating your condition by themselves with their own equipment and specialists. Hope that helps xx

[BooksBooksBooks in reply to JustJoinedTheClub]

Thank you, that’s a really helpful perspective. I can certainly understand why you felt your consultant’s ‘cheeriness’ was off-putting. It’s no better than not being looked in the eye and coming across as disinterested, which has been my experience of my GPs so far! I wish you all the best.

[Bakewey]

I went down the private route. Got put onto a NHS waiting list at a specialist eddo centre. Had first appointment swiftly. Then a bit of a wait. From nowhere came a cancellation call, I’d be made it to the front of the line for a laparoscopy!

Been told had cysts on and off for years. After the op my notes confirmed Stage 4 endo. On a list now for a hysterectomy.

The advice I was given helped me to understand things and set me on a clear treatment pathway.

Good luck with things.

[Cia12]

Some of the private clinics offer interest-free payment plans For surgery. Might be worth even to have a once off consultation and they might be able to prescribe you something in the meantime. I'm on dienogest , which I think can only be prescribed by a gynecologist. A consultation would be around £150 ish

[BooksBooksBooks in reply to Cia12]

That’s really helpful, thank you. All the best with everything.