Endo Pain

[KelsiElouisee05]

sorry it’s so early (2:28am)

I’ve been unable to sleep at all tonight due to the severity of my flare up. My stomach has doubled in size, I feel like I’m going to throw up and I’m just so sick of waiting for a GP appointment.

my question is would I be better off waiting for my Gp to refer me to gyne or would it be better if I went private? At this point I’d take out a loan because it’s severely affecting me and my life.

I have two children, my eldest is almost 3 and my youngest is 7 months. Since having her my period has been constant. Always in pain, stomach swells up, heavy and painful bleeds. It got that bad I saw an out of hours GP and he thought my appendix had burst with my pain. Turns out it’s suspected endo. I don’t get why they say that like it needs confirming not just an assumption.

I do have all symptoms of endo and I believe I’ve had it for many many years but right now it’s taking a toll on my life. How do you guys cope? I’ve just taken some cyclazine to help with the nausea but I’m tired so so tired of being in so much pain all the time…:

[MangoStickyRice]

Hi,

Sorry to hear you are in so much pain. In my opinion and experience so far:

NHS 👎👎👎 inexperienced, horrendous wait times and administration mistakes - I was lost in the system multiple times, scheduled for incorrect procedure and referred back to GP without discussion.

Private Gynae 👎 much faster initial appointments but they were inexperienced when it came to endo and adeno.

Private Endo Centre 👍❤️ has the thumbs up at the moment. Fast response and appointments. Extremely understanding, caring and gave me validation. Took my concerns seriously. I'm scheduled for my second laparoscopy in May.

It can be worth paying just to get validation from a Specialist. Start with the consultation and then gauge costs while you are in there. If you decide it's too much, I would say that the £150-£200 is probably worth it in most cases anyway just to get someone to listen and discuss the best route to go down.

I hope you get some answers and they can help with the pain.

[Scoutybob]

I was in a similar situation and went for a private ultrasound and they were brilliant (£250 I think?). It confirmed endo and adenomyosis that I managed to take to an NHS consultant who then took it more seriously because of this and immediately referred me for an MRI so it sped everything up. I'm now on the long wait list for BSGE consultant as it's severe but at least the diagnosis was sped up.

On a side note - you sound so much like I was last year. I've overhauled my diet removing gluten and most processed and for me personally, it has made a hugggggeee difference and it's making things so much more bearable. It's not something that works for everyone but it might be worth considering if you haven't already. The 'Heal Endo' book is very informative as well to try and help manage symptoms until seeing a consultant.

[KelsiElouisee05 in reply to Scoutybob]

Thank you! I’m going to look into private x

[Sunset-lady]

Hi, the advice here is spot on. I saw a private endometriosis specialist (£200) and had a private MRI (£500) and my endometriosis was confirmed but there aren't many options after that! You could go on waiting list for hysterectomy or they'll put you on Zoladex/prostrap but you need to change your lifestyle too. No alcohol was the single biggest change I made regarding the pain. I also kicked out gluten - huge change to the pain but not the bleeding which has been dreadful since peri menopause x you'll be exhausted today so look after yourself xxx

[KelsiElouisee05 in reply to Sunset-lady]

Thank you! I’m going to look into all this. I’m 23 so I doubt they’d do a hysterectomy xx

[KlP28]

You might think it sounds dramatic. But seriously - call an ambulance. Let them examine you in hospital. Things will happen so much quicker! Trust me, wish I had of done. 19 years to finally get diagnosed. By this point as you can imagine, absolutely riddled with endo! Fibroids,chocolate cysts, organs stuck together… wish you all the best! Xx

[KelsiElouisee05 in reply to KlP28]

I’ve rang an ambulance many times, I even went to a different hospital aged 17 rolling around in pain because of the severity of it, the only medicine that seems to take the edge off is morphine.. whenever I go to hospital they say it’s ibs x

[KlP28 in reply to KelsiElouisee05]

Hi.. sorry to hear this. When you ring an ambulance next & get taken in. Demand you want to see gynaecology. Then when you see gyne, say you want to see an endo specialist consultant. This has been going on far too long & you want answers. It’s ridiculous the time they take to diagnose women. They can not make you leave the hospital. So say you are staying until you see the professionals you want to see. Good luck xx

[Sunset-lady in reply to KlP28]

It doesn't happen like this though. You see the on call gynae who gives you pain relief. A lot of hospitals don't have an endometriosis specialist. I'm in the North East and the situation is dire. They discharge you and tell you you'll be referred but referral times are currently 12 months. They can make you leave the hospital because it's A&E so there is nothing more they can do. I've been there several times and it's awful xxx

[Sunset-lady in reply to KelsiElouisee05]

Yeah they told me it was IBS for 30 years x

[Sunset-lady in reply to KlP28]

Me too lovely x it's awful