Gynaecologist referred me to the gastroenterologist

[bunnyp34ch]

I've been suffering with bad pelvic pains for about 3 years now, always had heavy painful periods as a teen but only really investigating it now as it keeps me up at night and is literally excruciating. I am 22 now.

I was bounced around GPs for about 2 years and finally decided to see a private specialist last week. It wasn't cheap, about £200 for the initial appointment. She said we had 3 options:

1. Mirena coil, which I said no to as I'm sick of changing my contraception without any relief to my symptoms and also not knowing what the problem is.

2. Gastro referral to rule out digestive issues

3. Laparoscopy.

We went with the gastro referral as she didn't want to do anything more drastic until we were definitely sure it's not my bowel as I have a history of IBS and eating disorders. Everything else has been ruled out: hormone issues, fibroids, cysts, structural abnormalities.

I think it's sensible to go gastro first but I also feel like it's just going to be a waste of another 150-200 quid because the pain is definitely not IBS or digestive in my opinion, which causes me more bloating and sharp stabbing pain in my abdomen than the horrible persistent ache in my pelvis.

She was very nice and understanding and involved me in the decision. She said she sees women who she is certain have endo and others she is certain don't, and that I am somewhere in the middle of that spectrum. It still feels like no one believes me and I'm still in pain. Trying to be optimistic but it's hard when it hurts.

[CatherineEndo Moderator Moderator Endometriosis UK]

Hi bunnyp34ch,

It is good to rule out or include any other conditions that may be causing some of your symptoms. It could help you to keep a diary of your symptoms so that if your symptoms are cyclic this can be more clearly explained to your doctors, you can find one here: endometriosis-uk.org/visiti...

You are entitled to a second opinion on the NHS, although this can take time. I wish you the best in your investigations.

If you need someone to talk to, we do have a network of support services that are available to anybody affected by endometriosis. Our free helpline (0808 808 2227 )is run by volunteers who have personal experience of endometriosis. The helpline is open most days – the times it is open can be found here: endometriosis-uk.org/suppor...

You may also find our support groups useful as a place where you can discuss endometriosis and the issues you are facing with other sufferers.

Please visit: endometriosis-uk.org/suppor... to find out if there is one in your local area. If you find there is not a face to face support group in your local area, we have an online support group.

[Cailleach]

I think you made a good decision not to go for the coil without having a definite diagnosis. I can understand why you would be offered the option of being checked out by a gastroenterologist, given your history, but it you are pretty sure this is something different then I don’t see why you shouldn’t get back in contact and say you want to go for a laparoscopy. Were you planning to go private for that? Is your consultant or whoever is doing it an endometriosis specialist?

Another option could be to have an ultrasound or MRI done by a someone specially trained in endo as they may be able to diagnose from that.

[bunnyp34ch in reply to Cailleach]

I was going to go NHS for the laparoscopy if that is needed. I do want to go for it but I'm also worried about going through that for it to just be something gastro; would rather go gastro then lap rather than the other way round. Surgery is a last resort at this point.

However I feel a bit gaslit by professionals in that I keep swearing it's different to my IBS and existing digestive issues but everyone disagrees. So I'm a bit confused really.

My gynaecologist specialises in endo abd works closely with a gastroenterologist who in her words 'gets it' and works with a lot of her endo patients. She advised that route first.

I've had an ultrasound which the gynae is looking at and getting back to me about. No one has offered me an MRI though as an option.

[BloomingMarvellous]

It’s so confusing isn’t it ! It seems irritating but it’s the way they divide the body up that actually muddies the water when you have a possible umbrella type disease process that can be causing both issues or it maybe a stand alone. Many women are often diagnosed with IBS but the root is endo . They are right to check both. If as you say the gynaecology specialist you see is working with another specialist who gets it I reckon that’s a good place to be. Get yourself on both lists. You can always delay or cancel one if you get an answer

[bunnyp34ch in reply to BloomingMarvellous]

You're right, I have noticed that with other medical issues I have had in the past too, everything was discussed separately and as if independent of each other, e.g anxiety and IBS when it's clear they can be codependent sometimes.It's almost like you have to get your foot in the door with a good specialist now just to be taken seriously.

Thanks for the advice and the helpful responses