Endo or IBS?

[Justbx]

Hi all, first time posting on a forum!

After suffering with pains and heavy periods for years, I had a laproscopy last year which found and removed some endometriosis, also had the mirena fitted.

Over the past few months the pains have been coming back worse so called the GP who then referred me back to the gynaecologist. I booked an appointment and was called straight away with a cancellation for the same day, this time with a different doctor than the last. After a very brief appointment where he told me they didn't find endo on my last op, then told me they did, he referred me back to my GP and said its most probably IBS. He also said that the endo won't have returned because the mirena will have stopped it from doing so!

I feel like other than pain in my abdomen I have no other symptoms of IBS and I'm wondering where I can go from here?

Any advice appreciated

[SasF]

Hi Justbx, how frustrating for you! I'm afraid I'm not familiar with Mirena having never had the coil, but are you able to talk with your doctor again and explain that you weren't happy with the referral? Hopefully, you can be re-referred and speak to someone who understands better.

[Justbx in reply to SasF]

Thanks for the reply, I've got a phone call with GP tomorrow so il explain it all to him! Its just all very frustrating 😒

[SasF in reply to Justbx]

Oh that's good, I really hope you get a better response this time. Good luck!

[BookBimbles]

Everything I’ve read is contraceptives can just mask endo symptoms - the disease can still progress. My understanding is on research there’s just a higher percentage of people who don’t have recurring endo after surgery, if they’ve had the coil, but it’s not 100%. Even the NICE guidelines for Endometriosis indicated the Mirena helps with heavy period bleeding, adenoymosis, but not for stopping endometriosis (but I’m not medical!)

But also there are many drivers of pelvic pain. I had a laparoscopy with excision of peritoneal (superficial) endo lesions, with a coil placed during surgery (more in case they didn’t find anything). I’ve also asked and been referred to specialist pelvic physiotherapy. The specialist doctor also said they have specialist CBT / psychology support for chronic pain if it doesn’t go way. And has said I’ll have 6 month review telephone call.

As for IBS though, there are NICE guidelines for that, and there are next steps / specialist level care listed for this… again like endo, it seems another thing you have to persist in asking for. I’ve been labelled as having IBS for 20 years or something but have never been offered anything beyond medications and colonoscopies.

You could also check that with Endometriosis UK (maybe try their support services if not getting anywhere). And there’s always PALS (the NHS patient advisory service in each hospital) you could goto for support with the service you’ve received at gynaecology.

Hope you’re GP could help.