Help! Diagnosis of Pcos - But really is it Endo?

[EGBee]

Just been diagnosed with Pcos after 12 years of battling painful, heavy periods. Although cant argue with the scan showing the pcos, my symptoms actually add up to Endometriosis more than pcos. Latest visit to Gp today after heavy bleed last 5 days, with large blood clots, sharp stabbing pain right in my bladder. Gp more interested in giving painkiller and hormones to cover symptoms than looking into Endometriosis. How have people had a diagnosis? Anyone else with pcos had similar symptoms/experiences?

[Ronsk]

Hi, I have both endo and pcos, pcos was discovered by a scan then a few years later endo was discovered by a lap. There is a possibility you could have both. Tell your dr you have concerns about endo and would like referred to gynae. My symptoms of endo were severe period pain so much so I was unable to function and took cold sweats nearly passing out with the pain. My period started as chocolate brown colour and then fresh blood followed by chocolate brown..I was also very tender down there and In my back passage everyone's symptoms and pain levels are different though. I hope you get some answers.

[GabiOs]

Hi, i don’t want to scare you. Just take another opinion because you can even have adenomyosis, pcos and endometriosis. I recomend you a web site where you can find tons of real information about endometriosis, the name is Nancy’s nook endometriosis, google it. Good luck!

[TennisAM]

The next GP you speak to I'd say "if this gets worse, you and i will both be in trouble". I.e. if you don't do anything I'll sue you. Sometimes we have to be direct. When I was refused a referral 12 years ago and told to go away and take paracetamol. I said "are you stupid, refer me now I want to speak to someone who actually knows what they're taking about because you clearly don't". Got referred and was told its suspected endo.

Now you don't have to do what I did but I would read the guidelines below (which they should be following). Trying management options are not mandatory so I would say I'm not happy and I want to be referred. I'm not taking no for an answer. If you have a good bsge endo centre nearby (and have bowel/ bladder or other symptoms to suggest you might have multi organ involvement I'd insist on a referral to the specialist bsge centre).

Management /diagnosis of endo NICE NHS guidelines:

cks.nice.org.uk/topics/endo...

NICE when should I suspect endo:

cks.nice.org.uk/topics/endo...

Ultimately knowledge is power. If you understand their job as well as they do you can outsmart them. If you feel nervous about being assertive with them then ask a friend/sister who you trust to role play with you. Say to them all the rubbish the doctors have said to you and practice a calm response. Assertive and knowledgeable responses will floor then because they're not used to people challenging them.

Ultimately its possible to have both pcos and endo so they can't stop there just because you have one diagnosis.

Good luck xx