Endometriosis help - what happens now?

[Nicky01-]

Hello ladies, I hope everybody is doing well. I am in the process of being diagnosed with endometriosis after years of pain and being told ‘it is just period pain you will get over it’ which gets tiring! I am 27 and the endometriosis really triggered over the first lockdown when I contacted an illness which affected my immune system and bladder and resulted in excruciating pain prior/during periods. I no longer can enjoy being intimate with my partner, I bleed through clothes due to heavy flow and every month I dread the day my period is due. I finally had a gynaecologist appointment and so far have had an internal examination and just yesterday an MRI scan. I was just wondering from experience what the next step is now, I have been informed about the keyhole surgery but I have had no confirmation or any help/advise really and I just feel lost and feel like it now is just a waiting game. Would appreciate any advise anybody can give me as I feel so lost. Thank you for reading x

[Leon1o]

It changes slightly depending on what your MRI shows, they don't always show anything. If they can't see anything or can see some signs of endometriosis then your next step is keyhole surgery to get an official diagnosis and to see if they can remove or unstick any of it that may be attaching organs. If they see alot of it near the bowel on the MRI they will need to organise to have a bowel surgeon present during the op which likely means you will wait longer. In the meantime they will definitely get you to try different contraception methods and medication to control your bleeding, if your experiencing alot of pain you can also request pain medication to help you manage. Unfortunately if you do have it it will most likely grow back so dealing with your symptoms is the main treatment especially as surgery can cause more adhesions to form. I really hope you find answers, I had a lap that showed nothing with a general gynaecologist and am now having difficulty getting an MRI and a refferal to an endo specialist so I really recommend not accepting a laparoscopy with general gynae and demanding a specialist but do be prepared that they have very long wait lists. I hope that helps, also there are lots of endo groups on Facebook that have loads of helpful advice, especially when it comes to surgery prep and just general support x

[Nicky01- in reply to Leon1o]

Thank you so much for the reply. It’s helpful just knowing you not the only one going out there going though this. X

[Leon1o in reply to Nicky01-]

Oh 100% it's quite isolating in alot of ways and I feel like Dr's just brush off alot of our worries so it's good to reach out to other people experiencing the same stuff. I don't know if you are in the UK but the fb group endometriosis support UK is great x