Super rare endo - need help.

[Leebum30]

Hi guys,

I was diagnosed 3 years ago with stage 3 endo which i get on my ovaries and POD. However, i also get it externally in my labia. Having had that removed numerous times I have been put on zoladex and on the waiting list for full hysterectomy - which at 31 scares me, but ultimately the pain was debilitating. Plus i have my son so that's not a concern.

I am on my 4th injection of my second round of Zoladex and i keep getting a pain around 'period' time down there that feels like i've sat on a bunch of stinging nettles. I should add i am on HRT so am getting some oestrogen add back.

My question is: has anyone had it externally in the vaginal area and when it was coming back is this what it felt like? I'm worried that whilst it is calming the pain etc its not helping the stuff i get externally.

Please help me.

[Princesspeach84]

Hello fellow rare endo sufferer! I have endo on my perineum! I have yet to find anyone else who has had this but you are the closest!! I had mine removed a few years back from site and now it's back so I'm having a lap hopefully in a few months. My consultant told me I have to take at least 3 months Prostap before surgery. I am worried it's on my bowel and rectum and I will need a stoma bag but I'm in so much pain I just want it gone! Yes I can relate to the prickly feeling as that's exactly how I would describe it! Get yourself to drs I think MRI can maybe pick it up so drs can see how extensive it is. Good luck!! xx

[Leebum30 in reply to Princesspeach84]

You have no idea how glad you understand. People always look at me like i am a freakin alien when i tell them that i get it externally especially down there. Ive had mine removed 3 times now, but this is entering a new area because to be quite frank, they took everything they could from the last place it grew.

I'm getting the prickles when i am supposed to be having a period, but a long my epistiotomy (?) scar when i had my son and the scarring from the last op. Its a nightmare.

I will go back to the drs though, as i said awaiting a hysterectomy and dont see how that will help this, so want it sorted once and for all. Sawn off at the ribs should do it!

I hope you are ok, if you ever need a chat, message me!