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Micaela’s endometriosis story

Micaela thought painful sex was just part of life as a woman, but an attentive doctor knew there was more to it. Find out what happened.

Transcript

I'm Micaela, I'm 31, and I'm here to talk about endometriosis.

From my very first period, I was bleeding for 10 plus days. I just had really long cycles, a lot of bleeding, a lot of heavy bleeding.

The first time I guess I had symptoms, that retrospectively I recognise were endometriosis, was when it came to sex. From the very first time I think that I had sex, I felt pain. And for some reason, girls have been told to expect that. That the first time that you have sex it's going to be painful because there are all these stories about the hymen, which I now know a lot of which aren't true at all. There were times when during or after I would be in tears because of the pain. But nobody ever told me that that wasn't normal.

It really had a massive impact in the relationships that I had and it's difficult because you know, you're early 20s, you're dating, you're meeting people. At what point do you tell them about this? Young people aren't really taught how to have conversations about sex, about sexual pleasure and about sexual pain. Because those two things can affect everyone. You know, I remember that there were times where I'd say, I'm sore, I'm in pain, I don't know what to do. And it wasn't taken seriously.

I woke up one morning and I was essentially paralysed. I was in so much pain I couldn't even really tell to begin with where it was coming from. And I couldn't move for about 40 minutes. My phone was in the room but on the other side of the room and I couldn't get out of bed to get my phone. I had no idea what was going on and eventually I could sort of, the pain subsided enough for me to be able to move. I called my mum. I said, you've got to take me to the doctor. So we went to the doctor. They rushed me to get an ultrasound and they found a cyst that they thought was probably what was causing the pain. So they sent me to a gynaecologist.

And I would say probably the biggest reason why my story is so much better than other women's stories, that I've had so much more success, it's because of my gynaecologist and my doctor. He was so great. So I went to his appointment and by the time I got there, the cyst had gone down. But instead of just saying, oh it was probably the cyst, or it was probably just periods, get out of here, he started asking me questions. And he really interrogated my sexual health and my physical health when it came to my reproductive system. He asked very specific questions about my period, about my cycle, even about my emotions, and I remember at one point he said, does it ever hurt when you have sex? And the tears started.

It was the first time anybody had ever brought that up with me that that could be a thing. And I said yeah, and he sort of very gently coaxed some information out of me. And he said, look, I think you might have endometriosis. There's no other way to figure that out for certain unless we go in, so let's just go in. So he said, let's try to stop you from having a period altogether, and I said, it sounds fantastic! So I was on the pill continuously and then when I had my second surgery, he said, let's put in the Mirena, because you're already going to be under general anaesthetic and we'll pop it in. The Mirena is a type of sort of hormone therapy, very similar to the pill, but it doesn't go through your digestive system.

So the implant is here in my arm, very similar to the Mirena coil, as far as I know. But it's generally, it's either or. There are very few women who have both. And most of the time when I go to the GP and they get my history and I tell them I have both, they're quite surprised. But I have to say, for a good five or six years, I was fantastic. Occasional a little spotting, occasional cramping, but nothing like what it was before.

So very soon I'm going in for my third laparoscopy because in the past six months the pain has really been just every day. When it gets to that acute, sharp pain, when it feels like, who just stuck a Stanley knife in me, that's the stuff that's really difficult to handle. It impacts on your work, it impacts on study, it impacts on social life.

Diet and exercise are things that I think are definitely good to look into and I think people should look into anything that's going to help them with their symptoms.