Hello, my name's Jess and I feel like I need some support, and I have some questions. I'm 19 years old and have recently been diagnosed with Endometriosis. When I was about 15 I was misdiagnosed with IBS, and it was only a few months ago that I'd first heard of Endo, and been told by my gynaecologist that this is the cause of my pain.
I get really bad period pains. And even when I'm not on my period, I get a pain in the left side of my tummy, below my hip bone. This pain can happen every day, any time of the month, but it is also related to stress (which happens quite often, as I get anxious about a lot of things.) Also, when I am on my period, for the first couple of days, I get an awful pain in the centre of my chest. It feels like my torso is being crushed and it leaves me in agony. I am terrified of getting the chest pain because it's almost unbearable. Pain killers keep it at bay for only a few hours before it comes back.
I am currently on the pill. First I was on the combined pill, but I'm now doing a 3 month trial on a new one, to see if it will help. I wasn't even supposed to have a period this month, but for some reason, I came on my period when I swapped pills. And like always, with my period, I got the chest pains. My gynaecologist advised me to go to A&E and have them check my heart, just to make sure. I ended up staying overnight in hospital, but turns out my heart is fine, so I've been told to continue my path following the Endometriosis treatment.
So that's where I am at the moment, but I think about it every day and it really gets me down. My parents and my boyfriend know what's going on, and they understand as much as they can, but sometimes I feel like I can't get the full support from them that I need, because I feel like I'm alone in this struggle. It saddens me that there is no cure to Endometriosis, and that for the rest of my life I'm going to have to make decisions based on if I think I'll be in pain or not. I've missed out on outings with friends because I'm in too much pain to do anything. I live 3 hours away from my boyfriend. I'm in the process of moving back to my hometown, but for now, I visit him every other week. But I've had to miss out on visiting him a few times because I've been in pain. Or my time visiting him has been ruined by my pains flaring up. Along with that, I need advice on sex. Me and my boyfriend are both virgins, and we've tried a few times, but we've always stopped because it causes me a lot of pain. He is very understanding, but will I always be like this? Will I never be able to properly have sex with my boyfriend?
Another thing that upsets me is problems with fertility. I'm not wanting children yet, but I think of the future and whether I'll be able to have children or not. My gynaecologist said that the only way to find out how bad it is, is to have surgery, but she's decided that it should be the last resort for me. But it tears me apart thinking I might not be able to have kids, and that I'll never be cured of it. Last year I didn't have any of these problems and I remember feeling free. But now I just feel trapped, like it's controlling my life.
When I was in the hospital, they were bewildered by my chest pains. Does anybody else get chest pains because of endometriosis? The doctor also told me that I didn't have endo. He was very adamant that I didn't have it. But I'm guessing he looked at all my swab results and ultrasound scan results, and he must have assumed that I don't have endo because they say 'clear'. But my gynaecologist told me that endo doesn't come up on those tests, so of course they will say clear. I didn't figure this out at the time though, so at first I was confused about where the misunderstanding was as to whether I have it or not, then I believed the doctor and was so relieved that he said I didn't have it. But now I feel let down. I got my hopes up just because he made a mistake.
This is my first post on the website.
I would appreciate it if people could discuss this matter with me. Thank you