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Untreatable endometriosis at 18 years old.
I've been facing some new challenges with endometriosis lately, and I didn't know where else to turn but this forum. My story, sadly, doesn't have a very happy ending.
I have endometriosis. I've had severe pain since I was 13, and all the other traditional symptoms. I was put on birth control pills at 14. They worked well for a while, but eventually, I started to cramp and bleed even when on the pill continuously. My current gyno at the time told me to take breaks from the pills so my body could "recharge" when the pain came back, but when I started taking breaks every month or so, it's like I wasn't on the pill at all.
About a year ago, I found a great gynecologist who took me seriously and put me on progesterone pills. He told me to take them continuously, without breaks under any circumstance. He said the regular estrogen contains birth control pills contributed to my problem by fueling any possible endo. Those pills worked wonders for the first eight months or so. Recently though, the pain has started to return daily and I'm taking two doses per day. It's not like I can't handle it. But it does cast a shadow over everything. I can't be truly happy and carefree with this lingering, throbbing pain.
Throughout all of this, I've had an identical twin sister. Her symptoms were always the same as mine, but slightly worse. She unfortunately didn't get as much relief from the pills as me. Shortly after we both turned 18, my sister finally got a laparoscopy. It was confirmed - endometriosis, moderate in the scope of all cases, severe for her age. The surgeon excised and cauterized some of it, but left a majority of it because the lesions were small, speckled, widespread, and in places that couldn't be treated (such as near the ureter). There was a particularly bad patch on the abdominal wall, about two inches across. Her gynecologist told her he'd be willing to get more invasive when she has future surgery, even stripping part of the uterine wall, but for now, he's going to try Lupron.
Because of my symptoms and because we are identical, my own diagnosis is as good as confirmed. If Lupron helps my sister, I'll do it too. I'll need surgery as well down the line. Overall, this experience has been very emotionally draining. To have things end in bad news - "sorry, it's endometriosis and it's not surgically treatable" - is kind of heartbreaking.
I've felt a little numb to be honest. I've missed out on so much due to this pain - birthdays, weddings, holidays, vacations. I see so many women out there saying how birth control is bad because it "messes with your body" in an unnatural way, and they're happy to be "au-natural", and it makes me mad because I know going hormone free isn't an option for me. I shudder thinking about how my system has probably been thrown out of whack with so many different types of pills. So much for a holistic lifestyle.
I see all my friends living pain free, and I'm so horribly jealous. I feel like such a freak, because no one understands this disease and I don't feel like explaining it to a bunch of immature teenagers. None of this felt real until my sisters surgery, but now, the realization this could be a lifelong struggle has hit me like a tidal wave. Why did this have to happen to me so young? I'm only 18.
Sorry for the long rant. Usually I try to stay upbeat, but the pain was particularly bothersome today, so maybe that's why I feel so hopeless. If it was only an occasional thing I'd be fine, but the little things do add up. Any advice? Words of wisdom? Success stories (those would be amazing - everyone on this forum seems to have such bad luck). Anything?
I have endometriosis. I've had severe pain since I was 13, and all the other traditional symptoms. I was put on birth control pills at 14. They worked well for a while, but eventually, I started to cramp and bleed even when on the pill continuously. My current gyno at the time told me to take breaks from the pills so my body could "recharge" when the pain came back, but when I started taking breaks every month or so, it's like I wasn't on the pill at all.
About a year ago, I found a great gynecologist who took me seriously and put me on progesterone pills. He told me to take them continuously, without breaks under any circumstance. He said the regular estrogen contains birth control pills contributed to my problem by fueling any possible endo. Those pills worked wonders for the first eight months or so. Recently though, the pain has started to return daily and I'm taking two doses per day. It's not like I can't handle it. But it does cast a shadow over everything. I can't be truly happy and carefree with this lingering, throbbing pain.
Throughout all of this, I've had an identical twin sister. Her symptoms were always the same as mine, but slightly worse. She unfortunately didn't get as much relief from the pills as me. Shortly after we both turned 18, my sister finally got a laparoscopy. It was confirmed - endometriosis, moderate in the scope of all cases, severe for her age. The surgeon excised and cauterized some of it, but left a majority of it because the lesions were small, speckled, widespread, and in places that couldn't be treated (such as near the ureter). There was a particularly bad patch on the abdominal wall, about two inches across. Her gynecologist told her he'd be willing to get more invasive when she has future surgery, even stripping part of the uterine wall, but for now, he's going to try Lupron.
Because of my symptoms and because we are identical, my own diagnosis is as good as confirmed. If Lupron helps my sister, I'll do it too. I'll need surgery as well down the line. Overall, this experience has been very emotionally draining. To have things end in bad news - "sorry, it's endometriosis and it's not surgically treatable" - is kind of heartbreaking.
I've felt a little numb to be honest. I've missed out on so much due to this pain - birthdays, weddings, holidays, vacations. I see so many women out there saying how birth control is bad because it "messes with your body" in an unnatural way, and they're happy to be "au-natural", and it makes me mad because I know going hormone free isn't an option for me. I shudder thinking about how my system has probably been thrown out of whack with so many different types of pills. So much for a holistic lifestyle.
I see all my friends living pain free, and I'm so horribly jealous. I feel like such a freak, because no one understands this disease and I don't feel like explaining it to a bunch of immature teenagers. None of this felt real until my sisters surgery, but now, the realization this could be a lifelong struggle has hit me like a tidal wave. Why did this have to happen to me so young? I'm only 18.
Sorry for the long rant. Usually I try to stay upbeat, but the pain was particularly bothersome today, so maybe that's why I feel so hopeless. If it was only an occasional thing I'd be fine, but the little things do add up. Any advice? Words of wisdom? Success stories (those would be amazing - everyone on this forum seems to have such bad luck). Anything?
Ya for some reason the last year I have not received any notifications that someone has posted or responded so I am sorry if I am delayed as well.
Thanks Ticked and Annie. Sorry for the late replies, I don't check medhelp as often as I should! This entire community is so thoughtful and supportive, maybe I will utilize the private message function more often.
I can tell you one thing. If a doctor is telling her or you that its untreatable or too much and can't treat it then he isn't an experienced surgeon. Everyone with Endo reacts differently to different medications and not one medication is good for everyone so it will take time finding the one that works for you. However both of you should see someone who specialises in Endo and that I can help you with. I am an advocate and an Endo suffer for the last 25 yrs and I have researched my brains out and I am here on this board to help people like you find your way and not to feel alone. This disease is very isolating and it can at times leave you feeling hopeless. You can message me where you are around and I can give you some names of some reputable surgeons in your area. You need to be treated by someone that can excise the Endo (cut out) and off everything leaving nothing behind. If you read my journals in my profile you will understand that I have been where you are but I wasn't diagnosed until I was 27 when the damage was done to my organs but I had an amazing surgeon and that is key.
I am here to help and support you along your way. Please reach out of you are interested
I am here to help and support you along your way. Please reach out of you are interested
I think you should go to a reproductive endocrinologist who has endometriosis as a specialty. I used to have one (he was my RE for a different reason, but we were talking about endometriosis once and I found out about what he was able to do). What I especially recall was that he was good at finding and removing small scattered dots of it that other doctors either missed, thought was not significant, or didn't want to bother to try to get. One doctor is not enough if you are not getting answers. Medicine is as much an art as a science, and if you have not found someone who is particularly interested in endo, you will not get the best treatment for it.
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