Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

1,254 Members
9,441 Posts
0 Online
Women's Health
/ Endometriosis Support Group

What to do next?

aslaimee
aslaimee

Hi guys! My name is Aimee and I'm 22. I was "diagnosed" when I was 14, and I say "diagnosed" because I've never had surgery to confirm. My mom had endometriosis growing up and I remember her being in so much pain, and thought it was normal. I got my period at 12 and was diagnosed two years later when my mom started noticing I was missing a lot of school the same time every month. My GYN is amazing. She determined, based on all my symptoms and my mom's history, that endo was the likely cause, but didn't want to do surgery on a 14 year old. She put me on birth control right away to help with the pain/cramps and it worked for a while. I just had a Mirena IUD put in in April and for the first time ever, I was in no pain. Now, only four months later, while the bleeding has stopped, the pain has come back. It's so hard because I sit behind a desk all day, and when the pain hits, I have to just ignore as I'm talking to people or am on the phone. And on top of it all, I can barely have sex with my boyfriend because each time, it feels like my ovaries are being stabbed. It was so bad that it sent me to the ER last week. My doc and I have discussed what to do about the pain. She's given me pain meds to take before sex, which help, but it seems I only have two options - Lupron or surgery. I'm not sure what to do. My mom had three surgeries before a complete hysterectomy and I so don't want to start going down that path at only 22. I would love to be able to have kids someday and my fear is that surgery would decrease that risk! Any suggestions or advice?

lucillegem
lucillegem
Seek alternatives. Do your own research. Doing a hysterectomy does not solve endometriosis. My best advice is DO NOT do anything with your body that you feel uncomfortable with. Whatever the doc or your family or whoever may say... sure they can have their opinions but you should have the last say in what you feel is good for you. For sex, Ive actually went to a physiotherapist (sounds kinda strange) but she gave me a pamphlet about certain positions that maybe more comfortable during sex and she of course said, have open communication with your partner about how you are feeling etc. She said just because we have this doesnt mean we should stop what we love doing (sex, exercise, going out etc). I think we just need to find our own balance and what works for us. I am sorry that you are having pain right now, and I hope you find a solution that you are comfortable with... warm hugs.
drelitz
drelitz
I am in the same boat. I will never try Lupron. I do not know what my resistance to it comes from, but my body and my instincts tell me I cannot handle it. I had a Mirena put in at my first laparoscopy and I love not getting my period. However, hello pain! I think that I am going to get a second laparoscopy. Timing is everything. It would be good now if I can do it. I'm letting my body guide me. This is a chronic illness and nothing is going to be solved overnight, nor is there a magic pill. Unfortunately it is just a really, reallly, really, shitty illness. I know I will take another laparoscopy before I do Lupron. For me 2 weeks of pain would provide me more insight into the scope of my disease rather than 6 months of pseudo-menopause to determine if menopause is a good treatment for my endo. Maybe I will try Lupron someday. Sleep on your decisions. Be in the drivers seat. If it doesn't feel right, don't do it.
MattsMama
MattsMama
Don't feel discouraged. I can only comment on the parts of your story I have personal experience with. Although I have very severe endometriosis (stage 4), my pain is not as unbearable as your sounds like it is. I can tell you that I have had surgery to remove a huge (10cm) endometrioma from my ovary, and my endo was so bad that I also had to have both my fallopian tubes removed....and guess what, I got pregnant (through IVF) after the procedure and have a baby boy. My point is don't be discouraged and scared about surgery. Do your research and find a doctor who understands what having a baby means to you and they will do their best to not compromise your fertility. There are so many options these days with IVF etc. so even when you feel like you're at a disadvantage there is still lots of hope. Please feel free to message me if you'd like to talk more about anything.

Big hugs and best of luck!
Posts You May Be Interested In
  • confessionsofaqueen

    Anti-Depressant

    Posted by: confessionsofaqueen
    Last Reply: SunCloudJD
    3
    The best antidepressant is when my wishes are honored. An example, the faucet in my apartment was running although the knobs were turned shut all the way, and one of the pulling strings on my ceiling fan came off. As soon as I notified my maintenance man, he was quick to reply with the work order. RAPID response... he's getting my services around my apartment done. I appreciate my landlord and...
  • hermi

    Extreme anxiety due to relationship

    Posted by: hermi
    Last Reply: lucillegem
    5
    Hello,so I'm currently in a weird relationship with my long distance ex who I've never met in person and it's taking a toll on me. I've lost 15 pounds and lost my appetite, but I'm really attached to him. We've had a lot of problems and I think that has caused me to gain severe anxiety. I don't know if I should wait until it gets better or what. Everytime I've blocked him, it has tend to make me...