u/JungliBili

This spring I had my 8th myomectomy to try to fix a moderately sized but very stubborn fibroid that was partially in the wall and in the cavity in a bad spot for trying to conceive. In this now almost 3 year process I suffered two perforations, went through an excruciating saline ultrasound, MRI and took a ton of post op meds. This week I was told my uterus has lost its shape and the scarring and damage has made it very unsafe to attempt a pregnancy. I'm also down a fallopian tube because the scar tissue grew over the opening.

Surgeries 1-6 were with one health system and two different doctors, 1-4, sabbatical, 5&6 with her replacement. Surgeries 7 and 8 were with another at a better health system with more expertise, 7 had to be called off after a perforation despite all precautions being taken. The last doctor said she'd never do more than three operations on the same site and the changed shape and scar tissue were likely the reason for the perforations and my terrible experience with a Foley balloon for healing. She was a great ally and helped me understand what had happened and what she encountered. I saw it all myself in a follow up in office hysteroscopy. There's no moving forward.

Now it's the end of the road for me having a biological family. If I were to accidentally conceive I'd be at an unknown increased risk of dangerous complications like rupture, placenta accreta and ectopic pregnancies. I'm likely getting a hysterectomy this year.

I share this to encourage you all to GET SECOND OPINIONS AND GET THEM EARLY. I know that's daunting considering many of us dealt with bad symptoms and shitty answers from doctors our entire lives. That's why I stuck with the first crew so long- that practice was the only one who'd ever diagnosed what was a really disruptive and stressful problem in my life. It seemed like such a simple solution too.

I also want to encourage you to speak up and push hard for straight answers. Ask about what those casual risks they mention really could mean. Press them on vague answers or sappy "I know how much you want to have a baby" responses. You need hard facts. You can't see in there. I think it's hard for a lot of doctors to "give up" or tell someone bad news, but sometimes what feels like "giving up"or "I don't know" is the best choice. It's hard to let go of fertility dreams but what was harder for me is realizing it should never have gone on this long and I've been harmed as a result. I keep wondering how long they would've kept going- presenting more intervention as a good option. We love to talk culturally about how women are "desperate" to have a baby or "willing to do anything" when they're trying to conceive. But we also have a right to know in clear terms if that could mean our safety and lives. Perforations are dangerous. The pregnancy complications I mentioned can be debilitating and very fatal.

I've noticed most infertility support forums focus on ivf and success stories. What about people like me who lost a fibroid battle? I'm not seeing my story represented. I hope if this feels familiar to you you can take some comfort knowing we are out here and you're not alone.

Please share your story if you can relate.

This spring I had my 8th myomectomy to try to fix a moderately sized but very stubborn fibroid that was partially in the wall and in the cavity in a bad spot for trying to conceive. In this now almost 3 year process I suffered two perforations, went through an excruciating saline ultrasound, MRI and took a ton of post op meds. This week I was told my uterus has lost its shape and the scarring and damage has made it very unsafe to attempt a pregnancy. I'm also down a fallopian tube because the scar tissue grew over the opening.

Surgeries 1-6 were with one health system and two different doctors, 1-4, sabbatical, 5&6 with her replacement. Surgeries 7 and 8 were with another at a better health system with more expertise, 7 had to be called off after a perforation despite all precautions being taken. The last doctor said she'd never do more than three operations on the same site and the changed shape and scar tissue were likely the reason for the perforations and my terrible experience with a Foley balloon for healing. She was a great ally and helped me understand what had happened and what she encountered. I saw it all myself in a follow up in office hysteroscopy. There's no moving forward.

Now it's the end of the road for me having a biological family. If I were to accidentally conceive I'd be at an unknown increased risk of dangerous complications like rupture, placenta accreta and ectopic pregnancies. I'm likely getting a hysterectomy this year.

I share this to encourage you all to GET SECOND OPINIONS AND GET THEM EARLY. I know that's daunting considering many of us dealt with bad symptoms and shitty answers from doctors our entire lives. That's why I stuck with the first crew so long- that practice was the only one who'd ever diagnosed what was a really disruptive and stressful problem in my life. It seemed like such a simple solution too.

I also want to encourage you to speak up and push hard for straight answers. Ask about what those casual risks they mention really could mean. Press them on vague answers or sappy "I know how much you want to have a baby" responses. You need hard facts. You can't see in there. I think it's hard for a lot of doctors to "give up" or tell someone bad news, but sometimes what feels like "giving up"or "I don't know" is the best choice. It's hard to let go of fertility dreams but what was harder for me is realizing it should never have gone on this long and I've been harmed as a result. I keep wondering how long they would've kept going- presenting more intervention as a good option. We love to talk culturally about how women are "desperate" to have a baby or "willing to do anything" when they're trying to conceive. But we also have a right to know in clear terms if that could mean our safety and lives. Perforations are dangerous. The pregnancy complications I mentioned can be debilitating and very fatal.

I've noticed most infertility support forums focus on ivf and success stories. What about people like me who lost a fibroid battle? I'm not seeing my story represented. I hope if this feels familiar to you you can take some comfort knowing we are out here and you're not alone.

Please share your story if you can relate.

A story about my fibroid treatment complications ending my journey to have a biological family, and my thoughts on talking to women in real terms about our health decisions.

This spring I had my 8th myomectomy to try to fix a moderately sized but very stubborn fibroid that was partially in the wall and in the cavity in a bad spot for trying to conceive. In this now almost 3 year process I suffered two perforations, went through an excruciating saline ultrasound, MRI and took a ton of post op meds. This week I was told my uterus has lost its shape and the scarring and damage has made it very unsafe to attempt a pregnancy. I'm also down a fallopian tube because the scar tissue grew over the opening.

Surgeries 1-6 were with one health system and two different doctors, 1-4, sabbatical, 5&6 with her replacement. Surgeries 7 and 8 were with another at a better health system with more expertise, 7 had to be called off after a perforation despite all precautions being taken. The last doctor said she'd never do more than three operations on the same site and the changed shape and scar tissue were likely the reason for the perforations and my terrible experience with a Foley balloon for healing. She was a great ally and helped me understand what had happened and what she encountered. I saw it all myself in a follow up in office hysteroscopy. There's no moving forward.

Now it's the end of the road for me having a biological family. If I were to accidentally conceive I'd be at an unknown increased risk of dangerous complications like rupture, placenta accreta and ectopic pregnancies. I'm likely getting a hysterectomy this year.

I share this to encourage you all to GET SECOND OPINIONS AND GET THEM EARLY. I know that's daunting considering many of us dealt with bad symptoms and shitty answers from doctors our entire lives. That's why I stuck with the first crew so long- that practice was the only one who'd ever diagnosed what was a really disruptive and stressful problem in my life. It seemed like such a simple solution too.

I also want to encourage you to speak up and push hard for straight answers. Ask about what those casual risks they mention really could mean. Press them on vague answers or sappy "I know how much you want to have a baby" responses. You need hard facts. You can't see in there. I think it's hard for a lot of doctors to "give up" or tell someone bad news, but sometimes what feels like "giving up"or "I don't know" is the best choice. It's hard to let go of fertility dreams but what was harder for me is realizing it should never have gone on this long and I've been harmed as a result. I keep wondering how long they would've kept going- presenting more intervention as a good option. We love to talk culturally about how women are "desperate" to have a baby or "willing to do anything" when they're trying to conceive. But we also have a right to know in clear terms if that could mean our safety and lives. Perforations are dangerous. The pregnancy complications I mentioned can be debilitating and very fatal.

I've noticed most infertility support forums focus on ivf and success stories. What about people like me who lost a fibroid battle? I'm not seeing my story represented. I hope if this feels familiar to you you can take some comfort knowing we are out here and you're not alone.

Please share your story if you can relate.