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I am so grateful that this supportive and informative online community exists. Most of the time I feel like an alien who can't relate to anyone else and I forget that unfortunately there are many others out there suffering like me. I hope by sharing my story I can help someone and hopefully learn something that helps me make the right decision.
I was first diagnosed with fibroids when I was 29. They grew very big very quickly and so I ended up doing an open myomectomy when I was 31. My surgeon removed 7 fibroids and I had a couple of good years before the fibroids came back stronger than before. By 35 I had tried every diet, supplement, and medication (including fibristal) out there and my quality of life had significantly diminished. My surgeon didn't recommend doing another myomectomy (her exact words were that my uterus would end up looking like Swiss cheese) so I decided to try UFE. I had an extremely difficult recovery from UFE (crazy pain, high fever, hospitalized) but it definitely worked and my uterus shrunk by 70% which gave me my life back and I was happy and grateful but it only lasted a year and a half. Now 3 years later I have 13 very large fibroids. I basically just have 5 good days in the month when I feel ok. The rest of the time I'm either in pain, bleeding like crazy, suffering from heartburn, or feel discomfort when breathing. And I'm very careful with my diet (no alcohol, coffee, fried/fast food) as the heartburn gets triggered very easily and keeps me up (and in tears) at night.
So here I am now: 38, single, and a generally petite person (5"3) with a uterus that is 27cmx20cmx10cm so I look at last 6 months pregnant and none of my clothes fit me. I have become extremely anti-social and my friends and family are concerned because they don't understand what's happening with me. I have basically stopped dating because not only I barely feel good anymore, the thought of being intimate with someone feels like torture. A part of me has always wanted kids but another part is just tired and miserable and doesn't care anymore. After 9 years of suffering on and off I think it's begun to affect me mentally as I had never felt this low and hopeless before. I just want this thing out of me and over with - and for the very first time I'm actually considering the idea of a hysterectomy.
My doctor recommends another UFE if I qualify for it. She thinks I'm still too young for hysterectomy (not just because I will lose my fertility but also because of other side effects like earlier menopause) and she thinks either myomectomy or UFE are temporary solutions (I'd eventually have to do a hysterectomy because my body will continue making fibroids) but at least UFE is not invasive and can buy me some time. I desperately want more time but only if I can actually enjoy it. What would be the point of more time if I'm just going to spend it in pain and misury and not even trying to find a partner to have a baby with?
I decided to get some fertility tests done to see if it's even worth preserving my fertility. I think the depressed part of me is secretly hoping for infertility so I could justify a hysterectomy and end the struggle once and for all. I haven't gotten the full results back yet but during one of the exams the doctor said that the inside of my uterus looks surprisingly healthy despite the UFE and myomectomy. Also my fibroids seem to have a very healthy blood flow despite the UFE. It's so ironically painful that I burst into laughter. He couldn't check the tubes and ovaries because they are pushed far up and to the sides and not visible through ultrasound so I'm not sure how much more he can tell me at the final consultation. I don't think I'd want to freeze my eggs (assuming they are still good) if I can't actually carry a baby at some point, which to me feels impossible but you never know. I have an MRI appointment coming up in case I quality for another UFE and I'm also trying to get a tentative surgery date in case.
Is there anyone else out there dealing with a similar dilemma, trying to choose between the possibility of having children one day and feeling like a normal person today? I'd really appreciate any comment, thought, or advice.
Thank you so much in advance for reading and for sharing.
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