Second UFE or Hysterectomy? 38 with no kids and 13 fibroids
Posted , 9 users are following.
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.
0 likes, 10 replies
nyawira Niki1313
Posted
i will keep it short.
5 years ago i was in the waiting list to remove my uterus 🙉 .my uterus was full of fibroids..but i decided to get a second opinion and i got an operation to get fibroids out..
i have 2 babies now..am heading 40...
so i can relate...dont give up. search for 2nd 3rd opinion and you never know
sarah81110 nyawira
Posted
Wonderful news there is hope for us all... xxx
sarah81110 Niki1313
Posted
Hello Nikki
I am 44, had my first open myomectomy this february and they removed over 25 fibriods, and dissolved a cyst. My opinion is that I had have these fibroids for most of my adult life, and I think the damage to me has already been done, but I live in hope and I put it into Gods hands. However, I am no longer in pain and i can lie on my tummy, but i and my partner will have fun in our sex life and we see what happens. Your healthy blood flow is they are feeding on our blood, the more we give the more they want!! I had this issue before my surgury, and funny enough, since my myomectomy , my periods are heavy with blood clots but this part of my recovery. Children - I can hope but I thank God for my life and I am not in pain, he wants me to have fun and enjoy life and thats what I am going to do!!!
You are still a normal person - but we all have to live and die by our choices and the possibilitity of things we cannot change, but listen to your body and mind, and I am sure you will do whats right!!
Indyhoosier41 Niki1313
Posted
Hi Nikki,
first off I want to say I'm sorry you're going through all of this. I had 10 fibroids and two of them were rather large. I myself went the route of the UFE. it lasted maybe 3 months tops and I had relief. my symptoms came back and I felt awful again. I did the UFE a second time which was only about about 6 months after the 1st one. they figured since one of the blood supplies wasnt cut off from one of the bigger fibroids it will work a second time. same thing and worked for about 3 months this time. I don't have any kids at my age and I am 44. I got tired of feeling disgusting and always in pain. I decided I need them to come out. August 5th I had. laprascopic hysterectomy. kept the ovaries so I wouldn't get thrown into menopause. this was completed with the da vinci robot. I was terrified going on. I went home the same day. stayed in bed for 2 days and went back to work a week later part time. at the 3rd week I'm back full time. I was surprised I had no crazy pain. I had more pain with the UFE. highly recommend avoiding another UFE. to get those things to stop growing and more coming, I took everything out except the ovaries. much love for what your going through.
missy26092 Niki1313
Posted
Hi Niki1313,
My sister had fibroids and cysts, as well as polsystic ovaries and she now has a healthy baby in her early forties. Poor baby had to fight the fibroids for food. But now baby is so big and healthy! I guess all i am trying to say is that you can still have healthy kids even with fibroids. I think the main issue at hand is that living with them is awful.
I am sorry you are experiencing discomfort...its so tough fibroids are awful and I wonder why there isn't a permanent solution to them yet or why a cause hasn't been found in order that we can prevent them.
I personally found that esmya is quite helpful but I see that you said you tried Fibristal already...
I heard a vegan diet might help but I never tried this?
Wishing you all the best, please dont give up hope xxx
nyawira missy26092
Posted
i was put on Esmya for 6 months..3 pre and 3 post operation..and before then i was on zoladex for 3 months..tough huh.but worth it. you mention diet....i tried to go vegan.and iron rich foods. and juices and kinda helped
acohen1216 Niki1313
Posted
Hi Niki1313!
I'm so sorry to hear what you're going through. I went through something similar and identify with the feeling of feeling alone in the struggle...but either fortunately or unfortunately, you're not. I had an open myomectomy when I was 27 to remove several very large fibroids that made my uterus the same size as someone who was six months pregnant. Unfortunately though, they came back just as large and when I was 29 I had a second open myomectomy. The doctors didn't think I was a good candidate for UFE because of how quickly they grew back. Both myomectomies though had complications and took a toll on my body and definitely my mind. After the second open myomectomy, they grew back just as large again, and I had a laparoscopic hysterectomy in 2018 at 31. The doctors thought that even if I were to miraculously get pregnant, I would have a lot of complications when carrying because of the hit my uterus took from all of the surgeries. Having a hysterectomy was the best decision I ever made! I also didn't have kids, and I think it was hard for people to understand my decision sometimes...but I was the only one who knew the pain I was going through every day and knew how much fibroids were affecting my life.I'm also small frame (5'0", 105 pounds), and to not feel confident in your body because of something that is totally out of your control can take such a toll on you. The only fortunate thing for me was that I had always been somewhat indifferent about having kids, but even still, the hardest part was just not having the ability to decide myself whether I wanted kids or not - my body decided for me.
I'm sharing my story though not as a way to say that this is the solution for you but as a way to say you're not alone because I know how lonely this all can feel...especially when you have multiple fibroid treatments. I would just say that I hope you come to a decision that is right for YOU and gives YOU peace of mind - not family, friends, doctors, etc. Despite what people think, "toughing it out" is not something that is an option with large fibroids. I hope you come to that perfect decision for you 😃, and feel free to reach out if you have any questions!
fofa45101 Niki1313
Posted
Thank you for sharing. I had fiberiods for only 7 months and they altered my life. I can't imagine living with them for 9 years. You are a hero and brave.
My experience and my sister's heightened my awareness of what maternal health is about. Fibriods should be part of that. I want to talk a bit about the feelings part: sharing news about female reproductive life revovles around children. if you are pregnant it is news you share it. If it is a myomectomy, hysterectomy or miscarriages you just don't share it.
I felt trapped when I was diagnosed. Part of me knew i won't be able to get pregnant right away, i am not the best shape, I am a doctoral student trying to achieve 10+ dream delayed because of lack of resources, eat whatever is cheap and constantly having mental health issues, depression and anxiety.
In the west people are secretive about their feelings, in my culture women who have issues of infertility are also secretive, but for different reasons.
I am now recovering from my myomectomy, trying to have a positive outlook to life but I know once they come back and the whole issue of bleeding and aniema, I will contemplate the extreme solution.
I pray that you will be guided to the right solution for you. And regardless to the choice, I am sure there is away to make life meaningful and to thrive.
barbara91702 Niki1313
Posted
Hi, I am so sorry for the dreadful pain and debilitating condition that fibroids cause, I am older than you and am lucky enough to have one child but like you for many years I lived with the life altering pain, bleeding, dragging feeling in my lower stomach and thighs, breathlessness, pushing upward feeling in my upper stomach........ and all the other stuff that I am sure you know all about!! Firstly let me say what you decide is such a personal journey and has got to be right for you, others can tell you their decisions but some will sit better with you than others. I tried several things including several months of Esmya which did help a little at first, but in the end I was on morphine to deal with the pain,family life, work etc was suffering! As I was in my early 50's I was hoping for the menopause to come along but alas mother nature did not play ball and after tests it showed it was not on the near horizon! I made the decision to have a hysterectomy but leave my ovaries, the best decision for me and I am feeling better than I have in years, two years down the line I only regret I did not do it sooner! One thing I would say is I had a slight blip as still got heartburn quite regularly and started getting breathless again, turned out the meds I had taken had affected my gallbladder and after a small op to remove that, oh wow do I feel even better!! I can wear white (and do very often!) And feel like I have my life back for the first time in years! It took me so long to make my final decision as it is not something anyone does lightly but was lucky enough to find others to talk to and also found out that others in my family had also had to have a hysterectomy as fibroids seem to run in my family (others had tried removal, but they always came back worse!), not ideal........ but eventually worked for me!! I wish you well and hope you find your solution as life is for living (not in constant pain) and I hope you find your pain free way!!
take care Barb xx
sakura26 Niki1313
Posted
Hi I also have a huge fibroid and am much older than you and debating surgery. I've had many doctors suggest hysterectomy based on my age. But I also have read articles saying they are now finding your uterus actually produces hormones and is useful even if you don't have children. I think the question for you is options. If you want the option of still having a child, then maybe you should go for UFE again. Perhaps find a better tech this time. If you are okay giving up that option. I know some women have no choice but hysterectomy. But if you have any choice, personally, I'd take it and keep hysterectomy for a last resort. My fibroid is giant and painful and I've tried herbs, ulipristal etc etc but am looking into myomectomy as I've never had one. I also have a dermoid and docs keep wanting to remove but they threaten my ovaries and the dermoid isn't bothering me. There is supposedly a great doc in LA who can do complex cases laproscopically. Not sure where you live.