BE aware of UFE post symptoms - lost all sexual sensation, I am seriously depressed about it.

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Hello, I am a 49yrs old and for what seems all my life I suffered from heavy periods, it was not until I was in my late 30's I was told I had fibroids after an MRI and ultrasound confirmed it. When I was told about the fibroids the Dr made it seem like it was just part of aging. "Nothing to worry about, they're just part of aging like we get wrinkles or grey hair. It's very common at this age" I thought nothing of it, but like I said I have ALWAYS have had the heavy 7-9-10 day periods since I was blessed with the curse of menstruating at the age of 11. What I did not realize was that tiny grape size fibroids would continue to grow and that they spread. Fast forward to me at 49, three children later, tied tubes after the 3rd child was born in the late 20's and still suffering from heavy, debilitating periods. I was losing my hair, energy depleted, mood swings from dealing with living with a 2 week period every month and its symptoms. I finally went searching to find a permanent solution to my problem with a new Dr. An ultrasound and another MRI taken, confirmed that the 6 fibroids I had were massive, 3 being the sizes of tangerines. I FREAKED OUT!  She has me try an IUD, did not work, moved around in my large uterus, we had to remove it. She strongly suggests a hysterectomy since I am no longer in my childbearing years and it would stop all the problems. I was so terrified about the surgery and all its consequences like the menopause symptoms, bladder issues, sexual misfunction issues that I looked endlessly for another option and found UFE. After several consultations with my Dr, I scheduled the procedure with great excitement to have some relief. 

Surgery went as planned, 8 am surgery w/ an overnight stay. Waking up from the procedure I was immediately sick. I was spinning, extremely dizzy and vomiting whenever I was awake. I am very sensitive to narcotics and was given a very strong narcotic while asleep to help with pain recovery. It was awful. It was so awful that they had to put me on oxygen through the night to help my system clear the drug out. I was hooked up to the IV to maintain my hydration since I could not hold down a sip of anything. I had the catheter inserted all night. FUN CITY!! It was a tough night. The vomiting subsided the next day early in the morning around 9 am and that is when the pain hit me so hard. To describe felt like someone was stabbing me. The sharpest, most intense pain that trickled down my legs and up my stomach and electrified my entire midsection. IT WAS WORSE THAN LABOR! ( I bore 3 large children all being close to 10 lbs, in a 105 lb original body frame that eventually led to C-sections due to babies size and still, the pain form this procedure was more intense) It actually felt like constant labor pains, the way the back and legs hurt. I had to stay monitored and have my pain pills every 5hrs on the dot or else the pain was unbearable. Then the painful consequence of taking pain meds and lack of movement for 24 hrs hit and the constipation was awful. The urge to go was definitely there but nothing was moving. I even ate very light food a couple of days beforehand anticipating it hoping that it would help but it took me an entire 5 days to actually pass a BM. That was awful for me since I kept telling myself it was the pain pills that were doing that to me so I tried not to take as many but then the pain was so unbearable I had to take the meds in order not to feel like I was being stabbed in the gut. That is where I believe I made my mistake. I refused to take the strong pain meds prescribed, the Percocet. I was prescribed Percocet every 4-5 hrs and the 500 ml of Ibuprofen every 4- hrs or as needed. I refused to take the Percocet at all because of my constipation and fear of pain pills, they make me ill and sleepy. I now realize that if I did take both meds as prescribed, I would not have been in such pain. I just wanted to know how I felt and what my body was feeling and how it was healing and I just did not want to numb myself and not know when I was truly better. It took me approx 17 days for the pain to finally subside completely. This is while faithfully taking the Ibuprofen as prescribed. The days after the surgery I was passing tissue constantly, large masses of tissue that would just come out while using the restroom. I found that sitting on the toilet and letting my body have time to let everything come out was best. I was afraid that I would get an infection if all that would not come out. It was gross, large tissue masses along with blood clots. I took it as a sign that the fibroids were dying as they should and were exiting my body. After the 17 days the pain stopped and I was overjoyed not to have to be on the ibuprofen. The continuous spotting and pieces of tissue still passed for 30 days or so here and there so I was always wearing a pad. It was not heavy, it was erratic here and there throughout the days. 

FIVE WEEKS AFTER SURGERY is when I decide to have sex. I am still lightly spotting and that is when the fear struck me. I was having what seemed to be a PMS symptom. My breasts were extremely tender all of a sudden, my nipples hurt so badly that the slightest touch hurt, my bra was uncomfortable. That is the only symptom though, no cramps, no bloating or period. I was missing intimacy with my husband after 5 weeks of no sex, sex is a very important part of my happiness and stability. Being with my husband had a way of balancing me and it was almost a daily part of my life, at 25 years of marriage its always what kept me happy and I needed it and when I finally felt my body was healed. I had sex and instantly was horrified at the lack of sensation. I could feel he was inside me but the electricity of sexual arousal was not happening. To describe it would be like when you go to the dentist and you know and feel the touch on your face from the pressure only but not the sensation. It scared me and now 3 months after the surgery, I am still numb. I cannot reach a climatic orgasm, just a very short, outer clitorial tiny orgasm that is best achieved with oral sex and not with intercourse. Nothing at all to what I used to feel before. I also lack any desire what so ever, my body does not react to excitement. I do not feel any arousal at all and I am devastated and so sad and so frustrated that I do not know what to do. I have emailed my Dr. (I also would like to remind everyone that a gynecologist does not perform the surgery. My gynecologist did not perform it, it was a radiologist who performs the surgery. The only time I ever felt this numbness was during the awful experience I had with the 3-month birth control shot Deprovera. She told me that sometimes numbness can occur for 5-6 months post surgery. THAT IS WHY I AM HERE POSTING THIS LONG STORY HOPING SOMEONE CAN RELATE AND THAT THEY EXPERIENCED THIS AND IT GOT BETTER WITH TIME. I am hoping to hear from someone telling me that the sensation will return. I am absolutely terrified that somehow the surgery and the blood blockage to my uterus affected my ability to reach orgasm forever. 


I also wanted to note that I have not really had a period since the surgery other than 2-3 days of very light spotting when I should have had my period. It's so odd for me not to bleed all I have to use is a panty liner now, that what is happening. So as far as the bleeding it is gone, not sure if I am going into menopause now?? I am 49. I got tested on my FSH levels before surgery, and was told I was nowhere near it, my mom lost her period at 56. So the procedure I guess did do what it's supposed to?? Going in next month for an ultrasound to see how much the fibroids have shrunk. I am praying that in time I will feel again, and am horrified at the mere notion that I may never again. WHAT HAVE I DONE IF THIS IS FOREVER!! sad  Please share any insights to this if you can relate.

Thank you for your time.

0 likes, 15 replies

15 Replies

  • Posted

    Hello Terri,

    I read u,am 49,fibroids still,sorry I hv not gone through this process,..mine is to encourage you to try n be positive that all will be well,at that time,try to forget about fibroids n try not to be listening to yourself like “will i get climax?” Set yourself free...

    Why I say this bcz I had thought am already menopausal n I could not climax,but with time as I set my mind free at that moment,I realized how enjoyable it is,but once I start thinking..maybe fibroids r touched or things like that,am off balance...

      I wish you the best hopefully someone who has done that surgery will talk to you..

       Smile n play shoulder high 😊

    • Posted

      HEllo ,

      A year post op and nothing has changed, if anything it has gotten worse. It's hard to feel smile and fake it all the time without it affecting your mood eventually. I have always been an easygoing and pretty happy person but this has been a mental downer in my physical relationship for sure. Hard to set my mind free when there is no physical connect to my sensation nerves. It's like do you enjoy eating delicious food if you can't taste it? Or smelling flowers if you can't smell them? It's gone and I had a very active sex life and now it's simply just not there physically.

      Thank you for the support/reply and aim at cheering me up but I just want women to know this can happen. I am searching to see if it has happened to anyone else or am I the 1%?

  • Posted

    Hi Terri, so sorry you were experiencing this. Has there been any improvement? I am set to have an UFE in a couple of months and just want to gather as much info as possible. Thanks.

    • Posted

      Hello Tracy,

      I am 8 months post op now. Still no sensation 😦 , if anything it has gotten worse. I used to have clitoral sensation, that now has also been affected and I seem to have lost about 75 % sensation there now too. I have contacted my Dr with several emails and she prescribed an estrogen cream to "resensitize my vagina". I have yet to try it, it says it causes weight gain and PMS symptoms as side effects so it scares me a bit. I had all my hormones tested. I also had an ultrasound and my Dr confirmed I am still not in menopause. Levels show me not even close and I now am 50. I have no menopause symptoms. No hot flashes, no insomnia , no mood swings, but I did gain weight 4 months post op surgery. ( It prompted me to get back to gym and I now have been diligent with my workouts and walking so I was able to lose some of the mid section bulge but not all of it!! I used to weigh 128 lbs with a slight tummy bulge before surgery and got up to 144 lbs 😦 ) My period pain is non existent now and I have energy like I have never experienced before!! I do feel better as if my surgery worked but fear that they must of blocked blood flow to my ovaries & uterus that must of affected my sensation. I now know that it has to be due to the surgery not menopause since I have no menopause symptoms and my hormone testing proves that. I no longer have heavy periods!! I only have 2 days ( Max ) of super, light spotting during these past months. I do have slight PMS symptoms days before my period like the tender breasts, and a tiny shock cramp here and there but that is all. NO MORE HEAVY PERIODS, NO CRAZY CRAMPS & HEAVY FEELING in my uterus, NO ANEMIA !! YAY!

      I got a bit depressed afterward about the numbing and it still gets me scared and sad.. 😦 I have very open communication w/my husband and he tries so much and it breaks my heart how this has left me when it comes to that. If I think about it too much it sends me into a very dark place mentally so I fake it a lot to pacify him & to pacify my myself. I am going to give this a year post op to see if anything improves, if not I will become much more vocal w/ my Dr to help me know what went wrong.

      I hope this does not confuse you. I just want women to be aware of what has happened to me and I reached out here in hopes that someone would tell me it happened to them...and eventually got better. Unfortunately no one has. 😦

      BEST OF LUCK w/your journey to better health, I hope you have a great outcome, everyone seems to have such different experiences.

    • Posted

      Dear Terry, thank you for your response. It breaks my heart to read it. It seems clear to me that your are right and the problem is a lack of blood flow to your clitoris and vagina caused by the embolisation. It's the most logic explanation. I have read that sometimes the blocking particles can travel and affect other organs. Not sure if the estrogen can help with that, as your ovaries seem to be working fine. What you need is the equivalent to Viagra lol, as it's all about blood flow... Are there any exercises that could help? I'm thinking stuff like Kegel but designed to increase blood flow to the area. Or applying heat before? I don't know... Sorry, probably silly, but just of the top of my head.

      Your husband sounds lovely and supportive.

      I know it's not a consolation but I've had 17 years of painful intercourse since giving birth (something to do with the scarring). Yet my clitoris works just fine and what has happened to you would be the last drop for me! Moreover, one of the reasons I want to avoid hysterectomy is that I've read it can affect sex life and sensation.

      Whilst your lack of sensation doesn't seem to come up often in these threads, I am starting to see a trend in weight gain after UFE and not being able to shake it off. It makes me really worried about it. I am 114 lbs, so very slim and still fitting in clothes I bought twenty years ago. So I guess I've been a bit spoiled! But that's just me, I can't imagine myself any different. My mum teases me that I will put on weight during menopause which makes me so mad coz she's secretly wishing it. Ah, mothers.

      Your renewed energy and absence of other fibroid symptoms is great though. Something to celebrate! Thank you again.

  • Posted

    @koko12 I am so sorry to read about your experience. How are you feeling these days? I am 47 and have 15 fibroids, one of which is 11cm. My symptoms are just heavy periods, but not bad at all. However, these fibroids could double in size by the time I hit menopause and so I'd like to get them out now. Ugh. Trying to decide between robotic laparoscopic myomectomy and UFE but your experience makes me feel wary about UFE. With myomectomy, there is a risk of adhesions.

    • Posted

      if i could do my time over id just get the laproscopic myomectomy, i had ufe ive definately lost sensation during sex i have 0 libido but i didnt have much of one before if im to be honest. its difficult to become aroused a loss of electricity is spot on. But i can still climax just not from penetration alone. fibroids did shrink but some have calcified and become heavy on my bladder so i have to have myomectomy regardless. pre ufe i had 17 fibroids largest 8 and 7cm now i have 9, largest 6cm. UFE is okay if you dont want children and your happy to go into early

      i wish you all the luck figuring what is beat for you

    • Posted

      @larika thanks so much for your thoughts on this. i'm so sorry that you also lost sensation with UFE. i talked to my radiologist about it and he reassured me that this shouldn't happen because he is careful to go past the cervicovaginal branch, but i now realize it CAN happen and will be wary of it.

    • Posted

      @missmeow has the UFE worked for you? Has anything changed in sensation during sex or libido. I am waiting for my UFE appointment but reading these comments really scared me and im also wondering if i should just go with laproscopic myomectomy.

  • Posted

    I had UFE 2 years ago and it has affected me the very same way. The doctors try telling me it's unrelated to the procedure and that it could be age related... I'm 47 and had zero menopausal symptoms prior to the procedure.

    I was hoping to maintain fertility and now I feel dead inside. I have zero sex drive, depression, mood swings, and thoughts like, "what's the point of living?" run across my mind too often for me to ignore.

    The nurse told me later that I wasn't a good candidate for UFE due to the large size of my fibroids, but the doctor had decided to see what would happen with me. Never once asked me if I was interested in becoming a case study. I search every single day for news that UFE can be reversed because I want this substance out of my body. I'm scheduling a myomectomy and I'm praying that the surgeon will be able to remove it all, bringing me back to something close to normal.

  • Posted


    I had my UFE on the 30th of Oct and I think this has happened to me. I have a clitoral orgasm which is small but not the internal one.

    Did it return for you?

    • Posted

      No - never. 5 yrs later nothing. Drs refused to ever admit anything was done. Blamed it on me. I had my gynecologist check me and she basically did a pap test and a poke here and there, I don't think she believed my sensual loss - when she was asking me if I felt this or that and each time I said no my heart broke. I lost the ability to feel passion and want . I was very sexually active and to lose that part of me is devastating. I still cry. I would gladly take the 2 weeks of heavy bleeding back to be able to feel my husband again. i can go on and on about the emotional stress it still causes me. I'm angry now. I don't believe this can be reversed.

    • Posted


      so sorry.

      • i knew as soon as the 6 week wait for sex - I felt nothing.
    • Posted

      Did they do an MRI to see why your having no sensation? Was any explanation given!? This is happening to me too the loss of sensation but if it's nerve damage nerves do repair themselves. Are you in Australia like me?

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