Uterine Fibroids: What's your experience?

Ginger, thank you for that advice - very much appreciated! And for your attention to my situation over the last month. This has been a good source of guidance and encouragement. Thanks again!

@tnabors Years ago (in mid 30's) had issues with fibroids my symptoms were heavy bleeding all month long and pain. Went to several OB/GYN who first recommended a hysterectomy but thought that was a bit drastic given my age at the time. However when I found an OB/GYN who understood and explained what I had we decided to have them surgically removed. My menstrual cycle returned to normal and pain free ever since.

I had the fibroid uterine embolization surgery in October 2021 and I have found that my cycle house became very light which is great however my menstrual cramps are intensified. What do you do in a case like this they wake me up at night and it's not all day mostly at night

Hello @luckielucci and welcome to Mayo Clinic Connect. A lighter cycle is certainly a benefit post procedure but the cramping definitely not.

There was a discussion started some time ago in this same group so you will notice that I have moved your post there to join other members who have shared about their experience with uterine fibroids. Members such as @marjou @gingerw and @mepowers may be able to share more with you.

Are you as active as you had been prior to the embolization, out of curiosity? What are you doing for the cramping?

I’m not sure I’d have too much to add. I had my hysterectomy 20 years ago when I was 41. I kept my ovaries. I probably said it previously, but it was one of the best things I’ve done. I didn’t even know I was feeling bad. I felt so much better after the surgery. My fibroid tumors had my uterus the size of a 4.5 month pregnancy according to my doctor. I can only say positive things about having it done. That said, it’s a personal choice, and I imagine things may have changed in thinking in twenty years.

@luckielucci I also welcome you to Mayo Clinic Connect!

Menstrual cramps can be so awkward, and interrupt our lives, right? I had a hysterectomy January 1999, where they removed one ovary, cervix [previously had been treated for cervical cancer in situ, so they removed it while in there] and large fibroids the size of an 8 month fetus. Prior to all that my cramps were horrible, too.

Getting out to exercise by walking helped, as did Midol like OTC medications, and hot water bottles. To still be feeling discomfort 5 months after your procedure, may warrant a call to your doctor. If the cramps are only at night, think bout how your position in bed, from upright and vertical during the day to horizontal and flat is affecting you. Are you a back sleeper? I'm wondering about gravity and weight on your abdomen.

Let me know if you reach out to your doctor, and what they say.
Ginger

Hello 👋🏻

I’m just trying to see if anyone had issues with fibroids. What were your first symptoms and what helped you? Is anyone gotten a biopsy?

I’m concerned cuz was illuminating on my last PET scan.

Any feedback would be greatly appreciated 🙏🏻 blessings of healing ❤️‍🩹

@lidiana, I moved your post to this existing discussion about fibroids and women's health:
- Uterine Fibroids: What's your experience? https://connect.mayoclinic.org/discussion/uterine-fibroids/

I did this so you can read the previous posts and connect with other members like @2929 @mcmurf2 @zakcat @mepowers @marjou @luckielucci who may have experience to share about first symptoms and what diagnostic testing they had.

Lidiana, have you been diagnosed with fibroids or is it unclear still? Was you doctor concerned about the results of the PET scan or order more testing?

@lidiana My symptoms started with heavy bleeding for most of the month for years then pain. First Ob/Gyn suggested D &C then laparoscopy which showed some of the fibroids. He suggested only a hysterectomy but that was not what I deemed as the only option so I changed Ob/Gyn who gave me other options but told me that the pain would eventually get bad enough that I would drop to my knees which meant surgery. That’s what happened, had surgery to remove only the fibroids (my choice) and recovery went well. That’s my experience.

@colleenyoung thanks for asking 🌼 In March 2022 I got a regular PET scan that showed that I had uptake suspected fibroid (also all my bowels “physiological activity”) but the local OBGYN said that that’s not the best way to identify or diagnose fibroids so ordered a transvaginal US and pelvic area US that wasn’t caught. Them fast forward all this symptoms and new ovarian and MRE identified it and it’s evident. I haven’t compared the images to see how different the fibroid has grown or if it’s correlated to the area of my bladder hypervascular spot. I’m scheduled with a OBGYN surgeon specialized in endometriosis laparoscopic surgery. This was suggested by the urologist just by looking inside my bladder and finding the hypervascular spot at the back of my bladder. I’m really concerned because I’m having the collection of this symptoms that I’m don’t know are all from endometriosis or fibroids:

✅petichiae (the new spot appeared on my nose)
✅severe bone pain
✅ leukoplakia on gums
✅bloating
✅nausea
✅severe abdominal pain low ✅urine or retention
✅constipation or extreme ✅diarrhea
✅breathing difficulties ✅heart rate abnormalities ✅movement impairment ✅syncope
✅hemorrhagic gastritis
✅cyst on brain, neura foramina, ovaries, liver, kidney ✅patchy lesions on bone scans
✅constant high D DIMERs
✅high tumor markers CA 19.9
✅Chromogranin A
✅High cardiolipin
✅positive and negative ANA ✅ speech impairment
✅new massive headaches
✅ neuropathy pain and itching

Hopefully we are getting closer but I did wanted to be treated at Mayo for this with a OBGYN but I understand there’s a process to be referred to Mayo. I just feel that surgically big approaches I would honestly prefer having it at Mayo. It’s just really hard because I’m at Kissimmee. 🙏🏻I’m just trusting the plan for now.