WOMEN: Any women here with fibroids?

Roversyndrome

I just turned 28 last month, and A few years ago, I bled for 6 months and I had a few ultrasounds done, and they find some fibroids on my ovaries. Suggested I go on BC and I did for 2 years. Recently went off it because causing high blood pressure, and made me feel crazy. Lol. Now... my last period lasted 12 days, and this month light pink spotting and all old blood only. My last pap is clear from 2018 as well. I am having pelvic pain again and I just worry about them misdiagnosing fibroids. They never did a biopsy or anything given I was only 25 at the time. I have blood work and a ultrasound booked for November. I’ve lost 22 pounds since June (don’t worry I was trying to lose the weight) I feel a lot better physically.

I am really just looking for women having experiences with fibroids and how they deal with it.... thanks guys

RunsWithBees

Major multiple fibroid sufferer here, although I’ve had treatment for them that I’ll get into in a bit.
I’ve had fibroids since my late 30’s and done a ton of research about them over the years but I’m no expert by any stretch of the imagination so take this as only my personal opinion and experience and definitely consult with your doctors. I must admit the description of your fibroids do not sound to me like the typical location for them nor the typical treatment either. Fibroids are also called Uterine Fibroids because they are benign tumors made up of uterine muscle fibers, hence they are located in and on the uterus. I have never heard of them being located on the ovaries themselves. Could you have cysts or some other growth? Ovarian cysts are quite common. I do have “mild PCOS” so my ovaries do create cysts but they are asymptotic and later get absorbed and disappear.
Anyway, my fibroids caused excessive menstrual bleeding and bulk symptoms. As far as I know from my doctor telling me and my own research, birth control pills will not affect fibroids at all. The only thing that might help a bit with the excess bleeding might be a Mirena IUD but the fibroids had distorted my uterus so much I was not a candidate for it. The IUD might tone down the bleeding but will not help the fibroids go away at all. There are some medications that can temporarily shrink the fibroids but they will also put you into induced menopause. As soon as you stop taking the pills, the fibroids come right back. There are actually very few treatments for this common condition and most doctors suggest a hysterectomy for fibroids that cause symptoms. Actually, hysterectomy is the number one “cure” for fibroids... no uterus, no fibroids. There’s a surgery called a myomectomy where they only cut out the fibroids and leave the uterus but it does scar the uterus, may not be suitable for larger tumors and the fibroids commonly grow right back.
In my case, I was done having children but did not want my uterus removed so I just kind of took a “watch and wait” approach to the fibroids. I tried a medication called tranexamic acid to help with bleeding but it only helped a bit. I lived with the heavy bleeding, anemia and bulk symptoms for years until it got to be almost unbearable anymore. My gyno told me about some newer and lesser known treatments for fibroids but I was not a candidate for some of them due to the size and location of mine. I was however a candidate for a procedure called “Uterine Artery Embolization” or UAE (also called UFE) where they go into your arteries and block off the blood supply to part of the uterus so the fibroids are starved of oxygen and nutrients and die, later over the next few months shrinking to about 40% their original size and they don’t grow back. It treats all the fibroids at once and I got to keep my uterus, it’s not even considered a surgery (it’s a medical procedure) and some places even do it as an outpatient procedure, and I have no scars at all. When the fibroids are dying it can be extremely painful, I had to stay in the hospital for 2 nights so I could get morphine because I had a lot of pain. After that it was about 3 weeks until I felt back to normal and exercised again. The bulk symptoms resolved immediately but the heavy bleeding took about 4-6 months for my periods to get down to normal and now I’ve had normal periods for over a year, it’s been fantastic!
UAE is performed by a special doctor called an Interventional Radiologist who will communicate with your Gynecologist and you must have an MRI before you get it done so they can clearly see the size and location of each fibroid. An ultrasound simply cannot give this information reliably as the fibroids simply do not show up clear enough on an ultrasound, an MRI is the gold standard to see them perfectly. This procedure may not be advisable if you plan on getting pregnant in the future though.
This is what I went through. My gyno said I was the first patient of his to have the UAE procedure and he’s been in practice for decades. I’m not sure why it isn’t more widely known or used to treat fibroids but I couldn’t be happier with the results. I get to keep all my organs, no scars and the fibroids are no longer causing me grief and they won’t grow back.
I hope you get the answers about your condition from your doctors and find some relief of your symptoms soon!

ZeroFriction

Hello, 39 f here, I had been trying to get pregnant for a few years with no luck so I went to fertility doctor and had laprascopy to check out the uterus.. discovered I had a large fibroid and since I had met my out of pocket insurance amount I went ahead and had a myomectomy, where they cut it out c-section style. That was 3 weeks ago and I am feeling better, more energy not sure if that is because of the fibroid bring gone. My period were always normal and right on time. Not sure how it will affect my fertility, the doctor says do not get pregnant for three months because of all the damage that has to heal from the removal. If you are concerned you need to speak to your doctor. I think it is a problem they put off until you are older because of the chance that they will grow back, and most women do not know they have them. I was clueless

yweight2020

RunsWithBees wrote: »

Major multiple fibroid sufferer here, although I’ve had treatment for them that I’ll get into in a bit.
I’ve had fibroids since my late 30’s and done a ton of research about them over the years but I’m no expert by any stretch of the imagination so take this as only my personal opinion and experience and definitely consult with your doctors. I must admit the description of your fibroids do not sound to me like the typical location for them nor the typical treatment either. Fibroids are also called Uterine Fibroids because they are benign tumors made up of uterine muscle fibers, hence they are located in and on the uterus. I have never heard of them being located on the ovaries themselves. Could you have cysts or some other growth? Ovarian cysts are quite common. I do have “mild PCOS” so my ovaries do create cysts but they are asymptotic and later get absorbed and disappear.
Anyway, my fibroids caused excessive menstrual bleeding and bulk symptoms. As far as I know from my doctor telling me and my own research, birth control pills will not affect fibroids at all. The only thing that might help a bit with the excess bleeding might be a Mirena IUD but the fibroids had distorted my uterus so much I was not a candidate for it. The IUD might tone down the bleeding but will not help the fibroids go away at all. There are some medications that can temporarily shrink the fibroids but they will also put you into induced menopause. As soon as you stop taking the pills, the fibroids come right back. There are actually very few treatments for this common condition and most doctors suggest a hysterectomy for fibroids that cause symptoms. Actually, hysterectomy is the number one “cure” for fibroids... no uterus, no fibroids. There’s a surgery called a myomectomy where they only cut out the fibroids and leave the uterus but it does scar the uterus, may not be suitable for larger tumors and the fibroids commonly grow right back.
In my case, I was done having children but did not want my uterus removed so I just kind of took a “watch and wait” approach to the fibroids. I tried a medication called tranexamic acid to help with bleeding but it only helped a bit. I lived with the heavy bleeding, anemia and bulk symptoms for years until it got to be almost unbearable anymore. My gyno told me about some newer and lesser known treatments for fibroids but I was not a candidate for some of them due to the size and location of mine. I was however a candidate for a procedure called “Uterine Artery Embolization” or UAE (also called UFE) where they go into your arteries and block off the blood supply to part of the uterus so the fibroids are starved of oxygen and nutrients and die, later over the next few months shrinking to about 40% their original size and they don’t grow back. It treats all the fibroids at once and I got to keep my uterus, it’s not even considered a surgery (it’s a medical procedure) and some places even do it as an outpatient procedure, and I have no scars at all. When the fibroids are dying it can be extremely painful, I had to stay in the hospital for 2 nights so I could get morphine because I had a lot of pain. After that it was about 3 weeks until I felt back to normal and exercised again. The bulk symptoms resolved immediately but the heavy bleeding took about 4-6 months for my periods to get down to normal and now I’ve had normal periods for over a year, it’s been fantastic!
UAE is performed by a special doctor called an Interventional Radiologist who will communicate with your Gynecologist and you must have an MRI before you get it done so they can clearly see the size and location of each fibroid. An ultrasound simply cannot give this information reliably as the fibroids simply do not show up clear enough on an ultrasound, an MRI is the gold standard to see them perfectly. This procedure may not be advisable if you plan on getting pregnant in the future though.
This is what I went through. My gyno said I was the first patient of his to have the UAE procedure and he’s been in practice for decades. I’m not sure why it isn’t more widely known or used to treat fibroids but I couldn’t be happier with the results. I get to keep all my organs, no scars and the fibroids are no longer causing me grief and they won’t grow back.
I hope you get the answers about your condition from your doctors and find some relief of your symptoms soon!

Thank you for sharing my friend had this procedure as well through Kaiser, she's 51 and like you she is doing g much better since this procedure, I need this procedure but my doctor keeps pushing for a hysterectomy no way. Time for a new doctor,