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Fibroids, heavy period and need some support
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10-16-2015, 07:31 PM
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Posts: 160
Hysterectomy:
Ovaries: Kept 1 or both
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Re: Fibroids, heavy period and need some support
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Originally Posted by puddingtonbear
Hello, MJ!
How was dinner?
The first thing I want to say is "wow." You're waiting so long for your UFE! Like LifeForce, I feel thankful that my process is going relatively quickly. I'm so sorry that you have to put up with your symptoms for so long. It's a good thing you have a supportive husband. I do too, and I think we're lucky.
The scheduler called today! I found out that I will not be a candidate for the HIFU trial, so I can cross that off my list. I have an appt with doc #4 next week, when I'll find out if UFE really is an option for me.
My fibroids aren't big. The last ultrasound identified 5, of which the largest was 2.5 x 2.3 x 3.0 cm, though several doctors, including #4, think I have lots of smaller ones in addition. I think that's why #4 suspects, at this point, that UFE may not work well for me; I have too many "marbles" for them to try to cut the blood flow to. Does that make sense?
As for meds, I just started a lo-dose BCP, so we'll see if that makes an impact on the bleeding. Doc #4 suggested the Mirena IUD, but my regular OBGYN thought it wouldn't work well because my uterus is ... hmmm, lumpy, I guess, for lack of a better word.
So you must have started the Fibristal again? I hope it kicks in soon. I hope you get to see the radiologist soon, too! It sounds like the waiting period should be almost over for you.
(Cue fight song....)
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Dinner was good! We ended up going out instead and I got some beef vindaloo...yum! Having a supportive husband is definitely a blessing. And, yup, I started Fibristal again. It's only been five days but I've gone from super heavy (a pad an hour or so) to a half a menstrual cup. I should be in the clear again in a few days, thank goodness!
That's too bad about you not being a candidate for HIFU, but at least you know that's off the list now. It does make sense why they don't think the UFE will work for you...I guess it depends on the number?? I hope you get some definite answers about that next week.
What's BCP? I was on a few other drugs (hormones and tranexamic acid), and those didn't really do a whole lot for me. The TA helped a bit, but more to make the flow consistent than to reduce the amount (if that makes sense?). Interesting that your doc thought Minera wouldn't work because you're too lumpy. My OBGYN in Ontario suggested that too, but I didn't want to bother because I figured it would just get ejected during a "flash bleed".
MJ
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10-19-2015, 08:34 PM
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HysterSister
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Posts: 300
Hysterectomy:
Ovaries: Undecided
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Re: Fibroids, heavy period and need some support
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Originally Posted by MenorrhagiaJuli
Dinner was good! We ended up going out instead and I got some beef vindaloo...yum! Having a supportive husband is definitely a blessing. And, yup, I started Fibristal again. It's only been five days but I've gone from super heavy (a pad an hour or so) to a half a menstrual cup. I should be in the clear again in a few days, thank goodness!
That's too bad about you not being a candidate for HIFU, but at least you know that's off the list now. It does make sense why they don't think the UFE will work for you...I guess it depends on the number?? I hope you get some definite answers about that next week.
What's BCP? I was on a few other drugs (hormones and tranexamic acid), and those didn't really do a whole lot for me. The TA helped a bit, but more to make the flow consistent than to reduce the amount (if that makes sense?). Interesting that your doc thought Minera wouldn't work because you're too lumpy. My OBGYN in Ontario suggested that too, but I didn't want to bother because I figured it would just get ejected during a "flash bleed".
MJ
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Oooh, beef vindaloo sounds good!
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10-19-2015, 08:50 PM
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HysterSister
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Posts: 300
Hysterectomy:
Ovaries: Undecided
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Re: Fibroids, heavy period and need some support
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Quote: |
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Originally Posted by MenorrhagiaJuli
Dinner was good! We ended up going out instead and I got some beef vindaloo...yum! Having a supportive husband is definitely a blessing. And, yup, I started Fibristal again. It's only been five days but I've gone from super heavy (a pad an hour or so) to a half a menstrual cup. I should be in the clear again in a few days, thank goodness!
That's too bad about you not being a candidate for HIFU, but at least you know that's off the list now. It does make sense why they don't think the UFE will work for you...I guess it depends on the number?? I hope you get some definite answers about that next week.
What's BCP? I was on a few other drugs (hormones and tranexamic acid), and those didn't really do a whole lot for me. The TA helped a bit, but more to make the flow consistent than to reduce the amount (if that makes sense?). Interesting that your doc thought Minera wouldn't work because you're too lumpy. My OBGYN in Ontario suggested that too, but I didn't want to bother because I figured it would just get ejected during a "flash bleed".
MJ
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Sometimes I hate computers. Let me continue ... what were we talking about? oh, yes, dinner!
Has the Fibristal had its impact? It must be a relief!
Well, I just found out I may actually be a candidate for UFE, after all. I have an appt with doc #4 on Wed, so I guess I'll be asking a lot of questions. Have you heard anything from the hospital about scheduling your appt?
Oh, BCP is birth control pills. I'm a little worried about how I'll react; I've reacted badly to oral progesterone before. But, if it keeps the bleeding under control, I suppose it's worth a try.
I hope this week is even better than the last for you! Keep up with the great dinners. ;-)
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10-22-2015, 07:33 AM
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Posts: 160
Hysterectomy:
Ovaries: Kept 1 or both
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Re: Fibroids, heavy period and need some support
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Quote: |
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Originally Posted by puddingtonbear
Sometimes I hate computers. Let me continue ... what were we talking about? oh, yes, dinner!
Has the Fibristal had its impact? It must be a relief!
Well, I just found out I may actually be a candidate for UFE, after all. I have an appt with doc #4 on Wed, so I guess I'll be asking a lot of questions. Have you heard anything from the hospital about scheduling your appt?
Oh, BCP is birth control pills. I'm a little worried about how I'll react; I've reacted badly to oral progesterone before. But, if it keeps the bleeding under control, I suppose it's worth a try.
I hope this week is even better than the last for you! Keep up with the great dinners. ;-)
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Haha! Computers can be such a pain sometimes.
That's great you may be a candidate for UFE. What did doc #4 say?
The Fibristal has been a joy. My period has stopped entirely, and hopefully it doesn't come back except for a bit of spotting (which is what I've had in the past when I was on it).
I'm not a fan of oral progesterone either. I was on Vissane, which made me a moody b for a few weeks, and didn't help with the bleeding at all. Fingers crossed your BCP does something good for you!
Still no word on my UFE. I talked to my OBGYN's assistant and she said to call her at the end of the month if I don't hear from the hospital by then. She said she was worried they may be slowing down on appointments because the radiologists might be preparing for Christmas vacation. So I guess if I'm lucky they'll get me in for November...otherwise, I should have enough Fibristal to get me to January.
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10-23-2015, 07:49 PM
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HysterSister
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Posts: 11
Hysterectomy: November 12th, 2015
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Fibroids, heavy period and need some support
You are totally not alone!!! I've had the same issue since I first started my periods at 12! I'm 32 now, and finally got a second opinion back in July. After having 3 kids, it just got worse. My OB out me on Lo Loestrin Fe, and my bleeding has gone down quite a bit from what I was experiencing. But still, I have underlying conditions that make it worse. My new gyno has me taking the pills non stop until my surgery next month. I still bleed a bit, but nothing like it used to be. I haven't had a period since he told me to take them without the break for a period. Talk to your OB about trying a birth control pill. In my case, it helped me. I was willing to try anything! You joined an amazing support network here I signed up not even 2 weeks ago, and have received nothing but love, compassion, and understanding. Welcome! Hope you find relief soon! You are not alone.
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10-26-2015, 06:16 AM
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HysterSister
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Posts: 5
Hysterectomy: December 14th, 2015
Surgery Type: TAH/SAH
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Re: Fibroids, heavy period and need some support
I have been heavy bleeding for 8 months was suppose to have a hysterectomy 5 years ago but doctor cancelled it the night before because I am obese and have a mesh from hernia repair.
I finally just can't take the bleeding anymore went for ultrasound I have fibroids cervix cyst a simple hyplaster from 5 years ago that I was never told about,so new doctor did a uterun biospy in office it was horrible I thought I was going to die the pain was intense. I have had biopsy before this was really bad, the doctor said there I took out enough so your bleeding will stop now ......... nope just made it worse.
She was adamit that I have a mirena put in I said no I am bleeding through every med you have given me I want a hysterectomy and soon she said well your very over weight so I won't do it I will send you to a huge hospital and have them deal with your weight but I doubt you will get any help till you lose weight.
Really hard to lose weight sitting on the toliet or with 4 pads on and in severe pain. I left there just sobbing I am so tired in so much pain and nobody gives a ****. I am 49 she said just hang on for a few more years it will stop at that point.
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10-26-2015, 01:48 PM
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HysterSister
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Posts: 300
Hysterectomy:
Ovaries: Undecided
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Re: Fibroids, heavy period and need some support
Hey, ThorH.
MJ has mentioned she's tried hormones, so I assume she's tried birth control pills. I just started taking them, though, and I hope I get good results from them. I'm glad they're helping you! Good luck on your upcoming surgery.
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10-26-2015, 02:03 PM
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HysterSister
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Posts: 300
Hysterectomy:
Ovaries: Undecided
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Re: Fibroids, heavy period and need some support
Hi, Lori J,
Wow, you're going through a really rough time! I'm so sorry.
It sounds like you're with a new doctor ... but it also sounds like maybe you should find another one? A more sympathetic one? Ask friends or family if they have any doctors they like, but please don't give up trying to find one who can help and whom you feel you can trust.
I have read posts from other women here who talk about being very overweight. Some of their doctors have had issues with their weight, and some haven't, which leads me to believe that their reactions depend quite a bit on how much experience they have with overweight patients (and maybe a bit on their biases...). Maybe you could post a question, asking overweight women here what their experiences have been with getting help from doctors?
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10-26-2015, 02:31 PM
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HysterSister
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Posts: 300
Hysterectomy:
Ovaries: Undecided
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Re: Fibroids, heavy period and need some support
Yay, the Fibristal is working for you!!! Gosh, I hope you hear from the hospital soon. That would be a great Christmas present. :-)
Ha! I was pretty moody myself the last time I was on oral progesterone. My husband was so happy when I stopped taking it, and so was I. Actually, it was a bit scary to see how it impacted me emotionally. My regular OBGYN (#1, as opposed to #4) once told me that, given any woman, he could find a dosage of progesterone to make her unhappy.
So far, the BCPs haven't bothered me, which is great. But I don't know if they're helping yet. I'm perimenopausal and my periods are way unpredictable. I'm keeping my fingers crossed, though!
So, Doc #4 suggested I have a few options. For right now, she thinks I should try the BCP at least 3 months, and if they work, then I'm set. Otherwise ... the MRI seemed to show that one of the fibroids was sorta submucosal. She thinks that's probably the one that's causing the bleeding issues, and it might be able to be removed hysteroscopically, which should help. Then afterwards I could have a Mirena inserted, or do a UFE to treat the remaining fibroids. Or, I could do just the UFE, without the hysteroscopic myomectomy first, though then I run a risk of having draining for a long time; I guess the submucosal fibroids can do that. Ugh.
I'm pretty happy to hear I do have some choices. I'll stay on the BCP for right now and I'll probably talk with doc #1 about the hysteroscopy.
Glad to hear you're doing better!
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10-26-2015, 05:02 PM
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Posts: 160
Hysterectomy:
Ovaries: Kept 1 or both
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Re: Fibroids, heavy period and need some support
My goodness, ThorH! I can't believe you've been dealing with this since you were 12!
Thanks for the tip about a birth control pill. Unfortunately, that stopped working for me over two years ago...it was one of the first drugs my doctors put me on. It worked for maybe 2-3 months to keep things under wraps, and then it slowly didn't really make a difference.
The support network here has definitely been amazing. I've only been here a few weeks myself, and the ladies have been great.
Good luck with your surgery next month! I'll keep an eye out for an update from you...hope it all goes well!
MJ
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