Started taking fibristal and its causing cramps is this normal?

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Hi. I'm a 49 yo woman that is tryin to avoid a hysterectomy at all costs. I've been suffering with severe fibroids and my period stopped approx 1 yr ago. A large fibroid inside my uterus is present even after going through the change and the doc went directly to me having a complete hysterectomy. I wanted to try to avoid that so he has put me on fibristal (Canada).

Day 2 and I've got cramps...like cramps I haven't felt for a long time and I'm wondering if this could be normal due to the fact the uterine lining is changing and things are happening in there? They're moderate cramps not severe.

Any experiences on firbristal would be greatly appreciated! Thanks!

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  • Posted

    Hi Deee, I Have taken 3 courses of Esmya, which I believe is the same as fibristal, and I have never had cramping, in fact it usually takes several weeks before I've seen any effect......

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    • Posted

      It's weird eh? I'm thinking maybe it's bc I haven't had cramps for so long and I'm not used to them anymore? I do truly believe I see a difference already in the size of my tummy and I'm hoping the cramping is bc it's shrinking ??? I don't know. I don't want surgery so I'll have to bear it for now. I'm really really banking on this drug to work!

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    • Posted

      I'm so glad I didn't go to the hospital as I was contemplating the other day!! They prob would have whisked me right in for emergency surgery to take my organs haha

      I am day four now on fibristal (esmyra) first round and I am feeling a twinge of burning in there but no cramps! No side effects so far and I am ALOT less bloated. Tummys feeling a bit softer now and I can run and play with my dogs again bending down for the frisbee with ease.

      I am shocked this isn't prescribed more!! I'll me posting here to keep a log of progress, good , bad or indifferent smile

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    • Posted

      Hello Christine,

      Did your fiborids shrink with Esmya and by how much?

      I am 3wks into my first course of fibristal. I am really hoping they shrink, but it appears the results both drugs highly vary.

      I wonder what the intervening factors could be?

      Cheers!

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  • Posted

    Hi,

    On fibristal (also in Canada), I didn't have side effects that were too bad. It did have my period stop with that med  (age was 50 at time) during the second month of use. I think cramping is one of the possible side effects. Fibristal didn't shrink my very large fibroid -- however, later trials of zoladex has shrunk it a little bit. I have heard that fibroids shrink a little with menopause, but not necessarily too much. I still expect to have my large fibroid after menopause. One can try a fibroid embolization to try to get some shrinkage as well. Many people on this list have reported on their experiences with UFE. 

    Best wishes. 

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  • Posted

    Hi, I was wondering how you are doing on Fibristal now?  I just started taking this week.  Am 54, excess bleeding and severe cramping for the last year or so.  I have a fibroid the size of a small plum, a polyup and a couple little cysts all causing an enlarged uterus.  That an age is what I'm told.  I'm not happy about it but I do not want surgery.  So far no side effects that I know of.  I do have a stinging sensation in the front of my calf at ankle height.  Not sure it is related.  I am in Canada as well.  Don't really want to take this medication but I get so scared with the excess bleeding and the cramping for three solid days each month.  Funny thing was I didn't have this problem since gynaecologist gave me a trial pack I started this week and just got my prescription filled.  The cost - thank God my medical covered it.  Three months was $1,150.  Who could pay that.  That's why so many people suffer.  Pharmacist said there are no known problems with taking this medication but that blood clots are a possibility.  Weird that that isn't a side effect listed on the medication sheet they give with the prescription.  I will check on the stinging sensation when I run back to the drug store.  I'll keep a watch on here to see how others are doing.

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    • Posted

      I am also in my 50'S and my fibroid are the sizE of a 4 Mos fetus. I can't bend or do sit ups without feeling that ball in my tummy. I have heavy bleeding. At times I have to set my phone alarm to go off every hour b/c I will bleed thru my tampon and pad into my clothes or in my bed. I take 300 mg of iron every morning and every night.

      So far I'm on my 3rd week of Fibristal. Exeriencing some break through bleeding this past week as well as hot flashes. Doc said I wouldn't have any side effects....he's so funny. Not.

      Fibroid only shrink 30% thru menopause. The only option I have ever been given was hysterectomy. My dr is confused as to why I want my uterus. When he agrees to be castrated I'll think about hysterectomy.

      I found that fibroid can be destroyed using focused ultrasound. Only 1 hospital in Canada does it and 14 hospitals in USA do it. I had my gyno refer me for the treatment. But he warns me that medical treatment isisual for those in child bearing years.

      Be aware that fibroid grow back!

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  • Posted

    Thanks Dee for sharing your story and starting this thread. I'm 41 from Canada and have been trying to find alternative ways to shrink my uterine fibroid and avoid a hysterectomy.

    My story: Dx with a 4.5 cm fibroid 7 years ago and told I needed a hysterectomy. I still wanted the option of having children at that time so I said no. A year later it doubled in size and 3 years later it doubled again. Now the fibroid is 18cm x 20cm x 22 cm.

    I found out 3 years ago I was post menopausal and I have since then dealt with the grief of not having children. Today, I want my body back! The hard growth in my abdomen affects me emotionally and physically and prevents me from moving forward in life.

    I have a history of sexual and emotional abuse as a child and cancer in my mid 20's. I have addressed the post traumatic stress from these life events to the best of my ability with amazing resources. For this I am grateful.

    My experience so far with western medicine has been very disappointing. If I don't do as I'm told (ie. have a hysterectomy) then health care services will be with held. My GP will no longer see me, I have gone through 3 specialists and when I go into a walk in clinic, they will not refer me to a specialist unless I agree to have a hysterectomy. The ability to have choice and exercise self empowerment is important to me.

    The specialist I see currently has heard my story and can offer me a hysterectomy. He's a surgeon, he shows compassion and this is wonderful.  I understand the fibroid is large at this point (the largest he has seen) and has recommended me take Fibristal pre-surgery in hopes of shrinking it. Fibristal is normally prescribed to pre-menopausal patients, not post. I am post.

    Long story short, my question is, and I haven't seen any success stories on forums as of yet regarding Fibristal...is there any?  So far I have seen excitement and hope leading up to said outcome with quite a few experiences with side affects that are uncomfortable enough for women to stop the drug mid way through the 3 month designation. 

    At this point, for me, Fibristal alone will not solve my problem. Surgery is pretty much inevitable but any shrinkage could allow for a less risky surgery (ie. damage to ureters and bladder). I'm looking at major abdominal surgery, vertical incision (possibly past the belly button) and 6-8 weeks recovery time.  I'm scared.

    Has anyone (or anyone you know) had success with Fibristal?

    Let's keep this thread going and support each other - Thank you 

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    • Posted

      I mentioned earlier in the thread that I am also on Fibristal. I'm requesting that my GP send me for another ultrasound so that I can find out if the fibroids have shrunk any.  If they have not, I will call my Gyno and make another appointment to request a different hormone therapy.  This all takes months.  I might not like it, but it is the system we live with.  

      I have also been offered a full hysterectomy since I was 24 yrs old when I was first diagnosed with Endometriosis.  I have remained adamant that I don't want any hsyterectomy. Yes Endometriosis causes debilitating pain, but I found a support group - adjusted my diet and exercise routine.  I went thru hormone therapy ($750 a month for 3 months) and it went into remission for 3 years.  I persevered.   Older Endometriosis is not as painful.  By the time I was out of remission the pain was only enough to make me walk bent over, not drop me to the floor.

      I am wondering just how many women with Endometriosis develop Fibroids?  Considering how Hysterectomy happy doctors are, there are likely few women that kept their parts to compare notes with.

       

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    • Posted

      Hi,

      I am currently 3 weeks into fibristal to shrink multiple fibroids. Largest is 9cm. Side effects have been very mild excerpt occasional hot flashes and mild fatigue. My belly still looks the same (size of a 5month pregnancy), but am hoping to see some shrinkage, although results on this drug seem mixed and varies. My gyno said I'all have to do two courses to see noticeable shrinkage. My intent is to shrinkage them, try and get pregnant then consider surgery.

      It's not much, but I hope it helps.

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  • Posted

    Hello Dee,

    I am 3weeks into my first fibristal treatment. I do experience occasional cramping, but nothing that has required medication so far.

    My belly still looks the same, so I don't think there's been any shrinkage yet but am really hoping that's happens.

    Hope this helps!

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  • Posted

    I've been taking Fibristal for three weeks.  First I have to say the pharmacist stressed watching for blood clots.  Said there were really no issues regarding this medication with other users and that it takes a full three month dosage before any changes would take place.  The day after starting Fibristal I had stinging/burning in the front of one leg down at ankle height and on the same side, a nipple itching like crazy.  I did not have any hot flashes but did have a few headaches.  At first I didn't relate either symptom to the Fibristal.  But, it never went away.  I called our 811 number to talk to a nurse and, of course, Fibristal is not familiar to the average nurse/doctor as yet.  No real help there other than to keep watch and get checked out by a doctor.  So, I went to the walk-in the next day as I was paranoid by then.  The doctor was not familiar with this medication so looked online and said these symptoms were not listed so didn't see any reason to stop taking it.  I did stop for two days and then started again.  So, three weeks later I still have this all happening.  I did feel twinges like before the medication, kind of  aches I guess you would call them.  So, three weeks later I decided to call the gynaecologist office.  Talked to one of her assistants.  She advised to stop the medication and she would speak to the doctor and would get back to me.  That was four days ago.  Haven't heard anything yet.  I have stopped taking Fibristal and still have the burning/swelling feeling in my leg but not as much and the itchy nipple has stopped totally.  I would like to make sure there is nothing wrong with this part of my leg before I would take it again.  And my concern is what happens now, will the period kick back in and when and how bad.  So, on edge yet again.  I only have one fibroid that they say is not growing and was the size of a small plum three years ago but have a polyup and a couple little cysts in there.  I'm 55 so menopause should be kicking in and I don't know if it is or not.  I have definitely gained weight.  Haven't done as much exercise as I found anything I did that involved bending caused spotting.  I do have a scheduled appointment with the gynaecologist end of January.  Takes two months to get in there so this was already scheduled.  My doctor that I have seen for the last thirty years is of no help.  I hate feeling this way of not knowing what is happening to me or what will happen.

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  • Posted

    I have been on Fibrostal for 5 weeks now.  Initially there was some cramping, but my bleeding stopped by day 4.  At which time the hot flashes started.  During the 2nd week there was an aweful smelling brown discharge that looked like old blood.  It only lasted about 3 days. Every time I bent or crouched the pressure put on the tumours would gush blood out.  I can tell that they have shrunk a little bit, not sure how much.  But I am getting booked for another ultrasound to see what progress has been made.  I might not get the results until the end of Feb. 2017.  But I am hopeful.  My goal is to shrink the fibroids and hopefully be accepted by the only hospital in Canada that does Focused Ultrasound to destroy the fibroids.  I want to keep my uterus and ovaries.  Hysterectomy is not an option that I want.  

    My doctors have not been up to date with a few of the newer techniques being tried and used.  It is really up to me to stay on top of things and find reliable information.  I thought that embolization was perhaps an option, until I found out that the patient has to deliver the fibroid vaginally.  Mine is too large to deliver.  I was advised to use ablation, but the uterus has to be a nice shape.  Mine is totally distorted.  So that option is gone.

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