Started taking fibristal and its causing cramps is this normal?

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......

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. 

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.

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 

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!

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.

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.