I want to create this group for women who are diagnosed and treated for fibroid at a younger age far from the menopause and never had kids but wish to have kids sooner or later.
Most of the other groups have information from women who are facing this issues after kids or closer to menupause so they have more options for treatment. Hence this group is for women who wish to have kids after fibroids.
I have myself been diagnosed with fibroid which is quite big in size (greater than 11 cm). My age is 32. Never married or had kids. But would like to have kids in future.
I know from previous scans that it is a fundal fibroid. But I am waiting for an MRI appointment to find out the exact location of my fibroid. It could be that now I have more fibroids on other than fundal area.
My sympotoms do not include heavy bleeding fortunately (so I hope it is not a submucosal fibroid). But I do feel a lot of pressure and fullness in my pelvis which makes me really uncomfortable.
For now the doctor has prescribed me with Esyma course. I am in the fourth week now and I feel much better already because the pressure is way less in my abdomin now and I do not have to rush to the toilet that often. Otherwise I do not feel any side effects. Most likely because I got used to them.
I am really looking forward to the MRI to know more about my fibroid and the further treatment the doctor will propose. I do not want to go for an invasive treatment but considering the size of my fibroid, I think I will be suggested one. Whatever treatment is advised, I want to have my uterus intact.
Have you been in a similar situation? Please share your experience. What treatment did you consider? Did you have a baby afterwards?
Or if you are going through similar situation now, please share what options your doctor has proposed.
I am 26 and had an open myomectomy to remove 5 smaller fibroids 4 months ago. My surgeon advised I had an open myomectomy as 1. I had no children and may want them in the future and 2. Some Other options available are relatively new treatments and it is unknown how they will truly affect fertility. My recovery wasn't as painful or long as I had imagined and it has been successful so fingers crossed it will continue to go well
Hi Ki2290, Thanks for sharing. Do you mind sharing how big your fibroids were and where they were located? inside the uterus or outside?
i think they were all external apart from one which had pushed through the womb wall. The biggest was 6 cm and smallest 1-2 cm.
Hi Samy
I think this forum is an excellent idea, thank you!
I am 30 years old. I was diagnosed with fibroids in 2014. At that stage they were 1 cm/2cm and was put on ''watchful waiting''. As the years passed on, my periods became extremely heavy and painful. I was/am chronically anaemic, wasnt able to be active, hair kept falling out, the works. And then one day while I was on holiday in Cuba, I had my period. This period almost killed me! I was constantly bleeding with no breaks, full on clots. TMI At one point I was sitting on the toilet seat just letting the blood and clots gush out of me, because at that point I was filling up my maxi pad every 20mins. I started to see stars, became dizzy and collapsed. I was hospitalised in Cuba and given a blood transfusion to be able fly home. When I returned I was hospitalised again and given another transfusion because I was stil too anaemic. Worst days of my life! Before this episode I was against having surgery and was looking for other non invasive methods to manage the fibroids. I tried most things: tranexamic acid, progesterone only birth control, norethisterone(this provided some relief), ibuprofen with codeine, clean organic eating, losing weight, reducing stress. But after that day in Cuba, I immediately made the choice that I wanted them removed ASAP! So I have been booked for a myomectomy via keyhole (hopefully) at the end of this month. The doctor also put me on a 3month Zoladex injection to stop my periods in the meantime. I am nervous about the op but looking forward to getting rid of these. I have 3 fibroids, they are 6cm, 4cm and 2cm and they are all in the muscle of the uterus. I currently have a fiance, I have no kids. We have a desire to have kids within the next 5 years. I am afraid of the fibroids growing back, so will be looking for non invasive ways to manage/reduce growth of any more that may come back.
Zoladex: this drug is meant to stop your periods, make your fibroids shrink however its meant to give you menapausal symptoms.
ESYMA: I was informed reduces the flow of your period over time and shrink your fibroids.
FIBRISTRAL: Is another drug, but I heard its only ued in the U.S. correct me if I am wrong.
These are the only drugs I am aware of as far as non invasive fibroid management.
All the best to all of you ladies
Qx
As far as i know Esyma and Fibrastel are the same drug , they just have different marketing names in different countries.
Hi there, this is a great thread. I've shared questions/story before but i'll give a complete story here. I'm 31 (boo), single and want to have kids in the future.
I first found out I had a fibroid in October 2016. I had been feeling a hard bump in the mornings for a while and wasn't sure what it was; thought I needed to poo or was getting fat(ter). haha. My periods had been getting pretty crazy heavy for the months before and I would ask friends about whether their periods were getting heavier with age, but I think I was just in denial that something was seriously wrong. Eventually it got to the point where I was bleeding through my pants often, and would wear a super tampon and pad to protect myself. I later found out that I was anemic and all of a sudden my constant fatigue made sense. I have lower back pain and when I bend it hurts a lot. I also get sharp pains on my right side when i bend to my left side.
When I went to the dr, the first thing she said was "you're pregnant!" which was not possible at the time. And then she said "it's a tumour". In those 2 seconds everything froze, I left my body and I lived a lifetime of panic in an instant. She quickly told me it wasn't cancer and to calm down. But followed that with "Go get tested quickly or you'll die". Geesh, talk about scaring me into action!! I mean, bless her, she was exaggerating to get me to take it seriously, but I guess if I kept losing that much blood for much longer, I could have seriously damaged myself!
Anyway, had an ultrasound the next day which confirmed a 11.5cm subserosal fibroid.
Back in October Esmya wasn't in Australia yet so my gyno told me to wait for it to give it a go before thinking about surgery. There was no arrival date so the next few months were agonising waiting for it. My symptoms got worse, bleeding worse, fatigue worse, pressure pains worse. I think between August to January it was growing rapidly. Waiting has turned out to be one of the hardest things to deal with this past year.
Went on Esmya for 3 months and my bleeding stopped, and the pressure stopped. I was convinced it was working because I felt like my stomach was smaller. Unfortunately, there was no change in size. The dimensions changed a bit, but I think that's just different view points from different scans. In fact, the longest measurement was now 12 cm and my uterus also grew by 3 cm during the 3 month treatment so it was now about a 5.5 month pregnancy size.
Initially, I had hoped that if Esmya didn't work I'd have the myomectomy straight away. Unfortunately I had a serios neck injury and surgery was too dangerous in April. So more waiting. By May I got approval from my neurosurgeon to go ahead with the surgery and I was super excited to get it done.
Then by gyno told me he wanted me to go on 9 weeks of Synarel medication as pre-operation. I was devasted because it was more waiting. More time lost. It'll be basically an entire year lost to this stupid alien growing inside of me. I was on Synarel at 17 years old for 6 months to treat Endometriosis and it was a horrible experience. I couldn't believe I had to relive it all over again.
I'm now on Synarel and I'm constantly fatigued; not just tired, but fatigued. I have no energy and I'm very emotional (but it's been a tough year). I get hot flushes like crazy and they consume so much energy! I've been bleeding everyday for the past month. It's not heavy like a normal period, but more than spotting. Like 1 full pad everyday.
I'm scheduled for an open myomectomy on August 4 and I can't wait to get this over and done with. I wish I could go back to October 2016 and do the surgery back then. At least I would've been recovered and this would've been a memory by now.
I'm doing a CT scan and ultrasound next week to see how much it's shrunk. Synrael is pretty effective at shrinking them, but it's only temporary. It'll also be interesting because it was initially so big, they couldn't see much else of my uterus. So I'm curious to see how many others there are now that it'll be smaller and we can see better.
My gyno has warned how major the operation is but there aren't any other options and I can't live like this. I don't think I've ever read a comment or post by anyone that regrets having surgery.
Anyway, that's my story, minus all the tears.
Hi I had 5 fibriods removed I fell pregnant but loss the babies, one in the 2nd trimester and d 2nd in the 1st trimester. The miscarriage clinic said it was d fibriods, I tried to see if I could get non invasive treatment but that didnt work, I used esmya (which is also known as Ulipiristal acetate or fibristal) for three months before surgery but it never worked, I am only a few weeks post surgery. Largest fibriod was 11cm and smallest was 4cm
Hi Jess
Wow you've been through a lot. I am at a similar stage as you mentally where now I just feel like these damn things need to leave my body! I have had enough. I guess we will be in recovery around the same time. My myomectomy is scheduled for 31st July. Best of luck to you hun xx
Hi Godneverfails
Hope your recovery is going smoothly. Do you have any tips for the recovery process after a myomectomy. I'm due surgery in 3 weeks time and I'm a little anxious.
All the best to you and your journey x
Hi queen,
I was really nervous as well, I think its normal, but it went well I was in hospital for 5days, stick to regular pain killers and take ur time in recovery. I wish you all the best
Hello Word
Thank you for opening this forum, it's the best idea. I am 33 years old and I live in Quebec. I have no yet children, it is one of my most cherished wishes. My English is very weak, but I will even try to share my experience with you.
There was a time when I felt very tired. I no longer tolerated any effort. At the slightest effort I vomited. I had a lot of throbbing in my head, as if my heart had moved in my head
I told myself that this was probably normal since I had managed many things during the year. At the time I had noticed that I had heavy bleeding and this for almost 10 months. One day I decided to go to the hospital, because this tiredness did not end and increased, I hardly ate anything.
The doctor prescribed to do blood and urine tests to make sure I really have iron deficiency because of these symptoms. I did my blood test at 8 am and went to work.
At 1 pm the doctor called me on my cell phone. He told me that I had to go to the emergency department right away to have a blood transfusion; I had a very severe anemia. My hemoglobin was 41 g / l, while the normal rate was 143 g / l. Do you see what in phase I was ?????
That night, I received 4 pockets of blood, and the next day my rate had gone up to 77 and the Doctor stopped the transfusion. After several diagnoses, it turned out that I have uterine fibroids, which have generated this anemia gradually!
I met a gynaecologist who prescribed the Fibristal that I have taken since June 19, 2017. The first catch during 3 months, I will take a break of 2 months, in the fifth month, I will start another catch for 3 months. I also take jamp ferrous sulphate to treat my anemia.
I make a regular blood test, I did one on June 29th, my hemoglobin was at 110 today, the next blood test is for July 17th. In 6 months, I would have a meeting with my gynecologist for the situation.
Since the night, I have a lot of energy; there is really improvement about my tiredness. But I can not tell you about my fibroids. The future will tell us. This is my story.
Dear, Jess, when you talk about your tiredness, I understand you and I know what it is. I deeply share your pain.This is one of the causes that prompted me to share my experience with you. When you tell your story I see myself a month ago. Be courageous, it will go well.
With all my compassion, Lana
Take care
yes , I confirm! I am taking Fibristal
Hi Godneverfails,
Thanks for sharing your story. Hope you are keeping your spirit high and recovering well. Keep us posted about your situation.
Hi Queen,
Thanks for sharing your story.
So did you finally get a date for your myomectomy?
Hi Jess,
How are you now? and how did your ultrasound go? Did the fibroid shrink? If yes, how much?
I wish you good luck for your surgery.
Hi Lana,
That was really low hemoglobin. I am glad that it is getting better for you.
Also, it looks like you already know that you will continue with non-invasive treatment after the first 3 months. What is the size of your fibroid? Didn't your gyno suggest to go for a surgery?
I wish you courage and lots of energy and optimism to go through it.
Take care,
Hi All,
Thanks for encouraging the idea of initiating this discussion. I hope we all can support each other in the best way.
As I shared earlier have a big fibroid (hoping it is only one) and the surgeon has put me on Esmya since mid June, I have now received a date for MRI, 5th September. My Esmya course will be over on 3rd september. So I hope to see a smaller fibroid on the 5th. Meanwhile I didnt get my periods but I do get a lot of hot flushes specially during sleep. I can still feel the size of my fibroid quite big but I do not feel so much pressure on my bladder any more. So I am really hoping it is smaller in size.
In my case I do not know if the surgeon has given me Esmya as a pre-op medicine or he wants to put me on Esmya for longer. So far I have read in different discussions on this forum that Esmya shrinks the fibroid only 33% in size. My fibroid was about 16 cm so it can possibly go down to 12cm. So I am really curious what would the surgeon decide about my case. I will book an appointment with him on a date after my MRI on the 5th september.
I really want to have some time in hand between decision of the surgery and the surgery itself. Because I live alone and I would need to invite someone from my family to stay with me during and after the surgery and the visa process may take some time. So this uncertainity is worrying me.
Thanks again everyone for sharing your stories and supporting each other.
Hi Samy,
Its scheduled for next Monday morning...getting nervous now