16cm Subserosal Pedunculated Fibroid
Posted , 5 users are following.
Hello all!
So glad I have found this forum. I share a similar story to some of you here. My experience is not over but thought I'd share what has happened to date. I'm 33, married (1 year) and not yet had children. In November last year I was diagnosed with a 16x9cm subserosal pedunculated fibroid, meaning it is attached to the outside of my uterus by a stalk (4cm). Is asymptomatic but I probably knew something was going on back in June when I was attended a yoga class. Doing a move on my stomach on the mat I felt a large hard mass. I had noticed that I was putting on weight and initially brushed it off some organ moving in my body because of weight gain. In august I was laying down on my back and notice a protruding lump to one side. I had a full bladder so again brushed it off. In October I was getting a massage in Thailand and the lady commented on my 'pregnancy' due to a hard stomach and that's what really got me to take notice!
After confirming I didn't have some horrible deadly disease (thanks to dr google) I hauled myself to the doctor and told her I thought I had a really large fibroid. I could not only see it, but feel it with my hand. She immediately shot me down and said that was impossible to see or feel a fibroid. She felt my abdomen and said it was most likely a hernia. I knew it couldn't be a hernia and started to panic. She refereed me for an ultrasound which I had to wait 2 weeks to do. I went for the ultrasound and the operator was really chirpy until she said she couldn't see a hernia or anything. I told her what I felt was a huge hard mass in the abdomen, not under the skin, and so she changed out the head on the scanner machine, then went quiet. When I left she wished me all the best. So of course I was convinced I was dying! Two days later back to the doctors for my results (different doctor) who preceded to diagnose me with a very large fibroid! I was so relieved I actually laughed!
Next step I was referred to the gynecologist, in December. He said due to the size I needed an MRI so they could determine whether it was attached to the top of the uterus, or had a stalk. He also said that I have to have open abdominal myomectomy. I went for the MRI and then attended a pre-surgery appointment with my husband. Thankfully it had a stalk but they also discovered I had a love-heart shaped uterus (affects fertility or ability to carry to term, sometimes). Severity not sure at this point, dealing with one issue at a time. He then told me he wanted to prescribe Esmya to try shrink the fibroid. I have been on Esmya for the last 6 weeks. The symptoms of the meds have been constant headaches, fatigue in the first couple of weeks, and persistent hot flushes that cause a lot of discomfort and sleep disruption. Wednesday last week I had another ultrasound to monitor progress and today I received a phone call from my gyno.
Firstly, so far, the medication has not achieved any shrinkage. I was surprised (and disappointed) as I felt it was less fuller in the area. Secondly, he asked me to immediately stop taking the medication as there has been a medical note issued 20/02/18 regarding the use of Esmya affecting liver function. I now have to go have bloods to check that the meds have not caused any problems there.
So, off to do bloods later this week then my next available appointment with the gyno is in three weeks. This concerns me because he told me previously that the minute you stop taking the meds the fibroid will begin to grow again. But according to his office, he doesn't see an appointment this far away as an issue. I am also told it is not a pre-surgery appointment but rather 'to discuss my medication'. I can see this stretching out for months. I'm wondering whether it is worth trying to get a second option but I live in the small state of Tasmania (aus) and am very limited by choice. It is also getting very expensive.
My thoughts to date is - when it's a big as this, there is no way of getting away from open surgery. I wish I'd just said 'get it out' instead of being really concerned about the scar. Scarring is what made me jump at the meds. Dr told me I would need a cross type cut - both vertical and horizontal. Whether it ends up being that remains to be seen. I have also spent (after rebates) $570 on ultrasounds, $670 on MRI, $120 on doctors, $560 on specialist (gyno), $610 ($1960) on medication to not get very far. Once I was diagnosed I also dropped $2500k on holistic health care. My groceries now cost me double thanks to the new organic lifestyle I follow. I swallow gross herbal potions daily. Meditate. Move. NO chemicals in the house. Haven't made a difference (to the fibroid). On the upside it's probably good I did it to offset any potential liver function issues...
Also, am learning to be more in touch with my body instead of ignoring it! Then perhaps I would have felt this when it was smaller, or at the very least went to the doctor when I first felt something.
Thanks for reading 
0 likes, 4 replies
shell69386 enviromel
Posted
Sorry to read your story. I'm sure most Drs now try esmya to reduce size before surgery. It is concerning that this is now being linked to affecting liver function. I am no surprised there wasn't much shrinkage in 6 weeks as I have heard the meds do not work as well on subserosal fibroids in the outside but more effective on those inside the womb. These are opinions if course. Sometimes longer is also needed like 3 months to see a result but it is unique. I wouldn't expect it would grow again within weeks when stopping eysma if it wasn't having any effect anyway. I have a subserosal and have left it. It isn't as large as yours. When I stopped eysma , I did Reiki and found that has helped me. Depends if you are interested in alternative healing. I wish you well.
kelly89426 enviromel
Posted
enviromel
Posted
Update: I'm day 4 post abdominal myomectomy. The fibroid was made up of two large tumors with two smaller all joined together. It weighed 850g. I have a large cesearean type scar.
I basically went in kicking and screaming - i had talked myself into not needing surgery and that i was going to be butchered and surgery painfull. Turns out I'm just a sook! Reality was that the fibroid was affecting daily life, making me pee every 20 mins, uncomfortable to sleep, impacting sex life and disrupting work travel plans. Surgeon said that it was lucky i did it sooner rather than later as not only was it putting pressure on my organs but it has stretched one falopian tube which had to be stiched back together. As a result it may involve another surgery later. As for pain, they do a good job of doping you up. I had epidural as well as general and i came out cracking jokes. A little painfull a couple of days on but completely bareable. And a scar is just a scar! Things could be worse! I wished i hadn't stuffed around for so long and just got it done. Trust your surgeon! (I'm in Australia)
ammu_katti enviromel
Posted
Wishes for a speedy recovery. I around 47 years old relatively elder and no plan for further deliveries was diagnosed subserosal pedunculated fibroid of 16cm in size (with no trouble but a small feel when i do small exercises in the morning) while I went for a normal health checkup due to my age. I was suggested open surgery to remove my uterus by two Gynocs. Later I wanted to have a final opinion from my cousin who is a radiologist and has rich experience in his field to decide upon my problem. He suggested to forget and get along without any surgery or medicine as you are 47 ( nearing menopause) as long as it doesnt bother you and told it is more common of my age group.So I thought to take up his suggestion and he also suggested to examine after 6 months. Any suggestions from all of you who have an experience of this kind.
Regards and wishes goodhealth