Fibroids: What to do?
Posted , 3 users are following.
Hi, I'm Kimberly and I have fibroids. Sounds like an AA group huh? Well, I am hoping to get support like Bill W's group and a TRUE feeling of the outcomes regarding different procedures.
ME: I am 46! Feeling abdominal heaviness, little pooching/bloating/ heaviness, frequent urination, and painful sex. Just "bulk" symptoms. No bleeding issues. I have a 28 y/o so no more babies for me needed.
Fibroids: 2 fiboids: submucosal (inside) and subserosal (outside). Subserosal or the pedunculated one on the outside= 8.7 x 5.8 x 5.8 cm and 2.2 x 1.8 x 1.9 cm showed on my MRI. Vaginal ultrasound undermeasured them and said I had a 3rd (so it's gone or was never there), hence my MRI demand.
WHAT TO DO? If you go to the GYN or urogyn they want to do hysterectomy. Go to IR and they want UFE (embolization) or US focused surgery which is out of pock cost of NO LESS than $8700 minimum. Everyone wants to push what they do so they can line their pocket with your money. They all say research says removal of the uterus and cervix does not cause sexual dysfunction. But, I know my body and I have uterine contract orgasms that are MAGNIFICANT and they only way I have them that I can tell. So, for me hysterectomy is out. IF hysterctomy was forced I would do supracervical approach so that at minimum the nerves would remain intact!
CHOICES: 1.) Embolization 2.) Laproscopic myomectomy (for the one on the outside) mixed with hysterectopic myomectomy (for the inner one) 3.) Single incision laproscopic myomectomy mixed with hysteroscopic myomectomy. So, what is best? Embolization I hear so much about repeat or regrowth as well as pain with lingering symptom relief since it's still there. The pedunculated fibroids can fall off when they die/necrose and cause infection and pain! Also, what the heck happens to these dead fibroids- nothing dead in the body is good!! Especially if it can be up to 1yr that they are dying. THEN, I really didn't want ANY cuts or punctures on my body at all. But to get this fibroid out immediately but I'm leaning towards the lap myomectomy. Single incision has only one incision, but I am told that it will definitely be visilble in my navel afterwards and if you are vain like me.... it's an eye sore and maybe 3 small laproscopic punctures (1 in navel, 2 below bikini line) that SHOULD heal and are very small might be better (I still hate it scars).
Opinions are begged for at this point. It's all so very confusing and I just really am not sure what to do???!!!
0 likes, 3 replies
christine65130 krmarine
Posted
Hi, I sympathise and agree totally - I have stopped seeing my gynae because ultimately all she wanted to do was a hysterectomy (I have multiple fibroids), saw another one same result. I really don't want to go down that route.
Have you been offered Esmya? May be a non-surgical option for you. I have also seen both positive and negative outcomes from embolization but have no direct experience and don't know of anywhere I could get it done. My fibroids are mostly embedded in the uterine wall so don't think any sort of myomectomy is possible.
i have settled for several courses of Esmya which has shrunk the fibroids significantly but they always grow back and resume bleeding which I find unacceptable as I am post menopausal and really want to be over all this!
So, sorry I can't advise but hope you find a solution that works for you.
UFE27 krmarine
Posted
Hi Kimberly,
I don't think anyone has to read between the lines to determine that you would probably prefer the Laparoscopic myomectomy but are wary/ fearful of the minimal scars, it is part of the course and fades to small appearance of scratches. I have had all the procedures you mention, the myomectomy is the only procedure for me that has reduced the bulk thus far and it has only been 17 days post op. Your belly button may look different but your choice is have a pooch and bulk issues or not, if you were truly vain (which I don't think you are) you would be out of surgery already.
UFE did not work for me, my multiple fibroids were embolised (so successful in that regards) but did not shrink, they hemorrhaged which resulted in heavy bleeding, pain and continued discomfort which continued for 8 months when I finally decided to get rid of them through surgery.
Your chances of new regrowth following myomectomy based on your age group and its a singular fibroid not including your submucous fibroid, is stated at 10-11%, that a 89% chance that you might not have a further new growth. My chances are 26% as I had multiple fibroid but I took the chance. New fibroids can also grow with UFE within 5 years too.
Good luck with your decision.
JVA1 krmarine
Posted
Hi it's a dilemma isn't it....
A long story short, back in November, I was found to have a fibroid measuring 8x8cm posterior intramural which was pushing my uterus into my bladder reducing its capacity by more than 50% hence the bladder pressure and frequent urination, bloating etc but thankfully no heavy periods. My quality of life was deteriorating, I had to stop my gym classes which I loved!
The NHS gynae wanted to put me on Esmya for 3months with a follow up apt in 4mths to discuss other treatments. I read up on the side effects of Esmya and it's limitations and wasn't comfortable taking tablets that were a short term fix as you're not allowed to take them for too long due to long term side effects. Also once you stop taking them, your hormones return to normal and the fibroids grow back!
I booked a private consultation for another opinion which was the best thing I did! Prior to my apt I did a lot of research online about the various treatments and also had two ladies at work who had both followed different paths of treatment for fibroids but ultimately ended up with hysterectomies years later, one a total hysterectomy via keyhole and the other a sub total abdominal op. Both wished they'd just had this done first.
Due to the size of my fibroid and my age being 41 and I'd already had my lovely son now 6yrs old, I decided to have a sub total hysterectomy as I really didn't want to find myself in this same position again in the future. If I'd opted for a myomectomy it would've had to be an abdominal cut anyway as the fibroid is large and I'm a petite size 6! I didn't want to go through a myomectomy and possibly find myself with another fibroid or multiple fibroids in years to come. I also researched UFE and didn't feel confident in that procedure and I understand it's not that successful on larger fibroids anyway. I didn't like the sound of it dying inside me and then waiting for it to disperse.... You may well find some positive experiences online so it can be a useful option for some.
I had my op 9wks ago and I was honestly so scared, I was in tears but I knew it was the right thing so I needed to be brave. The nurses were great and I was up and about with my catheter removed the morning after the op. It was painful getting out of bed but a folded towel with pressure applied against my tummy really helped.
My advice would be to get a second opinion and research all options throughly. Ask yourself how do you feel about the possibility of dealing with side effects from drugs, long term possibility of dealing with further fibroids etc.
Despite being a petite size 6 and having had a large fibroid, my surgeon did an amazing job and I have a tiny incision below my bikini line, looks much better than my keyhole incisions for my appendix op done many years ago!
If you decide on surgery, research your surgeon and make sure you feel confident in their experience etc😉
Good luck