Shrinking fibroids. Is it painful? Esp if adhered?
Posted , 6 users are following.
Hi
So I've been diagnosed with an unusual fibroid. It's been called a bizarre, complex fibroid with endometriosis that's growing out of my uterus completely filling the pouch of Douglas. It was last measured in July at 13cm and previous to that, it was 7cm 2 years ago, so it's growing steadily. It's fully encapsulated but there's a 7cm lesion within it that is blood filled and another part that they're unsure of. They don't think it's malignant. And they also think some of it is endometriosis. It looks like it might have adhered to my sigmoid and possibly my ovaries.
The consultant (general gynae but specialises in oncology) admitted it was very unusual and its been difficult for them to diagnose. They have suggested I have a 6 month trial of zoladex (chemical menopause) to shrink it and then 'we'll see'. I'm not happy with the unsure diagnosis, and the cancer question not being answered so I've decided not to start on zoladex until I know more. I've asked to see the endometriosis specialist so I'm just waiting to hear back about that (it's a long story that I'm trying to keep brief).
While I've been going all this with the drs, I decided to try some natural approaches. I've started using bio identical progesterone cream and serrapeptase. I'm now on my 2nd cycle of using this and I'm feeling a lot of things happening. I'm just trying to work out if this is a positive sign or not.
My main symptoms are extreme chronic fatigue and severe lower back pain. I also experience abdominal bloating and abdominal pain, however this is more intermittent and less troubling than the fatigue and lower back pain. I dint have any bleeding issues. My periods are light and short. Since starting the cream, my back pain has increased significantly, to the point that it is now constant and an intense. I am also experiencing very unusual abdominal sensations of pulling sharp pains and the feeling of things moving, especially around where I think my ovaries are.
I was wondering if anyone else who's successfully shrunk fibroids has experienced this? Does it just when they shrink?
I'm also wondering if anyone has experienced fibroids being adhered to parts of their body and what happens when they shrink?
Any info would be appreciated! Thanks x
0 likes, 15 replies
janelle_23976 bettybetter
Posted
Hi i have gone through the shrinking process and sorry to say i have had some of those symptoms. plus what doctors dont tell you is that one of the side effects of zoladex is depression. i had to be taken of cause of the depression. it works but for me the side effects were to much.
bettybetter janelle_23976
Posted
Yeah, after researching zoladex, I was not keen to try it. That's why I wanted to try a natural approach first and something that I could just stop if I couldn't tolerate the side effects. The the at worried me most about zoladex was that its in your system for so long and if I didn't like it, I'd need to wait until it was out my system. All the consultant told me about it was that it was a 'tiny injection' and nothing to worry about. I couldn't believe it when I looked into it.
Jennn bettybetter
Posted
I am 6 weeks post open myomectomy of an 18cm 1.5kg subserosal fibroid. my fibroid caused urinary incontinence, pressure, pain, pregnancy like belly, fatigue, infection and the rest for 12 months. I commenced zoladex for 3 months in preparation for surgery to reduce size of the fibroid and ease my symptoms. I was so anxious as id read all the side effects and horror stories but i have to say i found it amazing! Symptoms eased and my belly reduced in size after the first month. I got to a point before the zoladex where i felt that everyday activities were too difficult and i wouldn't have been able to continue like that. I had some night sweats and nausea for the first week or two of zoladex but after that i felt great. I wouldn't hesitate to having it again if needed. Hope this helps xx
bettybetter Jennn
Posted
That's great the zoladex helped. I would use it if it was part of a plan for surgery like you but I was just offered it as my only treatment, with no plan for afterwards.
It's interesting you mention infection. I've been so ill, mostly with fatigue and just generally feeling awful. How did you find out it was causing infection?
Did you get this car through general gynae? I was initially discharged from gynae 2 years ago as they said my symptoms were not gynae related and fibroids couldn't cause my symptoms. It was only though being referred to orthopaedics and having an mri that they saw the full nature of this crazy fibroid mass inside me and now they are saying it is the cause of my symptoms. But they aren't offering to remove it because it would likely involve a hysterectomy. It honestly feels like they don't have a clue.
Jennn bettybetter
Posted
They found it last September when i was pregnant, as i was having pain and bleeding. my right ovary was next to my naval and my cervix was stretched over to the left of my abdomen. At the time it measured 12x13cm and they weren't sure what it was even after u/s and mri so at 7 weeks pregnant they did key hole and realised it was a fibroid. I miscarried 4 weeks later and haemorrhaged due to the position of my wound. I had a 2 week cancer referral for a further scan and mri three months later as it had grown to 18x14x13cm instead of shrinking after the pregnancy. I was told to have a hysterectomy because the hospital i was under didn't have the expertise to do a myomectomy. Finally had it removed in Newcastle and still have my womb and ovaries thanks to the amazing team they have.
Before i had the zoladex i was so run down and unwell due to the fibroid putting stress on my body. The mri had shown back pressure on my right kidney, which caused back pain. I also became unwell one day at work feeling hot and cold, this lasted over the weekend and when i went to the drs and had bloods checked it showed that my white cell count and inflammatory markets were all raised, my neutrophils were high, suggesting dead tissue was being absorbed in my body, dr said it was most likely fibroid degeneration leading to infection. The pain was so bad i had to lay down until it eased. I had two lots of antibiotics and codeine which helped and bloods improved. Dr advised starting the zoladex asap to help ease the symptoms and it did. Problem is that if you have the zoladex without a plan to follow then the fibroid or endometriosis will come back with a vengeance.
bettybetter Jennn
Posted
Thank you so much for sharing all of that. You've been through so much!
I feel the drs have been so dismissive about the fibroids and its only now that it's a total mess inside me that they're even acknowledging there could be a medical cause for my symptoms. I know my white blood count has been off quite a few times over the years I've been unwell so I might ask to get that re checked.
One of the recent mri reports suggested that the chaotic bit of the mass that they're not sure about could be due to some degeneration.
What you've said about zoladex is exactly why I've not started it. It didn't make any sense.
I really hope you've managed to recover from everything you've gone through.
wadiya90162 bettybetter
Posted
hi bettybetter,
I personally have not experienced a fibroid with endometriosis but I have had a fibroid shrink after childbirth. It is uncomfortable and does come with a pulling feeling but it feels more like when a hemorrhoid shrinks not increasingly painful. I also work in a GI office and I would say you should consult your doctor and see if they can do another ultrasound. You should not shrink the fibroid on your own if there is a possibility that it has adhered to another organ especially your sigmoid colon or any portion of your colon. When the fibroid shrinks it may detach in a way that can perforated your colon. This may causes sepsis and irreversible damage to you colon. Worst case death or colostomy bag for life. Please contact you physician and let them know what your doing so they can tell you if it is safe enough to continue.
good luck with everything.
bettybetter wadiya90162
Posted
Thanks for replying.
I agree with what you're saying about the concern about the adhesions. The thing is, the zoladex the dr prescribed would shrink the fibroid but at a much faster pace, so although I am doing it alone, I am just doing a more natural version of what the Dr has recommended. I was too scared to try zoladex because of how long it's in the system and if I had a negative side effect, I would need to just wait until its out my system, or take even more hormones to counteract. What I'm doing is really quite tame in comparison. Which gives me all the more concern over my consultants ability to manage my case (I've requested a second opinion).
I've recently had 2 mris and a ct scan and they've scheduled a follow up in Dec.
I'm just hoping I get the second opinion soon.
tawana68 bettybetter
Posted
hi thete , i went through a simular type situation as yours but not exactly the same .
I had extensive bleeding for 6 weeks straight but didnt find out the cause of it till they did a transvaginal scan and also a CT scan.
they found a polyp and also a 13 cm thickened uterus and 2 fibroids and a cyst.
they did a biopsy and it came back normal and then i was put on a medication called fibristal .( a newer medication in canada here to shrink fibroids) and within 4 days it stopped the bleeding thank god cause nothing else worked that they tried . i took that medication for 3 months straight and it worked for me .going through peri has brought on all kinds of symptoms that has affected me somehow and i just try to deal with each one , one day at a time. i know its hard and scary , but theyll figure it out so hang in there and keep positive . hugs to ya and remember your not alone . we all are here together .
shanice33793 bettybetter
Posted
i have had mines shrunk and its not painful when you get the procedure but after you be in slight pain and that's all and it grows off blood. so getting then shrinked it cuts off the blood supply to the fibroids
dm2136 bettybetter
Posted
Hi Betty, i had a large fibroid that had me in a&e as the sucker started to degenerate, was totally out of the blue though looking back I had symotms for a while. I had zoladex for 3mths then had abdominal hysterectomy. Was told woukd need lateral hysterectomy if didnt attempt to shrink as fibrois so large. whether it was zoladex or fibroid I exoerienced all side effects you mention. lethargy and back pain the worst. ZOLADEX worked well so i got away with a horizontal hysterectomy, hope it works well for you!
bettybetter dm2136
Posted
Thanks for replying.
Did you take the zoladex and then start to have these symptoms & end up in A&E? I'm hoping so much that what I'm experiencing is this beast breaking down and I'll eventually start to see some benefits. I've been ill with it for 4.5 years.
I hope you've benefited from the hysterectomy. X
dm2136 bettybetter
Posted
I was in a&e when they discovered the degenerating fibroid which was acute abdominal pain but did subside. However my blood tests showed very high levels of inflammation and low white cells etc and i felt really unwell. I started the zolodex a few days later and an HRT called Livial. Gp said my symptoms - tiredness, pain etc were due to the toll of the breakdown of the large fibroid on my body. The zolodex worked for me and I'm so glad to be fibroid free, 44 and getting my life back! The op went really well and while recovery felt a bit slow, I'm an impatient patient and have no regrets!
dm2136 bettybetter
Posted
I ended up in a&e with horrendous abdominal pain and they were sure it was gallstones or kidney stones until cat scan showed HUGE fibroid. I RAN 8m day before and asked gynae consult if could keep running until my hysterectomy...soooooo naive....once i started the zoladex i needed to sleep daily, was totally drained, awful back pain that travelled down leg, serious bloating, like no clothes fitted, elastic waists were a strain, just horrendous! Am now 8wks post op and starting to feel stronger. Walk 5m daily, started with PT last week, fighting hard to get fit again, am very impatientbut heading in the heading in the right direction. Rest when you feel you need to, listen to your body!
ColTheDoll bettybetter
Posted
I had this treatment and my fibroid shrunk a considerable amount. I did not have any side effects from the injections. I got them monthly so that if it wasn't working for me, I could stop at any time. I had read some horror stories and was very apprehensive! Proved to be the best thing I could have done... I had such intense pain before this treatment due to pressure from the fibroid.