Persistent Discharge but no pain!
Posted , 4 users are following.
Hi All,
Your posts are so helpful and I want to thank you from the bottom of my heart as I feel so alone. I really do not have a support system and since what you describe with both yellow & bloody discharge is what is happening to me, I am wondering if the situation resolved for you all. Just to give you some background, I am 34 and was diagnosed with 3 fibroids, dominant one being 11cm and in the posterior uterine wall (very weird position) plus 2 very small ones on the right (nobody could even tell me if they are considered submucosal or what, not even the MRI report - you guys are correct that the medical profession is so limited in its way of handling this and their knowledge is laughable.)
A recap of my situation:
UFE surgery on Aug 21, 2018 - No discharge for the first 2 weeks after the procedure - and very little pain -
The 3rd week after procedure I had gone back to work and discharge started light - sometimes brown and others yellow, NOT persistent and only every few days - light pantyliners were sufficient and I never used tampons since they told me I should avoid any risk of introducing bacteria.
Since Dec 4, 2018 to present (Dec 21, 2018), I am having yellow foul-smelling discharge NON STOP / every single day and it is heavy in flow but fluid/watery, not very thick. This makes me think my cervix is not wide enough to allow the fibroid(s) to pass through it so only the uterine wall is shedding (but this is an assumption which is why I need medical MRI confirmation to see if the big fibroid looks like it needs to expel vaginally.)
I immediately contacted the radiologist who performed UFE and they dismissed me saying "they are not gynecologists" and I should go to my gynecologist who can perform a pelvic exam. Problem is - gyno's know nothing about radiology and vice versa! (In my mind also thinking: you radiologist were quick to take my money and insurance money but now do not want any of the subsequent complication responsibilities from the procedure you performed!)
The gynecologist said "it does not look like BP (Bacterial Vaginosis,) and I do not know if it is a degenerating fibroid" Overall, she was unable to properly diagnose this. She, along with many other gynecologists I have met, have ALWAYS been much more set on myomectamy instead of UFE so she was quick to suggest I go to a surgeon/oncologist who would just put a knife to the problem and cut the fibroids out, and after everything I have gone through with UFE I truly do not want any invasive procedure if fibroids are dead I just want them to slide out!!!!
I have had regular periods every month since the procedure - but since the constant discharge started, I had a really heavy and much more "fluid" period, heavier in terms of the amount of blood, but the consistency of bloos was literally like water - typically, my period blood is thicker but this time it is like a fluid, both the discharge fluid and the blood are extremely "watery" - was the discharge and blood always thicker for you? I had it thicker a week ago and now it is super fluid. Please let me know how things ended up for you!)
I never had children and also read that women who previously had children pass dead fibroids much more easily because the cervix might open easier, whereas those who never gave birth might need to be under anesthesia and the doc helps the fibroids out by having a hysteroscopic resection or alternatively a D&C, are either of these significant surgery? I do not want to go through anything else if I do not have to! I do not feel pain AT ALL so this is all very confusing to me, it is a painless heavy blood/discharge flow that impacts my every day, I have to run to the bathroom every 30 min to change pads and avoid staining office and board room chairs! It literally is impossible to keep going on like this. I keep asking for an MRI but the radiology dept where I got UFE keeps saying my situation is "not an emergency" and I am "likely expelling degenerating fibroid" and they do not want me to do the MRI until March 2019, because it takes that long to see peak shrinkage, although I am honestly not even concerned with the size of dominant fibroid still being large, I know it is big and I understand it will likely will not shrink from UFE; and if I am lucky it will stop growing (that was the goal all along), but the purpose of my request for MRI is to determine the cause of this persistent discharge and if at this point it needs further intervention (I HOPE NOT) and also to confirm that the fibroid is in fact no longer receiving blood supply because if it is, then the UFE was unsuccessful.
The gyno observed that the discharge did not look like BV (Bacterial Vaginosis,) but just to be sure prescribed a cream which is supposed to kill any bacteria - this is however not an antibiotic but simply a cream for use within the cervix for 7 days. Honestly I feel like doctors could not care less about these discharge issues and I am scared of using this random cream because of what I read here where it makes the discharge worse, and before UFE I was told to literally avoid inserting ANYTHING for risk of bacteria and infection - they even told me to avoid taking a BATH because of this! And now I am supposed to stick a tube up my cervix because of this misdiagnosis? I have literally never in my life had discharge like this so the chances of it being BV are seriously slim to none. Plus other women reported the cream did not stop the discharge.
I feel very dismissed, I ask for help and nobody knows what to do and it is truly frightening. The fact that I am not in any pain, but just feel exhausted - seems to be the reason why doctors do not care what is happening to me.
Do I just have to live with chronic discharge and heavy periods. By the way, for my entire life before UFE, I have never had a period this heavy - my fibroid symptoms used to be bulk issues, pressure on bladder - but my periods were truly brief (4 days) and non painful.
Not to mention the financial burden of buying such a high amount of pads, liners, wipes, heavy period items, absorbents, none of which are covered by insurance.
I also read that after UFE, discharge could be chronic due to a superficial cavity within the infarcted fibroid tumor that communicates with the endometrial cavity through a hole in the endometrium. This situation is indicated by a specific appearance on TII sagittal magnetic resonance images (again why the MRI is needed but nobody will have me do it). Hysteroscopic resection of the necrotic fibroid tumor was usually curative with other women who had this, but I really do not want to go through anything else, if not absolutely necessary.
I wish someone could just tell me - deal with this for 1-2 months and you should be fine after that! How long did discharge last and does it ALWAYS end with fibroid expulsion? In my case discharge is so watery it makes me think I will not expel anything solid, but I am still curious about you guys - is the expulsion of a fibroid painful? I have experienced a miscarriage and that was atrociously painful. But nobody will tell me if this is what is to be expected!
Please let me know how you are! Lots of hugs - Bella
0 likes, 26 replies
Lunarcycle Biondina26
Posted
Hello,
I'm having a very similar problem.
I had my uterine fibroid embolization procedure a little over 2 months ago. I've been having so much watery discharge. Sometimes its very mucousy as opposed to watery...that happens depending on the time of month. Its either clear or yellowish.
I've always been a watery kind of person since my 20's (I'm 45) but fibroids in general made the fluids much more pronounced. My fibroids are large... Uterus is 5 months pregnancy size. I've lost a lot of mass so far in one that was about the size of 2 fists. Its very soft now and almost gone. Its on my left side. The others are bunched together on my right side so its taking longer to see or feel their progress.
My biggest problem is the watery discharge didn't smell before the embolization procedure, but it does now!
I cant even risk intimacy at this time because of the rotten smell. Its embarrassing and sometimes I worry that I will smell bad forever. It smells like rotten garlic or rotten onions with something else mixed in...really pungent. I was told I wouldn't smell...I asked because I experienced a rapidly degenerating fibroid years ago and that was hell...radiologist said no smell...but he was wrong...figures...he doesn't even have a vagina!
I am happy the fibroids are shrinking but the smell has really gotten me down.
Not sure I can offer much advice other than try not to over-think it so much. Sounds like you're really spinning your wheels on this. It will take some time for this to resolve. If you get major complications you will know because its very painful with fever, etc...
I had a fibroid that outgrew its blood supply about 2 and a half years ago and the pain + smell was unbelievable. This was way before my embolization. ...The whole process took about 4 months or so to resolve but eventually it did completely clear up.
By the way I went to the gynecologist then and she was clueless...told me to soak in the tub in order to "clean myself out". Meanwhile I had a decaying fibroid that she didnt have a clue about. We know our bodies better. Listen to yours.
I've written a lot...hoping I can help any other women with their issues..
I hope for you, myself and other women going through this fibroid nightmare that it will all work out soon.
Biondina26 Lunarcycle
Posted
Thanks so immensely for your suggestion and first hand experience too! It is so much discharge and literally is non-stop so I am confused how I can still be standing and not be utterly exhausted at every minute of the day. For instance it gets mixed in with my period blood which is then not containable because it is soooo much, and leaks throughout the night. I have literally bought adult diapers and have not had sex with my husband in almost 2 months because of this! How could they not think this is acceptable - my radiologist did not even SAY the fibroid discharge / expulsion could happen, I only know about that from researching ad nauseam by myself.
I have no idea what to expect and that is the scariest part - like, should I be expecting a full bulk expulsion, and if so is that going to be detached from uterus or need a doctor to go in with an instrument to cut it off? What if it only partially is dead and the other part still has blood supply? Nobody will give me answers and I have a trip planned, after my husband and I have not taken a vacation in literally one full year, now in February we are going to the Caribbean so what the heck do I do if something urgent happens there? I am so sick of fibroid issues and it is discouraging to see the problems keep going for years and years for many women.
Lunarcycle Biondina26
Posted
I do understand. It is a lot to deal with!
I wonder who told you that the fibroid will fall out? Its not a given. Most wither, soften and pull back into the lining or uterine wall. Only a very specific kind fall out...those are outside the uterus, on stalks, or in the cavity.
The radiologist told me to expect that to happen only in regards to a very specific singular one of mine.
Do you know the type of fibroid you have? Where in the uterus are they located? Did your radiologist specifically tell you that YOUR fibroids will be expelled?
Even when I experienced that degenerating fibroid a few years back, it had extremely pronounced symptoms but I never expelled it. It was removed from my body as I went to the bathroom daily. Sorry to be graphic, but essentially the fibroids are removed through our poop.
The other thing to remember is that every woman is different. This site has been very helpful to me... Its shown me that we each have our own reaction to the procedure. Other than visiting this site, I limit my internet research on fibroids. Fibroids are somewhat mysterious even to Dr's and I think too much information found on the web can do more harm than good to our psyche.
Good luck Biondina!
Biondina26
Posted
Lunarcycle,
THANK YOU IMMENSELY for your response, honestly you cannot imagine how much it helps to just read from someone who has PERSONALLY gone through this. All I get otherwise is judgement and aggressive suggestions to go with one option instead of another.
That is so encouraging actually to hear that it is not a given that fibroid will fall out, even though I had so much discharge! Mine was in the POSTERIOR uterine wall, and very large 11cm, so I honestly never even thought it could expel because of its size and location - but all this discharge that does not stop is scaring me! And also the radiologist will not perform another MRI until 6 months have gone by from the surgery. But I don't even care of the size, I just care that I do not get into an emergency hysterectomy situation UGH!!!!
So my dominant fibroid is protruding toward the back of the uterine wall and it is INSIDE the wall, so I guess intra-mural? Would you believe that no doctor nor radiologist that saw my MRI has ever told me if it is considered submucosal, or subserosal, or intramural? It was so large they were just like concerned to get it treated and did not give me enough info. So no, the radiologist who performed the UFE never said it could fall out - but another radiologist I met with beforehand was actually more "to the book" and started talking like a publication about it and talked about fibroid expulsion, but then said "although yours looks pretty well attached." The fact that you said it is expelled through feces is very interesting! I would have thought only through discharge but then I also think my discharge is so liquid that nothing solid is ever going to come out of there.
You are SOOOOO RIGHT that fibroids are somewhat mysterious even to doctors. Thank you thank you - you are so nice to have answered me!
S
cmak Biondina26
Posted
Hi Biondina26
So sorry for your current experience. Many women have and are going through the same experience as you with little or no direction or explanation for their recovery process from their gynes or radiologists.
Thanks so much for posting your experience wisbing you quick recovery journey.
Personally I have been searching the Internet for other womens experiences post UFE because I realized very quickly that I was missing something compared to what the doctors had said the post procedure would look like ..and am comforted that there's still hope ahead after others experiences
Am turning 50 soon but I had my UFI in Nov 2018 about two months after you after suffering from broids for almost 5 yrs, and it looks like periods are still here to stay.
I didn't know about this procedure until I changed my gynae( thank God fir 2nd opinion chances) . After the procedure I was told recovery would be 7-14 days, however I have been taking ibuprofen for continued mild aches
Have had my Ps twice already( short cycle) and they were so short (3 days) little bleeding, it was unbelievable becsuse they lasted forever and were heavy pre UFE! But am still experiencing what someone called "Emotional constipation" after 5 yrs of horrible menses experiences!
This is week 7 and I started experience watery/ brownish discharge with a funny smell and terrible cramps around my pelvic area. No fever though. I went to ER they did blood work found nothing alarming, except that my Hb was still slightly low, ( recovering from heavy menses due to broids) they also did US both in and out, They found fluid around my shrinking fibroids, and said its expected, (didn't know this) and for the pain they said keep taking advil more frequently.
Saw my Gynea ( he reccomended UFR and so has Vast experience in this) this week because apart from the severe pain (8/10) something whitish was hanging not coming out. He cut it out and put me on antibiotics . He said the bad smell is expected coz fibroids are dying and will keep being expelled, how expulsion happens seems different for each woman.
This Week 8 I have more discharge then before ie 2 wks after procedure.. fluidy mixed with some blood not as smelly.. I have been using reusable pads and this has helped cut down the cost of regular store bought pads and they are also comfortable. They are expensive at the beginning but worth it in the long run. I actually bought mine from WISH and they work great. I can give you more info if you are interested
It has really helped to read other women experiences and that has given me so much hope.
Can't be thankful enough to read these experiences under such uncertain experiences.
Thanks ladies God bless you!
Can't wait to feel better again!
Biondina26 cmak
Posted
Hi Cakmak, thank you SO much for taking the time to respond and share your experience. It helps so much, you are right. Also, your post was the first one insightful enough to make me think that it is infact "FLUID around shrinking fibroids" and not necessarily the fibroid itself - so maybe the uterus is shedding as a consequence of no more blood supply to the sides through those arteries... obviously none of this is confirmed without an MRI which I said in my previous posts, they are reluctant to do before the 6 month timeframe after the UFE procedure - but at the same time I think it is absurd that the medical profession is so limited with this, they are literally guessing when telling you a diagnosis and medicine should not be a matter of guess, it should be an exact science in 2019 and backed up by studies! I even offered my doctors that I am willing to be the subject of papers if this will help other women! There needs to be data and solid research on this stuff - just because something is not a malignant tumor they cannot keep treating it so lightly and without care! This has tremendous impacts on life quality and I just wish gyno's and radiologists communicated, and were truly experts about this. So now I am just sitting with the foul discharge and have no idea what to expect - like will anything fall out? I had such a large dominant fibroid it makes me think it cannot be expelled (too big) but my abdomen is significantly flatter - I don't know what to expect and feel discouraged even asking questions anymore.
cmak Biondina26
Posted
Biondina,
I hear you girl...hang in there, mine is flowing away too foul as ever so I have decided to let it be my new normal until the next surprise..or until when the womb is done doing it's "cleanse"..lool
At least you have no pain..I have pain and have to take my Ibuprofen regularly in order to function.
Maybe you should ask for an US (internal and external) for now. At least that will still tell what has happened so far and may put you at ease..
Usually MRI are at 3 months, but maybe it's an insurance thing..I don't know.
I live in Canada and its a requirement that it's done at 3 months.
I agree 100% that Radiologist and OBGYNs should communicate about follow up after UFE procedure and have a comprehensive step by step recovery process of up to 8 months, detailing what may or may not occur during healing process after UFE..
Surely if it wasn't for google what would most of us known what going on in our bodies...
Lets stay positive and hope fir better days sooner than later.
Biondina26 cmak
Posted
Thanks so much Cakmak! You've helped me so much. I wanted to check, what exactly is a "US internal and external" - I do not even know if to insist about the MRI, because I am not in pain - but all I want to do is just avoid an emergency! Also, I have this trip planned Feb 16th for 6 days and what do I do if like I get to be in dire pain there? I realize this is unlikely but who the heck knows.... I am so sick and tired. I have to go to meetings at work, and am scared of making the board chair stink after I sit in it. I know it is good that it is coming out but it is SOOOOO watery - literally fluid. Is it the same consistency for you?
cmak Biondina26
Posted
Hi Biondina ,
US stands for ultra sound sorry about acronyms. They can do the regular external pelvic one and add an internal one, where they insert the scan into the womb through the V. The results still show the shrinkage of the fibroids. It takes less time to do it as opposed to an MRI.
My discharge is also watery/creamish and smelly, not as bad as before sorry for gross description, my doctor friend said she could not smell anything around me..lool
I know what you mean about the chair..lool I usually wait for everybody to leave before I get up..seems to work.
For pain you could take some ibuprofen with you 400mg works for me for about 10hrs.
All the best
Guest Biondina26
Posted
Biondina I found this article for you where if you scroll down they mention "Chronic Vaginal Discharge" as a minor complication following UFE.
As to everything mentioned above, it makes no scientific or anatomical sense to say fibroids are expelled with poo. Lets be serious.
Lunarcycle Guest
Posted
Tracy,
Regarding the removal of fibroids through poop, I stand by my original statement. I found this information several places, but in case anyone needs a specific site, the information can be found via a quick Google Search by typing in "energetic nutrition, and women's health FAQ's" This will bring up the opportunity to connect to their website. I'm not linking to their site because I know this forum doesn't particularly like links. I like the site because at the very least they give a little bit more information on Fibroids than the typical overview found in other places.
Here is a direct quote from their site:
"If the fibroids are in the uterine lining, they will be broken down, carried through the circulatory system and excreted via the bowel"
You're welcome to provide any information you have regarding the removal of necrotic fibroid matter from the body. How exactly do you think it is removed? "Let's be serious"
Guest Lunarcycle
Posted
lunar
anything excreted through the vowel has been through the digestive system. The blood reaching your guts filters through many tissues and fragments of fibroids could never pass those. The blood from your uterus follows the normal cleansing circuit which would include liver and lungs.
You do realise that the website is trying to sell you miracle enzymes that "dissolve" fibroids. This is not supported by any serious studies and it's another way to extort money from desperate women.
Lunarcycle Guest
Posted
Tracy
It's very fundamental to me that whether the matter is processed by the kidney, liver, lungs or whatever, there are only two ways for waste to exit the body. It will come out either through urine or poop. I suppose sweating out toxins is another option. If I were in the medical profession I would be able to explain fully the process of elimination and the body. God willing, there is a woman on this forum with the skills and expertise to fully and correctly explain. I am not her.
I did ask you to please explain to me exactly how you believe the necrotic fibroid byproduct is removed from the body, but you did not. My fibroids are not in a position to fall out. They are in the walls of the uterus...not the cavity but they are shrinking and fading away. Exactly where do you think the byproduct of their shrinkage is going? Do you believe this waste remains in the body? Do you believe there isn't any waste at all? Where does the waste go?
I'm aware that the website is selling an enzyme and I'm also aware that whether you believe the enzyme works or not, they have far more scientific knowledge that either you or me, as evidenced by their ability to create, market, test, and sell supplements for the body.
Guest Lunarcycle
Posted
dear Lunar
i totally get what you're saying. as far as i know fibroids after ufe become dead tissue. dead tissue shrinks because it has no blood or any other fluids in it. like lets say the skin of a mummy versus my skin thought at my age there's not much difference lol. I have been told the dead fibroid will forever remain inside your uterus wall, that is why ufe does not eliminate intramural fibroids only shrinks them. submucosal ones will either be expelled whole or in bits only vaginally.
if you mean where does this fluid and blood goes, well yes some will be expelled as vaginal discharge and some may join the blood flood and excreted like you said through urine sweat or feaces. but that is different than bits of fibroid in your poo which is what I interpreted you were saying by "broken down, carried through the circulatory system and excreted through the vowels".
sorry for no capitals, typing this whilst in pain and nausea.
cmak Guest
Posted
My biggest submucosal one was expelled last week..what a journey. ..That's two months after my UFE.
Am trying to figure out what happens to the rest of shrunken broids. The dissolving into the blood system and released thru urine or other ways of removing body waste and toxins makes sense.
Get well soon Tracy, hope your pain is improving.
Biondina26 Lunarcycle
Posted
Lunar, Your help has been invaluable, thank you SO much! Like you, my dominant fibroid was inside the uterine wall, definitely NOT inside the uterus, which is why the discharge is weird, I did not even ever expect it! It is true that studies say those fibroids only shrink and stay inside as dead tissue, but your article is much more hopeful with them being excreted and forever OUT which I am sure is what we all want!!!! BOOOO FIBROIDS! UGH. So update - I contacted the radiologist who performed the surgery and his assistant said he is away until Wed Jan 30, after which she will show him my detailed email, and if I can get insurance ducks in a row and get a freakin MRI and blood tests, maybe they can tell me what the heck to expect. The only thing I want them to diagnose is if this discharge is chronic or temporary, its exact cause, and I also read that after UFE, discharge could be chronic due to a superficial cavity within the infarcted fibroid tumor that communicates with the endometrial cavity through a hole in the endometrium. But more likely, the uterus sheds due to fibroid death. My discharge has been SLIGHTLY less lately - but my trip is nearing and I do not know what to expect - like can I even wear a bathing suit?? Did I waste all this money and won't even enjoy myself - but cannot change anything with time off work and flights/hotels etc GRRRRRRRRRRR I JUST want to live normally and fibroids have been a horrible burden on my life.
I really do not want to go through any other surgery or anything else, if not absolutely necessary.
Thanks, all. Pardon my french but whomever is correct above, I sure hope this s**t is coming out.
Biondina