Infection after uterine fibroid embolisation

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Help! Has anyone else had foul smelling vaginal discharge following UFE?  At my wits end with my GP and not sure what to do next.

Had my UFE 2 weeks ago, recovery was tough the first week but much improved by the end of the second week.  Then came the smelly discharge.  I'd had discharge for weeks prior to the procedure and was told this was nothing to worry about.  I knew discharge would continue for several weeks after the procedure, however, i wasn't prepared for the smell.  

Most women who've undergone UFE experience discharge (fibroids breaking down apparently, lasts for months) no one mentions offensive smelling discharge.  I can't be the only one.  It's really bad - I smell like rotting meat!

I know offensive discharge is one of symptoms of infection, but I don't have any other symptoms - no fever, high temperature etc. (although did feel feverish, with mild temperature for 2 days)  Saw my GP earlier in the week, and she dismissed the idea of infection (swab test was negative for BV etc).  I requested a 2nd test as this smell can't be normal - I get those results next week.

My worry is GP is testing/looking for the wrong type of infection.  She hasn't ordered a blood test which is apparently more accurate in determining uterine infection?

I have multiple fibroids and my MRI showed one had undergone cystic degeneration - is it possible the UFE has escalated degeneration and the consequence is mild infection?

Has anyone else experienced this?   

I can't get GP to take me seriously - she won't even prescribe antibiotics as a precaution.  Can't get follow up appointment with my gynea due to some admin error (means my case file is between consultants - don't ask), so will have to wait until the new year until that's sorted.

The smell is getting me down.  I can't go back to work, dreading christmas, just feeling pretty rotten.

 

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  • Posted

    It is almost certainly the degenerating fibroid, probably not an infection, but the body expelling necrotic tissue. I haven't had UFE, but I did have a fibroid which suddenly necrotized, and the smell was literally like rotting meat, it was very distressing and strange, and my gp was of no help. In the end, it stopped after about a month of its own accord, after the tissue had finished expelling. I found that using cheaper, cotton pads was MUCH better for controlling the smell than expensive pads, which for some reason exacerbated it. 

    Well, hope this helps! 

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    • Posted

      Thanks Rosieposie, it does help to know it will eventually stop.  Makes sence it could be necrotized tissue - hence nothing showing up in swab tests.

      Do you know what type of fibroid you have?  My MRI showed I have about 5 ranging from 5-7cm.  2 are submucosal, 2 subserosal and one intramural (that's the one that was already degenerating prior to surgery).  I had a procedure in the summer to remove any fibroids within the lining of the womb (and any submucosal incursions) - this was to prepare for the embolisation.  Didn't think fibroids that are primarily in the lining, would cause such a stink as they die.  Can't wait for it to end. 

      Thanks for the tips on pads - will try out the cotton ones.  Should I bother with odour control ?

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    • Posted

      Honestly, in my experience the odour control pads were the worst, I guess because they're meant to deoderise blood, not dead tissue! The best thing to "weather the storm" as it were, is to get the super cheap supermarket-home-brand no-frills cotton sort (like 15 for $2.50 type thing) and then just keep changing regularly - hourly if needs be. Unfortunately there isn't a lot you can do about stopping the actual odour, it is just part and parcel with the dying fibroid. Trust me, you'll know if it is dead tissue, rather than an infection. It has its own special brand of horrid smell, not fishy or yeasty but literally like rotting vegetation. But it will pass! Douching, as another member suggested, might help you feel fresher, but in reality if your body is expelling dead tissue you can't stop the process. Just remember it is natural, and a GOOD thing. You don't want it inside you! Your body is doing the right thing by getting rid of it. Truly, you have my sympathy, because I know first-hand how self-conscious and alarming it is. 

      My broids are intramural, pedunculated and subserosal, ranging from 5-10cm, plus a bunch of smaller ones. One was prolapsing into the birthing cavity and that was the one that necrotized. But really, I don't think it matter where it is, dead cells are dead cells, and they will smell bad, just as rotting meat left too long will (sorry to get graphic, but it's pretty much the same thing!). I would say it's the one that was already dying before embolization that is causing the strong odour now.

      ...Anyways, I'll be getting myo in January, at the moment I'm having hormone treatment to shrink them.

      I really hope this doesn't spoil your Christmas, and just know that things will definitely get better! I really don't think you have to worry in the sense that there is something "wrong." (But after all, I'm no professional, I've just been through the same thing as you.)

      Hugs! Rosie

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    • Posted

      Hi Rosie, what kind of hormone treatment are you doing now? My doctor initially suggested lupron to shrink my fibroids so I can have a second myomectomy but I decided to try the Embolization instead (still waiting for my appointment) since my fibroids seem to keep coming back every couple of years anyway and I thought I should try something different than surgery and hormones this time around. Also have you tried anything fibristal? Or anything natural that worked? Nothing worked for me but I'm still looking.
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    • Posted

      Well, I'm still wanting to preserve my fertility so my options are a little limited (you're not supposed to have embolization if you're still planning to have children). I'm taking Zoladex for the shrinking.

      I have to say that, right after diagnosis I really upped the ante on dark greens and added turmeric to everything, and drastically reduced dairy and meat (I mostly eat fish now, and drink herbal teas). These were all based on things I had read as being potentially beneficial, but some people go reeeeally extreme with their diets, which I wasn't prepared to do. - I can't say for sure if it helped but my fibroid starting expelling after that, and I did feel somewhat better... but I wouldn't really feel confident to abscribe it to diet, because I just don't know for sure! Still, it's something I'm keeping on doing, because I simply feel healthier, and I want to be strong and healthy for surgery. 

      Well, good luck with battling the broids! Tenacious little monsters, aren't they?

      xox Rosie

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    • Posted

      Thanks!! I've cut out all red meat and poultry too and very little dairy (no milk) and no processed food and I try to control my sugar intake.. I generally feel healthier but I don't think it's helped with fibroids. I've also tried acupuncture, systematic enzymes, fibristal, etc.

      Funny you mention fertility because I also like to preserve mine - which is why I'm not having a hysterectomy which was recommended to me by every doctor since my fibroids are huge and keep coming back. However, my doctor said that Embolization is still my best option and even though there are risk, she's had many patients who have had successful pregnancies afterwards. Apparently the reason they don't usually reconmend it to women who want to have children is risk of uterine infection which will result in emergency hysterectomy. I was very skeptical for a long time and finally I caved.. It's been a long struggle so I think I'm just ready to take the risk - but your case seems different, you should definitely try myomectomy first, maybe they won't come back. I felt so good after my myomectomy for at least 1.5 years.

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    • Posted

      That is interesting... I didn't know that! It wasn't anything I'd ever considered, I suppose because I'd always heard of it as being "unsuitable" for people who want to keep their fertility. It's amazing how much you're NOT told, isn't it? Like you mentioned before, you really have to research everything yourself because often the gps no next to nothing and the gynaes don't tell you all the facts.

      I haven't had any children yet, so I'm quite anxious to keep my fertility. However, apparently my womb is so messed up that there is a fairly high risk I'll lose it during myo anyway. It has been a rough ride actually, I was sent off to a gyno-oncologist because there were concerns my degenerating fibroid was actually cancerous, but this seems to now be discounted. (I'll find out for sure after myo). I'll keep the embolization in mind, though! I feel like a detective, there's so much I've had to find out for myself. At times it has seemed quite overwhelming, but that is why these forums have been so good, for sharing info and support.

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    • Posted

      Hi everyone, wanted to give a quick update.

      Went back to my GP, this time saw a different doctor who actually listened to me and put me on antibiotics as a precaution pending a whole range of blood tests.  Then a couple of days ago (too much info warning!!!) sitting on the loo, out popped a fibroid the size of a generous baked potato!  Passing the fibroid didn't hurt but I did feel a bit sore for a day. 

      I was pretty shocked because there shouldn't be any fibroid that large left in my uterus (that's why I had the hysteroscopic myomectomy in the summer, to prepare for the UFE).  Anyway the fibroid smelt like rotting meet and looked like a small greyish white alien.  Once it was out, the smell was gone.  I waited a couple of days before posting just to be sure but yes!, the smell is gone!! :-)   I still have the expected post-UFE discharge but it has no discernible smell.

      What's intriguing about the whole thing is I've had a heavy watery discharge for the past few months, which the docs put down to fibroids.  I was so focussed on the UFE that I didn't question this.  However, during one particularly nightmarish period (this one was so heavy I had to have a blood transfusion) I remember feeling something when I tried to insert tampons (apologies for being a bit gross).  I dismissed this as there couldn't possibly be anything there.  Now I'm thinking it's could have been there all summer.....

      Anyway, just wanted to give the update.

      Wishing you all a happy christmas xx

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    • Posted

      Hi Rosie I have a submucosal fibroid that's driving me crazy, I'm almost certain is necrotic because smells awful but I also have a yellowish discharge that worries me, could that be cancer? I don't have appointment until next week and I was wondering how long can you keep that necrotic tissue inside you and if it's better for me to just go to an ER...

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  • Posted

    Perhaps I should also add that this was later confirmed by my gynacologist after two "before" and "after" MRIs. It's funny because I was on to it right away, I told both my gp and my gynae that I thought that was what was happening, but I was dismissed by both of them until the MRIs showed I was right.
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    • Posted

      Wow what is wrong with these doctors? Their ego is blinding them from hearing what the patients have to say about their own bodies and the possibility that they might be right. I have a number of big fibroids and considering Uterine Fibroid Embolization now and most of what I've learned about the procedure, risks, and side effects have come from my own research. I've been dealing with fibroids for many years (also had a myomectomy 3 years ago) and I can't even tell you the number of issues that I have had to figure out on my own and convince the doctors to treat or test for instead of the other way around (low iron, hyperthyroidism, trying fibristal, etc)
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    • Posted

      so frustrating right?

      My UFE was my 4th procedure in 9 years (already had an open myomectomy and 2 hesteroscopic(sp? myomectomies).  I know I'm not a medical professional but when I tell my doc something isn't right with my body, I know it isn't right.  Really wish they would listen more.

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