Infection after uterine fibroid embolisation

Hi Libra 

I'm so glad to hear about your really positive experience in being free from fibroids. It's very, very comforting to hear of a positive experience. I know it's been a while since you were on the forum but if you're still looking here, I wondered if you could answer a couple of questions to help me feel at ease because I've had a torrid time.

1. Did you also bleed (like a period) when discharging?

2. Did you generally have heavy bleeding after UFE (embolisation)?

3. Had you had children before embolisation – the reason I’m asking is that it sounded like you passed a pretty large fibroid vaginally, and I’ve heard it’s hard for women’s cervixes to open that wide naturally unless giving birth. I haven’t had kids but hope if I need to get rid of a fibroid this way, it can fall out easily like that too. In fact, I do hope for the entire fibroid I have to just drop out and p*ss off from my life with minimal fuss.

I had embolisation 6 months ago, was feeling fine for 5 months with just a slightly heavier period on days 1 and 2. But since last month (5 months after embolisation) I've had a non-stop period for a month, with two huge haemhorrages of blood, clots the size of mandarins and lots of clear fluid. I've had to go to A&E twice for fear of infection (but no temperature, just vast quantities of fluid and clots coming out) and had such low iron they wanted to give me a transfusion but I didn't want one because at the time I was in Myanmar (Burma) doing development work and in the most rudimentary hospital, I was afraid of the hygiene of a transfusion.

The weird thing is, I was fine for five months, all the doctors said I was in great shape and the embolisation had been very successful, so they okayed me to travel with my work about a month after embolisation. 

I only flew overseas four and a half months after embolization, but immediately after the flight I had small amounts of foul smelling discharge for a week. Then as soon as I had the second leg of my flight (a longer flight), I started to bleed about 10 hours after landing. At first I thought my period had come two weeks early, but the period wouldn't stop, and on the tenth day of bleeding the frightening haemhorraging started whilst I was asleep.

Since then, I can't stop the bleeding. At hospital, Tranexamic acid worked to stop the bleeding for a bit. I also had high doses of norethisterone since hospital 10mg X 3 times per day which worked for a few weeks but no longer works. Stopped the norethisterone now.

I'm utterly exhausted, some days I can barely think, and after being upright about an hour, I have to lie down and sleep. This is very hard and sudden for me because I am an active person and was doing development field work when this struck, so it's been difficult to have my life change so suddenly. Added to that, I'm still in Asia because I'm too scared to fly long distance with this kind of bleeding, clotting, utter exhaustion and lack of mental clarity. 

So whilst I can get to good doctors (the doctors in Myanmar are incredibly skilled and manage to do a great deal given that they work in such poor conditions with barely any equipment), I can't access any proper healthcare for now (hospitals not clean, barely hospitals here, just huge halls with doctors doing their best in woefully underfunded and poor conditions) - can't have an MRI, for example.

So I'm very scared and just want to know this part of my life will change for the better. It's all so fleeting, one month you're working, energetic, fulfilled, the next, post-embolisation effects knock you over and completely throw your way of life and health in the air.

The two fibroids I had embolised were 10cm and 9cm approx in diameter. One was submucosal, and the doctors cautioned that this could drop after embolisation and if the body can't deal with it, it could be dangerous as I'd need to go to emergency and have D&C. 

Sorry for this long story, but I guess I'm confused about what to do now.

I'm bleeding like a non-stop period, and on some days the smell is atrocious – it’s like everyone says, rotting flesh and it’s all through my clothes, on everything I touch or sit on. I feel like it’s wafting everywhere I walk. I don’t see many white pieces, just one or two tiny pieces, for the most part I pass blood, but I'm not sure whether to try to control and stop the bleeding because no doubt that's contributing to my exhaustion (anemia). But part of me also wonders if it's better to let myself bleed, as the blood is accompanied by this foul odour and I know this is the necrotising fibroid even if I can’t see the white pieces, so better out than in. I'd be exhausted anyway right (?) even if I wasn't bleeding - if your body has dead tissue inside it is having to deal with, it will exhaust the body - so maybe being exhausted through anemia ie letting myself bleed and getting the dead tissue out, is better than not letting myself bleed. It's all very confusing and difficult not to know what the best thing to do is.

The medical profession is very limited in its way of dealing with this. They don't tell you that complications from UFE could happen this late. They don't tell you that the experience of necrotising fibroids can be so torrid and equally bad for your health, and they don't tell you that a large proportion of women who have UFE end up having to have further surgeries anyway within a few years. The gynaecologists I've managed to speak to both back home (not my usual gynae) and in Myanmar all wonder why I was advised to have UFE, when the complication rate is so high and the kind of work I do in the field means it's better for me to take three months off to have an operation, fully recover, then go back to work, rather than this long drag of post-surgery difficulties. I've heard women sometimes have complications years after UFE, with necrotising fibroids. It's all too unpredictable how the body will deal with these things.

Plus I had larger fibroids - but my original gynaecologist kept refusing myomectomy for me even though I asked the two/three times I saw him. Eventually he suggested UFE. I was happy with it for the first month, and thought it was great until all this happened. Now I don’t know what to do. If complications can happen this late, and even years from now, what’s a woman to do? Cut out her womb and have a bloody sex change?

Sorry for the long message – I guess I just wanted to find out if you had any of the above (questions), if I should try to stop the bleeding or just let the blood (with its accompanying foul smell) keep coming out, and if there are any women out there who have had similarly late complications like me.

Thanks Libra, and all the women out there who are dealing with this and sharing your stories, it helps so so much. Women sharing their experiences helps a million times more than talking to any doctor in the five minutes they allocate you in our modern health services. And the follow up in health services is also just five minutes, three months or one year later – what can they helpfully glean in terms of assessing how good the treatments they’re recommending to women are, when this is the poor state of their fact-finding, and their time with patients?

I've pored over the internet this past month and read medical studies and their findings are woefully inadequate, they certainly do not reflect the myriad experiences I've read of thousands of women online. The patient leaflets from health services are anodyne and don't give any inkling of real potential complications, nor the time period these complications can occur. All you feel you can trust now is the voices of other women like yourself who have lived-experience, not theoretical knowledge, not basic facts gained from 'studies', not barely-focused questions asked quickly in 5 minute sessions at 6-month intervals by overworked, unfocused doctors who are trying to negotiate unwieldy software systems whilst you're in the room with them so they barely take their eyes of the screen and consequently don't HEAR (active hear, active listen) you.

Thanks Libra, and all women in this world. Women rule.