Re: post embo pain - now 10 weeks!

[Guest guest]

Hello Anne,

Glad to hear you posted your message

to embo groups as well.

I was reading your response in post

21307 Sun/June 23, 02.

You mentioned that prior to your UAE

you had spent three plus weeks in

South America and in a location with

no running water. Are you a frequent

world traveler/keenly aware of the many

diseases found abroad? Could you

possibly have contracted a water, food,

or insect- borne illness /have you been

tested for and entirely ruled that out?

See-VegasValley.com, www.vegasvalley.com/

shared/health, click on Health Questions

answered: How do I avoid illness overseas?

Please review the Central/South American

diseases link/their symptoms

Additionally in post 21307 you mentioned

" past 8 months compression pains currently

experienced and to stop " seize up completely "

it that an english term for severe constipation?

Can you get a gastro specialist to have a look?

Thinking of you....hoping you can rule out

everything possible on the hunt for good health--

your diary keeping is excellent. did you mention

your overseas journeys to your doctors?

Hope you get help from embo groups as well--

keep casting that net. marsha

> I have just returned from my Gynae appointment and I am now

> very confused, and rather distressed. He said:

>

> 1. Blood test, no infection - as expected. Only a slightly higher

> marker on liver function an indicator of muscle damage, which is

what

> UAE, is all about.

>

> 2. Ultrasound, no sloughing of fibroids or cysts - as was suggested

> at the scan appointment. This scan hurt me, and the pain ramped up

> and lasted hours - so why should that be? No comment was passed.

>

> 3. My Gynae has spoken with my IR, who apparently has spoken with

[or

> has plans to speak with] other experienced IR's in the area, no one

> knows what could be wrong with me. There seems to be no experience

of

> this length of pain before in the UK so nothing sticks out as

> remediable. How long this will carry on is unknown, neither is it

> actually known whether my pain has anything to with the UAE.

> However he is calling the IR again for me, since I queried whether

> this referral on to more experienced IR's had definitely taken

place

> [he seemed somewhat unsure when he was pressed on this].

>

> 4. I presented him with my full list of symptoms - this now

includes

> one extra that I had missed off my post last week - and the

> pain/symptoms diary I have been keeping for the past two weeks

> [available on request to my email]. He thought about it then said

> that these do not really add up to any one gynae issue and I could

> possibly have two problems [5 & 6 below] or something else entirely

> that has nothing to do with a Gynae issue [he has said this before -

> has quoted another patient with pneumonia to me twice in past

visits].

>

> 5. He felt that I should try a prescription for Buccscopan

[hyoscine-

> N-butylbromide] 10mg, which is an antispasmodic agent used to

relieve

> muscle spasm in the intestine/bowel, reproductive system, and

urinary

> system. This dose is apparently not that strong so I can play with

> the quantities to see if it might stop the stabbing pain [only part

> of my pain, since I get non-period, period pain as well] - it's

> certainly worth a try. This came across as a bit of an after

thought

> so I do hope it will have some effect. Bromide eh? I must look this

> one up. I took one two hours ago, still sore I'm afraid but worth

> perusing. With any luck it might sort out my additional symptom

[see

> below]. However if this should work what is causing the pain/spasms

> will still be a puzzle.

>

> 6. Just to be sure, and because he said some of the symptoms could

be

> peri-menopausal, I have now had another blood test to check my

> hormones. He is very certain that UAE's do not impact on the

ovaries

> permanently but the 'insult' to the uterus could have brought on

some

> form of temporary go slow, which can be treated. The pre UAE

hormone

> test was normal, and the timing was right to make a comparison so

> it's worth a go. He will call me with my results - now that made me

> sit up!

>

> 7. Now get this one, he cannot see that he can help me further so

it

> may be left as it is, no more meetings required. Reading between

the

> lines it's my problem now. He is going to refer me to a general

> physician to look for other problems I might have, as he feels some

> of my symptom [dizziness, nausea, pain] could possibly relate to

> bowel problems and are incidental to the UAE. This may have come

> about because I had a one-week break after UAE without pain, before

> it all started up again plus the nausea/dizziness symptoms, which

he

> cannot relate to anything specific. Since I had pain before UAE

[but

> infrequently] this has added to his thoughts on this as a

possibility.

>

> So whether this means that he will just refer me back to my GP for

> her to start again through the system for something else, or

whether

> he had someone else in mind, was not clear. Although I did ask I

did

> not get a direct response to this question - perhaps he is still

> thinking about this. He thinks my symptoms might go in time but can

> give me no reason why, nor any timescale, just said that everyone

was

> different and reacted differently so I was unlucky.

>

> 8. Because of the above he feels that any further Gynae

> investigations that he had spoken of before will prove negative and

> he would not wish to subject me to an anaesthetic under these

> circumstances. Maybe he is right, but I've just lost all the straws

I

> was grabbing at so you can imagine how I feel.

>

> Right now I feel more than just unlucky. I feel sore [well at least

> the pain has been light today], tired from lack of sleep, and

> distressed. People who know me say that I look ill. But what am I

> supposed to do now?

>

> I really feel alone. My sick note runs out on Thursday and I have

to

> go back to work full time. But I am too tired, dopey, and generally

> ill to work more than a few hours - some days are far worse than

> others. The pain strikes without any warning and can be disabling.

>

> What do I do now? Well I think I might put a post in for Dr Kirsch

to

> see if he can add any useful thought for me to pursue.

>

> Send me something funny to laugh at - I need cheering up!

>

> Anne

>

> PS the other symptom I missed from my last post is below:

>

> Involuntary body movements, sudden jerking seemingly originating in

> the abdomen area – mostly, but not exclusively, in my sleep.

> Sufficient to jerk my whole body, wake myself [and my husband] from

> sleep. At its worst before the first period, post-UAE, but in June

> this happened almost on the hour every hour during the night at

> times. This is new since embolisation and is stronger after or

during

> a period of pain.

[Guest guest]

Marsha,

Thanks for your thoughts, useful as usual.

Sorry I do try to keep the English expressions out of it but you know

we Londoners can't help it!

The large fibroid that sits on my spine compresses my sciatic nerve,

and has done for years, hence the numb thigh, which is now tingles

from time to time [she says hopefully]. It also compressed my bowel

from time to time, with very odd results. My major reasons fOR UAE

was bladder/back/bowel problems in that order. The bleeding is vastly

improved but was not close to the top of the original problem list.

I used the oesteopath to release the compression on my spine [and the

subsequent pain], which made a great deal of difference. The seized

up expression relates to the time I was so confined by my back

problems that I found it difficult to get out of bed in the morning.

I have also used the oesto twice since UAE - both times in the first

month as the fibroid was in full spasm and doing more harm than it

was before. Its a big fibroid so I don't expect miracles, but the big

one leaning on my bladder is far less aggressive now so I have

hopes....

Yes I suppose you could describe me as a part time world traveller [i

have to work as well you know], having been in Central and South

America on at least five occaisions. I take Cipro to protect my

stomach against bugs and protect myself against bites ferociously.

I did have a three month illness from travelling in Java in 1994 but

no-one ever found out what it was, it just went away eventually. I

will look at the websites you mention since they may have some useful

information.

No I did not mention this directly pre UAE - my medical files are

full of this anyway since I am always getting shots. Do you suppose

that I have a bowel disease from this travelling and this is creating

my pain issues rather than the embo? If so why do I get period pains

when not having a period? This to me is the crux question that my

Gynae did not answer. We know that nothing else can create period

pains apart from uterine contractions, and women don't ever get those

muddled up with any other type of pain do we?

Given this, and the fact that I quoted my bowel issues as part of the

run up to UAE, I still feel dumped. I suppose I should start

gathering evidence of bowel problems caused by fibroids to help me

deal with whoever ends up being the next person in line looking for

the resolution of my symptoms. I don't want to get shifted by a

gastro sprecialist back to a Gynae without the end being in sight you

know!

You mentioned the embo people, who have also been great. I have now

found six people who have also experienced prolonged post embo pain,

one of which sounds pretty identical to my symptoms. This makes me

feel so much less alone, although I do feel very sorry for this lady

who has such similar problems, with no respite, who may now give up

and have a hyst. Given the number of UAE's performed six people is

nothing - no wonder no-one seems to be able to identify this issue.

Ho hum,

Anne [London]

[Guest guest]

Anne,

Other women share your symptoms.

Despite the obvious frustration

and angst, there is sharing & support

and pehaps hope on the horizon amongst

all of you?

If spontaneous or longer term

resolution of your symptoms doesn't

occur--are you thinking of other

medical intervention? Will you get

an MRI at the 6 months mark or sooner?

I envy your world travel

and it sounds like you've been diligent

protecting yourself. I mentioned it

based on your last post about your

gynae's thinking the pain could be

from somewhere else.

I'm stumped Anne, please continue to

see your doctors, reporting symptoms,

watch for discharge, low-grade fever,

incapacitating pain..for fibroid expulsion.

....hoping you don't have

to travel for next several months.

Is it true that Winston Churchill

coined the phrase, " Never, never give up " ?

Many thoughts for your recovery.

Marsha

> The large fibroid that sits on my spine compresses my sciatic

nerve,

> and has done for years, hence the numb thigh, which is now tingles

> from time to time [she says hopefully]. It also compressed my bowel

> from time to time, with very odd results. My major reasons fOR UAE

> was bladder/back/bowel problems in that order. The bleeding is

vastly

> improved but was not close to the top of the original problem list.

>

> I used the oesteopath to release the compression on my spine [and

the

> subsequent pain], which made a great deal of difference. The seized

> up expression relates to the time I was so confined by my back

> problems that I found it difficult to get out of bed in the

morning.

> I have also used the oesto twice since UAE - both times in the

first

> month as the fibroid was in full spasm and doing more harm than it

> was before. Its a big fibroid so I don't expect miracles, but the

big

> one leaning on my bladder is far less aggressive now so I have

> hopes....

>

> Yes I suppose you could describe me as a part time world traveller

[i

> have to work as well you know], having been in Central and South

> America on at least five occaisions. I take Cipro to protect my

> stomach against bugs and protect myself against bites ferociously.

>

> I did have a three month illness from travelling in Java in 1994

but

> no-one ever found out what it was, it just went away eventually. I

> will look at the websites you mention since they may have some

useful

> information.

>

> No I did not mention this directly pre UAE - my medical files are

> full of this anyway since I am always getting shots. Do you suppose

> that I have a bowel disease from this travelling and this is

creating

> my pain issues rather than the embo? If so why do I get period

pains

> when not having a period? This to me is the crux question that my

> Gynae did not answer. We know that nothing else can create period

> pains apart from uterine contractions, and women don't ever get

those

> muddled up with any other type of pain do we?

>

> Given this, and the fact that I quoted my bowel issues as part of

the

> run up to UAE, I still feel dumped. I suppose I should start

> gathering evidence of bowel problems caused by fibroids to help me

> deal with whoever ends up being the next person in line looking for

> the resolution of my symptoms. I don't want to get shifted by a

> gastro sprecialist back to a Gynae without the end being in sight

you

> know!

>

> You mentioned the embo people, who have also been great. I have now

> found six people who have also experienced prolonged post embo

pain,

> one of which sounds pretty identical to my symptoms. This makes me

> feel so much less alone, although I do feel very sorry for this

lady

> who has such similar problems, with no respite, who may now give up

> and have a hyst. Given the number of UAE's performed six people is

> nothing - no wonder no-one seems to be able to identify this issue.

>

> Ho hum,

>

> Anne [London]

[Guest guest]

Marsha,

In the past day or so the pain has lesssened, and I may be getting

another week off it seems! That is such good news.

It makes such a difference not taking the narcotics and being able to

sleep a whole night, I have even been eating better now.

When I have these hours where the pain subsides I feel that just

waiting will resolve it in the end, when I am in considerable pain I

just want it to end. So it is very difficult to say what I really

want to be done medically with any certainty.

Having now read one the Gynae's letters to my doctor of 10th June I

see that he mentions a fibroid on the neck of the cervix which was

tender [when he wrote the letter] so I suppose if anything this one

could be trying to 'pop out' - fortunately it is one of the smaller

ones! This does not explain the pain though which is on the extreme

lower left and right sides of my uterus - I do see his conundrum.

I might as well go for other tests to rule out anything else but I

will not rush for them whilst the pain has calmed down [not gone you

understand but just tweaking now].

As for the travelling I have a trip to Morrocco booked for three

weeks time, and another for Italy in the Autumn. For some reason I

chose short trips closer to home this year, without thinking that I

might have a reason, so some things can turn out for the best. My

husband will be heartbroken if we do not go to Morrocco but I wonder

if the insurance will cover us, with my having these onging symptoms.

I've yet to mention it this concern to him..........Do you think I

should get a course of anitbiotics to take with me in case problems

occur?

The house looks like a medicine chest now!

Thanks for your interest and ongoing support,

Anne

PS Winston Churchill had no choice about giving up you know!

> Anne,

> Other women share your symptoms.

> Despite the obvious frustration

> and angst, there is sharing & support

> and pehaps hope on the horizon amongst

> all of you?

>

> If spontaneous or longer term

> resolution of your symptoms doesn't

> occur--are you thinking of other

> medical intervention? Will you get

> an MRI at the 6 months mark or sooner?

>

> I envy your world travel

> and it sounds like you've been diligent

> protecting yourself. I mentioned it

> based on your last post about your

> gynae's thinking the pain could be

> from somewhere else.

>

> I'm stumped Anne, please continue to

> see your doctors, reporting symptoms,

> watch for discharge, low-grade fever,

> incapacitating pain..for fibroid expulsion.

> ...hoping you don't have

> to travel for next several months.

>

> Is it true that Winston Churchill

> coined the phrase, " Never, never give up " ?

> Many thoughts for your recovery.

> Marsha

>

[Guest guest]

Anne,

A fibroid on the neck of the cervix?

Of the 6 women your in contact with-

how many had fibroids on the cervix

and did their symptoms resolve?

You may need to pay close attention

to the resolution of this particular

fibroid. According to stats, they

are more infrequent than other locations

in the uterus but can cause problems.

Because of the significant symptoms

you have experienced more than 10 weeks

out---your not eligible to get an MRI

from your IR? If not, than definitely

at the 6 month point? Your IR bears

the burden of checking the medical

citations on the efficacy of UAE on

cervical fibroids--ie if collateral

blood supply to that fibroid is

a factor?

Also, check with your gynae & IR as to

their recommendation to travel. If

they recommend caution & staying close

to home-- it would only

be a temporary postponement and you

could re-schedule?

The media has conveyed UAE to be

a quick effective procedure enabling

the majority of women to get on quickly

with their lives...however, when pain

continues as many weeks out as has

continued for you, close attention,

close proximity to medical care...appears

prudent and reasonable.

Very glad to hear though, your

feeling better!

Marsha

Very glad to hear though that your

feeling some improvement daily.

That's what counts and why I mentioned

the Churchill quote.

> > Anne,

> > Other women share your symptoms.

> > Despite the obvious frustration

> > and angst, there is sharing & support

> > and pehaps hope on the horizon amongst

> > all of you?

> >

> > If spontaneous or longer term

> > resolution of your symptoms doesn't

> > occur--are you thinking of other

> > medical intervention? Will you get

> > an MRI at the 6 months mark or sooner?

> >

> > I envy your world travel

> > and it sounds like you've been diligent

> > protecting yourself. I mentioned it

> > based on your last post about your

> > gynae's thinking the pain could be

> > from somewhere else.

> >

> > I'm stumped Anne, please continue to

> > see your doctors, reporting symptoms,

> > watch for discharge, low-grade fever,

> > incapacitating pain..for fibroid expulsion.

> > ...hoping you don't have

> > to travel for next several months.

> >

> > Is it true that Winston Churchill

> > coined the phrase, " Never, never give up " ?

> > Many thoughts for your recovery.

> > Marsha

> >

[Guest guest]

Marsha,

Thanks for the response and suggestions.

The minute I sent that email to you the pain came back, and rude

words came to mind!

However the pain is definately improving now [yipee!] and I am

getting more 'free' time from it, and the intermittent stabbing is

dropping off to every 10/30 minutes instead of every 20secs/5

minutes. Less pain is also matched by less nausea and less dizziness

so it's all connected. Even my sense of taste is coming back slowly

although it is still 'off' with certain things.

However despite this good news I am still really feeling

generally 'low' and even quite depressed at times. I suppose it's a

standard reaction to all that I have had to handle but this means

that I currently cannot face going back to these medics anymore. I am

supposed to be having more tests but no-one has said what and when

and frankly I am wondering what good they will be anyway.

I have no idea whether the other women who responded to me have had a

fibroid in the neck of the cervix as I did not ask them [if they

respond to my more detailed questions then perhaps I will ask]- in

fact I still do not know exactly what fibroids I have and where

except for the two bigger ones [the cervix one was a surprise and

slipped out in conversation with my GP]. I am still waiting for the

MRI pictures to be sent to me [now at least two months late]. It's

just such an uphill struggle, if you ask it's so easy to be

distracted by other comments and questions, and frankly I am often so

tired that it is easier to give in and not argue. I go in with a

question sheet and still come out with half the questions not

answered. Ho hum, so much for my email address which is a nickname

given to me to describe my normal manner!

Oh my God - the comment about a potential collateral blood supply to

this fibroid, I had not thought of this [and now I am very

depressed!]. Do you have any info to back this comment?

I have an MRI booked for August, when I return from my holiday and

this will be the last time I have contact with the IR. She needs this

for her stats to see the shrinkage [they only monitor shrinkage to

3/4 months]. Perhaps she can explain these to me when we meet, if I

can get the questions in in time.

I have yet to discuss postponing my holiday with my GP and my

husband, although it is beginning to occur to him that this might be

an issue. Obviously my insurance will have to be involved in this -

life just gets so complex. Since my Gynae does not think my problems

are connected with the proceedure, and he wants to refer me

elsewhere, I doubt he will be advising me on whether to travel or not.

I still don't regret this proceedure but I got quite close recently,

it's taking so long to resolve..........

Anne

> > > Anne,

> > > Other women share your symptoms.

> > > Despite the obvious frustration

> > > and angst, there is sharing & support

> > > and pehaps hope on the horizon amongst

> > > all of you?

> > >

> > > If spontaneous or longer term

> > > resolution of your symptoms doesn't

> > > occur--are you thinking of other

> > > medical intervention? Will you get

> > > an MRI at the 6 months mark or sooner?

> > >

> > > I envy your world travel

> > > and it sounds like you've been diligent

> > > protecting yourself. I mentioned it

> > > based on your last post about your

> > > gynae's thinking the pain could be

> > > from somewhere else.

> > >

> > > I'm stumped Anne, please continue to

> > > see your doctors, reporting symptoms,

> > > watch for discharge, low-grade fever,

> > > incapacitating pain..for fibroid expulsion.

> > > ...hoping you don't have

> > > to travel for next several months.

> > >

> > > Is it true that Winston Churchill

> > > coined the phrase, " Never, never give up " ?

> > > Many thoughts for your recovery.

> > > Marsha

> > >

[Guest guest]

Hi Ann,

Just a suggestion: ask your doctor to order a contrast agent

(gadolinium) with your MRI so they can look at your blood vessels. I

believe this type of image is called an angiogram. It should help

them see the blood vessels going to your uterus, and see if your

fibroid is still receiving blood.

On my MRI, you could see a difference in the brightness of the

fibroid before and after the gadolinium was injected, which meant the

gad. was getting into the fibroid via blood.

Hopefully, you won't have a collateral blood supply.

By the way, are you doing anything to help support your liver? (milk

thistle, dandelion weed...) I'm thinking about how you have to take

so many painkillers that your liver has to process.

Best wishes, and keep stormin', norman!

Ellen M.

[Guest guest]

Ellen,

Very sensible suggestions - I can try to get her to do the contrast

thing but I don't seem to have a lot of say in this - in fact I did

not meet her until after my MRI last time so this may be difficult to

communicate!

The milk thistle idea is great - I should have thought about this

myself - thanks I will get going on this asap. I had cut right down

on the painkillers in the past few days but........

I had a severe recurrence of my pain, at high levels, yesterday and

it has carried on all day today. It only took until 5.30am this

morning for me to get rather upset and I went straight to my GP for

some action[i went off storming!]. She has pushed my Gynae into doing

something - he was supposed to be refering me to a general physician

last week but seems to have been trying to speak with my IR since

then. The IR was apparently was on holiday and no-one told him! He

was also considering sending me to a neurologist [i wonder why?].

Anyway as a result of my fuss today he has fixed for me to see a

gastroenterologist next week. He feels my bowels are involved in this

pain. Now he says that the pain before UAE and the bowel symptoms I

was having could be easily taken as fibroid symptoms and might not

be. Given the other fibroid symtoms I was having, which have been

relieved, it seems to have been a natural assumption.

Well the gastro sees me Monday so wish me well - maybe there will be

an answer lurking for me soon.

Now I am back on the painkillers again the dizziness and odd

confusion is back again - oh well it was nice to be suffering so much

less pain for a while, it gave me the thought I moght be getting

better.

Anne

> Hi Ann,

> Just a suggestion: ask your doctor to order a contrast agent

> (gadolinium) with your MRI so they can look at your blood vessels.

I

> believe this type of image is called an angiogram. It should help

> them see the blood vessels going to your uterus, and see if your

> fibroid is still receiving blood.

> On my MRI, you could see a difference in the brightness of the

> fibroid before and after the gadolinium was injected, which meant

the

> gad. was getting into the fibroid via blood.

>

> Hopefully, you won't have a collateral blood supply.

>

> By the way, are you doing anything to help support your liver?

(milk

> thistle, dandelion weed...) I'm thinking about how you have to take

> so many painkillers that your liver has to process.

>

> Best wishes, and keep stormin', norman!

> Ellen M.

[Guest guest]

> Hi Ann,

> Just a suggestion: ask your doctor to order a contrast agent

> (gadolinium) with your MRI so they can look at your blood vessels.

I

> believe this type of image is called an angiogram. It should help

> them see the blood vessels going to your uterus, and see if your

> fibroid is still receiving blood.

Don't be too shocked when you see the price for having an MRI WITH

the contrast agent. I just had a shoulder arthro-MRI and the cost of

the gadolinium was about $500 and that was for just the rotator cuff

which is SMALLER than the uterus!

The MRI was just $1300. So the contrast agent that they used was

about 1/3 of the $1800 total charged.

[Guest guest]

To whoever wrote this: How much more was involved in your angio? Did

you stay in the hospital after? Were you sedated? I'm confused about

how the MRI and angio worked together. Can you give us any more info.?

Thanks! Diane

marcysg wrote:

>

>

> > Hi Ann,

> > Just a suggestion: ask your doctor to order a contrast agent

> > (gadolinium) with your MRI so they can look at your blood vessels.

> I

> > believe this type of image is called an angiogram. It should help

> > them see the blood vessels going to your uterus, and see if your

> > fibroid is still receiving blood.

>

> Don't be too shocked when you see the price for having an MRI WITH

> the contrast agent. I just had a shoulder arthro-MRI and the cost of

> the gadolinium was about $500 and that was for just the rotator cuff

> which is SMALLER than the uterus!

> The MRI was just $1300. So the contrast agent that they used was

> about 1/3 of the $1800 total charged.

>

>

>