Confused and overwhelmed

Types of Avm's Pelvic & Uterine AVM
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Warning : this may contain (a lot) of rambling.

I am fighting to keep my life as normal as possible but the decline, I feel the decline.
But is it all the AVM? I have nowhere to turn, no real information and I am left in the dark. No wonder I am turning into this hypochondriac that I don’t like.

Doctors will either look at me with pity (I think they intend empathy but pity is what comes across: poor you, so sorry blah blah) or they are like so what? nothing wrong here. Admittedly, the so what? are usually paramedics, nurses and general practitioners not the specialists but still, when I have new symptoms they are my entry point, got to deal with them all the flipping time.

I have had 7 courses of antibiotics for UTI with haematuria from October to January. I have made an appointment twice to discuss taking prophylactic antibiotics as suggested by one of the doctors. No joy : first time they didn’t call me for the appointment, second time they sent me a text to say that apparently my number was not recognised (but the text was ok?). When I go to reception with my bloody urine sample, they tell me that I should wait for the doctor to ask for it because UTI are considered minor. Every time, I have to explain that I am different, that I ended up a week in hospital with urine retention last time it was not treated quickly enough. I don’t want to be the drama queen at the counter.

I have reduced mobility due to blood supply to my legs being “diverted” in my abdomen. I am walking less and less, I am limping more and more. I am putting weight on due to the lack of exercise and losing muscle tone. Nobody can tell me if exercise is good or not. Should I push through? Would it actually make it worse because my heart has to pump more and exercise won’t change the fact that I am not getting the flipping blood to those muscles. Plus I feel dizzy when I do too much and get weird sharp tingling in my face and limbs. Not mentioning that to anybody either. They are going to tell me it is stress again.

My vascular surgeon is guessing half of the time. He said that he doesn’t know, not enough cases like me. The only thing I can do for you, he said last time with a sorry smile, is giving you compressions stockings. Oh by the way I have been waiting for my first embo (not the last) for over a year. They want to reduce the strain on my heart before it can’t cope anymore. Lots of “we will try” and “we’re hoping” and “risks” in that last letter but what are my choices?

Plus, I am exhausted. I still work full time, no choice, kids at school/uni. I do very little apart from work but I feel lazy. Am I lazy? Cardiologist said my heart has to work more than the average for everything I do and my reserves get depleted. My brain is so foggy half of the time. 2 masters, 1 postgraduate degree, 3 languages and I can’t retain even the simplest information anymore. Is it my age (49) and the pre menopause? Is it the flipping AVM?

In addition to my regular pain, my lower back has been hurting since the end of last year. Is it the AVM pressing on it? Is it the lack of activity/muscle tone and weight? I injured it two weeks ago and I am signed off work for another week. What can I do to help manage it all? Is it something else all together because I have pain around where my right kidney is too? I am also being sick in the morning on a regular basis ( I have always been but it is much worse) and I am nauseated during the day. I have now stopped eating in the evening from 8pm to 10 am in the morning, that way I am not sick and can have a more or less normal morning. Managed to see the GP for that and waiting for a scan (3 months waiting list maybe?)

Don’t get me started on pain management. Tramadol and codeine make me sick. Naproxen and 16mg codeine is literally all I can stomach. No alternative given. I am lucky that my pain is sporadic rather than continuous and only bad 1-2 days a month during my cycle. But sometimes it’s very bad, oh my god, it’s so bad the maximum dose of Tramadol or codeine won’t touch it. I have been so close to calling an ambulance for morphine so many times. The only thing that stops me is that I know it will not last more than 4-6 hours at a time. I can’t face being like that in the corridors and waiting room of an hospital. So I hold on and sometimes I cry.

The latest thing is , I have had vaginal bleeding for the last two weeks, admittedly in various form and degrees and I don’t know if I should call who to call. I don’t want to bother people for no reason and make a fuss when I am clearly not haemorrhaging. I am fed up of being treated like a nuisance. However, I worry.

I don’t know anymore. I have been declared fit for work and I don’t feel fit for it. I feel like I should have time to look after myself properly and that I shouldn’t feel like a burden to all including the National Health Service. Some days I say come on Nathalie, don’t be a wimp, they are people far worse than you. Some days I am exhausted with the questions and lack of answers. I have to make one appointment for each thing with my GP and it is a nightmare. It is also a nightmare because of these things by themselves are minor and can be explained away. Story of my life, why I was not diagnosed until I was incapable of peeing , bleeding in hospital. They are only looking at one thing at a time, not the big picture. It makes me want to give up.

Sorry for rambling. Just needed to get it out.

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I can’t compare me to you in any way in respect to our AVMs and symptoms, mine was brain, bleed etc. I can however sit back, see what you express and think if that was me, what could I do. A little like a neutral third party, however when we are not being treated properly by any publicly funded systems, neutral might be quite a stretch for me.

Hopefully some others will join in with suggestions, of things to try. I’m going to likely fire out some Canadian jargon that may be slightly different but hopefully provides some options for you to consider. The first thing I would do is find a Primary Care provider, either a GP or here we have (Nurse Practitioner)NPs that are quite simply amazing. I always want someone who legitimately cares, will listen, and will make the referrals necessary, and is not shy in doing so and saying I don’t know. I refer to it as someone whois not marvellously unencumbered by humility! The primary care for me is the basis of all that follows. They can refer to pain clinics, different specialist ie// a different vascular surgeon, cardiologist etc…The fact no one can tell you about exercise seems ridiculous. I don’t know any case where the suggestions would be as much as safely possible, and provide some guidelines. Exercise is health care, the medical system is sick care. I was allowed only to walk, and nothing more strenuous, then slowly progressed over several months to everything except sky diving or scuba diving due to the pressure, I have no interest in either so not a big impact!

I would explore naturopathic possibilities, every little bit helps, although you wouldn’t want to negatively influence one or the other and need to work in tandem. I incorporated frankincense into a diffuser at night as it reportedly helps the brain heal. Did it make a difference? I have no idea, but it was within my control to do and did no harm.

I won’t ramble on longer, but sound like a couple of your local medical folks need a little push. I aways say I am nice until it is time to not be nice…it sounds like it may be time to start pushing a little harder. Take Care, John

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Hello. You are definitely not rambling. I have pretty much the same symptoms and have seen 7 specialist in 10 years. Only one would even consider doing any embolization. Forgive me if I’ve commented on this before.
Yeah, most doctors don’t even know what an avm is. Mine is 4x10 cm now. Symptoms have been getting worse in the last year. Same as yours. Funny thing that a pelvic avm is mostly seen in women. I know exactly how you feel. Im sorry for your pain and wish something can be done.
Im 59 and now know that I have to live with it. It helps a little mentally but not physically. Sometimes it’s a little comfort just to know that you are not alone and you are not crazy. Which I feel sometimes. I hope you find some comfort from your pain. Even if only to ramble. Lol

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@Nathalie , my symptoms overlap with yours so maybe I can help with some of the insights from the last 6 years of hell. I only found out I have a pelvic AVM in the left internal illiac arterial branches and veins last year in Sept 2021. Before that, I’ve had urinary urgency and frequency most of my life and a kidney stone in 2016 made that ten times worse and added severe bladder pain, heaviness, constant 24/7 urethral burning, and my previously painful periods became agonizing. I spent days crying in bed with insane pain after doctors sent me home with nothing after several trips to A&E. I was suicidal.

After a lot of research, I self-diagnosed with interstitial cystitis/painful bladder syndrome because my symptoms and history pointed to that and my urine tests were negative for infection. I only had microscopic blood in urine when I had the kidney stone. I asked for referrals to a lot of urologists, gynecologists and urogynecologists over the years, but I refused intrusive procedures because they refused to promise me pain medication and I just could not take anything more. I tried all the supplements for bladder without success but eventually several medications helped contain the symptoms over the years. This is not the kind of pain you want to treat with as you need medication: low dose antidepressants cause weight gain but are very effective. I’m on 10mg of amitryptyline, 400mg gabapentin (nerve blockers) and 1mg loratadine (antihistamine, which for some reason helps my bladder sensitivity to foods). If I were you, the first step would be to try some of these long term pain meds to get that under control so you can fight the NHS for your health.

After lots of research (I could now successfully defend a second PhD in urology), I became convinced I might have an embedded/chronic UTI that’s not detected on regular dip sticks, which miss 50% of UTIs. Where exactly is your AVM? Mine presses on the bladder and vagina from the left and posterior. If your urinary symptoms are not caused by the AVM, maybe it makes you more susceptible to infection. If your UTI tests come positively occasionally, I’d take a look at this website created by this amazingly supportive and well informed FB group - Embedded/Chronic UTI - to help the many, many women and some men afflicted by the problem Guide to Chronic UTI - Chronic UTI Info You’d likely need a long course of high dose antibiotics rather than prophylactic only. I tried but had to give up because my IBS got very severe. I have meanwhile found out about the AVM so I am now pretty sure it’s not an infection, but the avm and the pelvic congestion it causes putting pressure on all those areas, likely stretching the nerves.

If you believe you do have an embedded/chronic UTI (there’s really no test for it), you should ask for a referral to the Lower Urinary Tract Symptoms clinic at Whittington Hospital in London. They follow this long term antibiotics protocol developed by professor Malone Lee, who sadly passed away. His son and other consultants also treat privately and you can find the details on the website above. What bacteria comes up on your cultures? Embedded UTI are actually biofilm infections with bacteria who managed to hook to the lining of your bladder and have created a biofilm that protects them from antibiotics, hence you need to bombard them for a long time with antibiotics. Some women do well on an alternative to antibiotics - Hiprex - which acidifies urine and cleanses it of bacteria, but it’s a bit tough on the gut and can cause bladder burning for some. I personally tried Chinese herbs and had to give up when they messed up my gut. The website lists a lot of natural alternatives but best to try see a consultant.

On the AVM, I’d ask your GP for a referral to the AVM Clinic at the Royal Free Hospital in London. I’d explain you’re at risk of heart failure and the route suggested has been a dead end so far. They move much faster at the Royal Free. There is an AVM FB group devoted mostly to brain AVM but if you search by pelvic AVM you’ll see my posts and people recommend other consultants as well in London. If one GP does not refer you, try another, and then another. Pester them as often as you can and they will eventually refer you. You are in pain with serious conditions.

I hope some of this helps you. If you’d like to have a chat for more details, maybe we can whatsapp over the weekend. Good luck!

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Thank you for taking the time and for your support. You are right, I need to find better primary caregivers, but here in UK, our choices are limited. Worst of all, the head of my current practice is the clinical director of primary care i.e the director of all local practices. He is also one of the doctors who have dismissed my symptoms twice (before and after diagnosis) as anxiety/stress as it couldn’t possibly be anything else. Both statements have since been proven untrue. I need to be able to sit down with somebody and go through everything, not sure who would be able to do that here. Not GPs, certainly not since COVID. I’ll have a think/ a search, gather my strength and go for it on Monday.

I like the naturopathic suggestions. I use lavender oil to massage my legs and I also sometimes put lavender salts in a very hot bath. I find they both promote circulation and help with the pain.

Thanks again

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Thank you, thank you so so much. I am not crazy! If you have the same symptoms, all those things are linked to the AVM. The relief! I keep wondering am I overthinking it? Adding 2+2 and coming up with 24?

That was a massive help.

The embolisations scare me. It has been made very clear that there are serious risks involved with the procedures on an avm that size and with that flow. I don’t know the size of my avm or how it is measured. I know I got malformities all across my abdomen from left to right. Not having it though, is accepting that I have a life limitating condition…which I do, but I can’t have it limiting both my life span and my quality of life, can I ? Or maybe that is what I need to accept, who knows?

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Pitica, I will look into travelling to London if I don’t get any joy here.
My avm is around my uterus mainly but also my bladder, urethra, vaginal vault and I believe touching on the liver and part of my intestines (not seen it confirmed in writing that part, only through discussion with the vascular surgeon). The report also talks about some of it being actually embedding in tissues rather than merely being around organs. Left internal iliac artery is distorted and as big as my inferior vena cava but I have feeders from the right internal iliac one too. I have amitryptyline prescribed before and I have a 2 week course at the moment for my back pain. It doesn’t suit me: I get tired. even more out of breath. I take loratidine for hay fever but I haven’t had gabapentin.

Thank you for your suggestions, I will definitely investigate.

UTI always test positive for infection. I will look at the treatment you suggested

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I know it’s scary. Everyone is different. I have been researching this for 9 years now and very little data. This is even more rare than a brain avm. But just as complicated. Mime is right off of internal iliac artery. Nothing can be done. I wish all the best for you. I’m taking 10/325 norco to help with pain. It’s the only thing that’s helps me. Other pain meds don’t help or make me sick. It is strong but works. I’m at 4 x daily.
If you have any questions or need to ramble, I’m here.

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Thank you for that.

I do have one question, if you don’t mind. Have you been given any advice regarding exercising? And if exercise has been recommended, are you able to or do you find that everything wipes you out?

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keep strong and positive as this is half of the cure.

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Hi Nathalie,

No need to worry about rambling, rambling is good and this message will probably rumble down the cobble street causing a large amount of noise but may have little substance. But it’s good to travel.

AVM, yup weird things and hard to find information which also means that doctors have a hard time finding things.

My AVM. Well they say I’ve had it for my whole life. I think it ruptured inside itself, which means, in my case the the loop from artery to vein got a more direct path. That increased flow caused a lot of issues but until that happened, I did not know I had it.

My primary issues. Bowel movements are always an issue. Not sure if this is pressure in the rectum or maybe a lack of blood flow to the muscles. In any case, I can tend to strain too much while going. That straining cause the situation that lead up to finding the AVM.

Second issue, my AVM has fused into the wall of my uterus. So when I strain, I cause the little blood vessels to break and I get blood in my urine And yes, call doctor and they gave me antibiotics. Here is where I had a different result. After 10 days of blood, I still had blood in the urine and went back to the doctor. Told him that the antibiotics did not seem to be working and I am actually passing blood clots in the urine. (So during this time, yes I stopped really eating and drinking, I was trying to keep my bowels as clean as possible.) So with that, and the pain, he decided to order a CATscan.

First scan was followed by a second with a contrast dye to highlight the veins and arteries. The scan should show dark and light areas but my scan showed all gray. Thus my veins and arteries had a uniform mixture of O2 and CO2.

This prompted a visit to the Intervention Radiologies. Come to find out that I was diagnosed with the AVM and a candidate for high-output cardiac arrest.

Yes, this doc calls it AVF and I believe they are similar. But endpoint, I did ask about exercise also. I was told to do what felt ok. Meaning, if I walked up a flight of stairs and I was winded and sweating, maybe take it slower. Walking on flat ground from my car to my desk, I felt like I just ran a 10k and would just sit for 15 minutes catching my breath. (Later found that my resting heart rate went from 70-80 to 130-150. And it went over 200 with little exertion.) Asked about a handicap parking, but the doctor said the little walking I was doing was actually good.

Surgery. scary yes. Found what I’ve found, the treatment for this type of AVM’s changed during the 90’s. It went from something they cut out to something they tried to seal up. One figure that I saw was a 95% failure rate on the cutting out because it was so invasive and the high blood flow. Now my doctor told me there was a 5% risk of complication per surgery. (Much better than before.)

My surgeon. I guess I got luck since to fix, it is not a one type event. It took 5 surgeries to embolize mine. The first surgery was basically 5-6 hours under a camera while the doctor took pictures and videos of all different angles of the AVM in order to create a plan of attack on how to embolize it. So it was nothing routine with this and I got a doctor who went the extra mile to study and put in the prep work.

So don’t give up talking to doctors but maybe talk to them about recurring or multiple surgical visit situations. Maybe they want something that is routine. (Also check with University surgical units and stuff.)

Life after? I’m still learning. Body changed some but these surgeries took a year to go through. The physical and emotional drain was hard. My last day felt really good but was short lived since it was 3 weeks before the whole world shut down due to Covid. So I’ve been battling other daemons now but the AVM seems good. My heart rate is normal. I’m can think more clearly. I still watch my food intake and bowel movements.

So hope that this helps a little. The process is long and I hope you can find a doctor who will listen. Ha, see I can ramble too. :slight_smile:

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@Nathalie There are alternatives to amytriptiline that you can try. Because I am very sensitive, I started with about 1 or 2mg of amytriptiline at night and increased to the 10mg over 2-3 months so very gradually. Might be worth trying a similar approach. The same goes for Gabapentin, a full dose will knock you out and you’ll never want it again. I started with 100mg and now just 400mg with 10mg ami and small doses of loratadine are the best pain meds for me.

For the infection, you really need to be seen by somebody who understand chronic UTI. On the NHS, it’s the LUTs clinic at the Whittington in London, but I’d ask to see Dr Raj, who is the main consultant and is more understanding of coexisting conditions.

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Thank you for that.

My avm is embedded in the parametrium, so I guess it is what you would cause fused too? When my intestines play up, I definitely get a UTI, so it could be an explanation in terms of blood in urine. However, it is not the only time it happens. I’d like to find the cause to help manage it. My heart always miss a beat when I go to the toilets and find my urine is bright red. Then I calm down and go into damage control mode.

I have been waiting for my surgeries (3 minimum they said) since August 2020. They had to check more things with my heart due to a PFO and the risk of stroke from non target embolisation so they officially put me on the list in March 2021……

I am starting to get fed up. I have just had 3 days of terrible pain with none of the pain killers doing anything and had to use a walking stick to. manage walking. My luck is that my pain only lasts for 4-6 hours at a time and peaks for a couple of hours. I usually get 4-6 hours rest in between sometime more.

I can manage the pain when it’s outside of the peak hours so I still go to work because I need to.

You’ve given me a lot of hope. My surgeon always says it will regrow despite the surgeries. You seem to be a success story.
Thank you for sharing, it is invaluable.

I hope you can enjoy the world and your freedom a bit more now.

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I am trying to wrap my head around going to London. I am not very mobile anymore and both my husband and I work full time.

There’s a way to do it, just need to think about it. Thanks for all your recommendations.

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Re getting to London (particularly the Royal Free) - if you are not very mobile you might be eligible for the patient transport service. You need to do an assessment over the phone with them but the staff are super lovely.

Just be warned it can be quite a wait for the driver to take you home and the chairs are not the most comfy. Bring plenty of snacks, drinks, and something to watch. Do check it out if you are referred there. They are fantastic at the Royal Free so I would highly recommend them.

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@Writerchick Have they treated you at the Royal Free? Who did the embolization? Did things get better? I hear only praise about them, yet I have to meet somebody who actually got their AVM obliterated and their problems solved. I’m on a few other AVM groups on FB and there are some people with pelvic AVMs like me in the US who have been stable for years after one or two interventions.

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clw

who was yoir doctor/hospital?

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Thank you for that, it was the push that I needed.

I called them and they said to get referred from Birmingham or GP.

I phone the QE in Birmingham and the lady on the phone knew all about me. She said that they are struggling to fit me in as I need two consultants to be available the same day. I have told them that I am looking at getting referred to Royal free as I cannot wait like that any longer. She is hoping to fit me in beginning of May, when she gets the planning, and will call me back no matter what

My husband wants us to wait, my mom wants me to go to London full stop :rofl: I have compromised : if I am not given a date by end of May, I am gone.

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Always happy to help! Will keep all fingers crossed for you!

Got to love those Covid delays. I don’t know if the Royal Free wait time is better, but they are very much on the ball with things once you are in. Like after my first embolisation, my foot (where my AVM is) started turning icy cold. I called them up and within an hour or so they called me back and said I was booked into the hot clinic for the following day. So they are really responsive to issues that are serious and the team are very patient and kind.

Good luck with whoever you go with - do let us know how it goes!

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I am under the Royal Free for treatment. I have Mr Lim and Mr Brooks.

In terms of results I am a rather complicated case as since my bleed in August 2020 I have slowly been developing some nerve issues which flared up very severely after the first round of treatment in May last year. Because of this they won’t go in an perform another embolisation until my nerve problems have been sorted (that last round seems to made it worse so that makes sense I guess). They are now talking about possibly putting me on one of two different types of medication in hopes of shrinking the AVM, rather than another embolisation - but I don’t know when that would come to pass.

I am still waiting for my pain clinic appointment where hopefully this nerve issue will be diagnosed and a treatment plan set up (so long as I have a negative lateral flow test it will be this Wednesday).

I was told by the Royal Free that they work to treat the symptoms of the AVM - and that it can sometimes take a lot of rounds of embolisation to treat it (although sometimes it can work very quickly too).