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AVM Survivors Network

Uterine AVM?

Has anyone else on this site experienced an AVM in their uterus? I was just diagnosed and I need some advice.

Hi, I also had a AVM in my uterus – very rare, happy to connect. Just saw your posting.

Hi my name is Doris,
I am awaiting a diagnosis. There have been heavy nonmenstrual episodes of bleeding, triggered by trauma and pressure. There is rapid pelvic swelling (up to 20 cm uterus) with a reduction or cessation in flow, and with the most acute epsidoes the swelling is minimal swelling and softness, which heavy bright red gushes alternating with dark clots and dark thicker blood. Foods with hormones and some supplements such as potassium, b complex, c and calcium have triggered an acute episode, and hormones foods always increased menstrual bleeding, which for 11 years was with gushes I was never convinced were a normal period. When bleeding was heaviest I could feel a pulse throbbing. There are no uterine cramps with this kind of bleeding. There is a history are several pelvic traumas, a bicycle straddle injury as a child caused internal bleeding that lasted about 1-2 weeks. As I have recently healed a fibroid mass, last measured at 13 cm, that has been elminated as the cause. I have also had much success healing ovarian cysts and a second smaller fibroid holistically with herbal phlegm transforming formula and acupuncture. I also feel the bleeding comes from one area, and clots are similar in shape and size. I have felt episodes start, with headache, sometimes a blood pressure change, and felt in in my blood and right side by liver.
Apparently the fibroid (visualized on laporoscopy which was unsuccesful for its removal) was a hard mass around dipslaced uterine lining from the injured area of the uterus. I realized a year ago that all of my efforts to heal that fibroid only caused more bleeding and cloting. Birth control pills for 4 years from the onset on fibroid diagnosis resulted in the fibroid growing 7 cm in 7 months. I knew a year ago to stop trying to heal the fibroid as it served a purpose, it seems my body is ready now as it healed in July. The vascular involvement just came to light from a new gyn.
I have recevied results of a coaugulation study that was normal for clotting however I have been working holistically on the blood.
The bleeding must stop. For myself and all other women.
I am interested in hearing your story. I am looking for knowledgeable doctors also.

Sounds like you would have had an MRI at this point? AVM should be quite clear on an MRI, as there is rapid blood flow moving through an AVM – unlike a fibroid. From my understanding of uterine AVMs, bleeding happens only when the AVM ruptures, and at that point there is rapid and massive bleeding which can be life-threatening. In my case, I had a sudden heavy gushing bleed one night, nothing for 24 hours, another massive bleed with clots, nothing for 24 hours, a heavy bleed with clots about 12 hours after that, then nothing for about 24 hours except a fever started. Then bleeding became more regular and very heavy for several days, with episodes of major bleeding/clotting (clots the size of coffee cups. At that point I had lost half the blood in my body and it was rapidly drainign – the only way to stabilize me was to have blood transfusions and immediately cut off the blood flow to the AVM, through an embolization of the uterine arteries. There are other cases from this group who have had bleeds and either were able to wait for embolizations or have not had them yet (or may not need them). Perhaps there is a difference depending on the size and type of the AVM or on where the rupture occurs (vein vs connection between vein & artery?) – not sure on that. AVMs do respond to hormonal changes and AVMs can result from uterine trauma such as a D & C, etc. … hope that provides more information for you – Angela

Hi Angela,
Thank you for your reply. My pcp is unfamiliar with this, the gyn who suggested avm hasnt called with resluts yet. MRI done 2 weeks ago showed multiple flow voids and fibroid healed, the sequencing images were all but one completed and am awaiting specialist to review. Incidentally when I searched the web for multiple flow voids, AVM neuro came up. MRI Jan 2010 also showed multiple flow voids. In the past 3 years, 3 uterine biospies causes the extended hemorraghing. Periods were usually heavy and since 1999 with hemmorrhage. The blood vessells of the female reproducitve system are hormonally sensitive and stimulated every month to grow after ovulation, which is when symptoms were always worse. In January of 2010 estradiol was 1734 and bleeding was from Jan 2010 until May 2010 and then Oct 2010 until Janury 2011, with severe acute hemorrhaging. when the estradiol was at its lowest last year the bleeding stopped, but swelling increased. Since Decemeber I used a wide fleece scarf tied around my hips and lay inverted to slow and sometimes it stops. I used a small food scale to wiegh dry pads to compare to saturated. Gelatine, according to Paul Pitchfords Healing With Whole Foods book, stopped a hemorrhage in December. glue. I often wonder why cant this be plugged up from intrauterine? Surely science could come up with a medical super glue? I recently contemplated with a tube of prep h. After researching it seems that glycerin, an active ingredient, is one ingredient in a uterine bleed remedy though I havent tried it. Yet. Waiting is a challenge, I want this to stop.
This last episode started after pressure on the pelvic area which hurt and I felt blood vessells crunching. It was the first time it was with out uterine cramped and blood poured out. Three days bfore blood labs were normal for fsh, estradiol was lower in 200 range, hematocrit was normal and markedly improved and there was easy bruising. The hematologist isnt convinced about clotting and platellet agggregation problems, however it was explained a normal crit with easy bruising and prolonged bleed is an indication. It could just be that more blood was lost and faster than the body could make it.
There have been many layers to this and I am resolving and adressing one by one. Apparently estrogen levels affect blood clotting as well as factor for type A blood types. It feels like an injury that keeps bleeding as the scab wont stick. May I ask if it has resolved for you? Because of the history of fibroid, which has healed, hysterectomy is suggested. I made my peace with whatever corrective means to stop this, scheduled surgery for hysterectomy and with a second trip to the ed, the doctor wanted to move up the surgery a month closer and the other said no, then it was one delay and interfence after another. I had an almost normal period, with improved fertility factors and then skipped. The next period in May was easy very light and with minor minimal cramp. Then the labs were good, then the pelvic trauma. Bleeding has been since May to present, however there were 24 periods of cessation. July and August were better as horse chestnut and herbal for veins and hemorrhoids, and then glycine helped as with acupuncture.
Also, avoiding hormone foods and I just started supplements made for A blood type which I knew about years ago. Type A blood type blood tends to clott when they get stressed/cortisol increases and have high Vondwildebrandts and other clotting factor, and EGF factors, and with the worng foods are harder time with cell differentiation. Years ago I wasnt aware of avm and no one could ever answer my questions about the blood vessells to the uterus as I always felt that was the cause of bleed, I knew it wasnt normal. How can a uterus the size of a womans fist acquire lining that makes sizeable clots and extreme gushes?
The lessened pressure from the healing of the fibroid (which feels good, I can breathe and move better) probably has resulted in less pressure of the blood vessells, which when I have lost weight bleeding increased and gained weight it has stopped. I am in upstate NY in Rochester, I am looking for doctors who are familiar with this and awaiting diagnosis from the AVM center in Denver CO.
I have learned my body will heal as it needs when it is ready, even if conscoiusly I dont have the clarity, the body unconscious will make every effort to heal. It seems that clots are the bodys way of trying to scab or dam the gushing and unhealthy bleed. I drink liquid iron and alternate with tablets 2-3 times a day, know to stay hyrdated as have had orthostatic and blood volume depletion, which 2 visits to ed untreated.
It seems sometimes that deep space is more explored and higher regarded in science than the million year tested reproductive nature of the womans body and uterus. My acupuncturist reminded me that I come from a long line of successful healthy pregnancies.
I havent been able to find info on hormonal changes and sensitivities with avm. It makes sense, as endometriosis is hormonally sensitive. Dr Oz had a show about the misdiagnosis of fibroids vs adenomyosis and how each treatment is different, tx for fibroids can aggravate adenomyosis. Hormones make that grow also. Many blessings to you. I’m looking for documentation about successful treatments and preserving fertility and successful pregnancies after avm othe vascular treatments. I am grateful for the internet and those willing to share. Many blessings and health to you, Doris.

Your stories are inspiring and really helpful to hear, I was just diagnosed with uterine avm in June of this year. The doctors believe mine was caused by the emergancy csection I had in January. Im on medication now and awaiting further treatment

Still on medication, but woke up this morning with bleeding all over again. All the pills they have me on im not supposed to bleed until september. This is not good timing at all I leave in one week across the country to get married and the hospital says to wait until Tuesday after the long weekend to call my doctor. I just want this fixed before I have to go to a whole different province.

I was also diagnosed with a uterine AVM in June 2008

Hi Doris,

I have not been on the site for a while. Sorry for the late reply. I am glad that others responded though. I had a few episodes of severe bleeding post-miscarriage at 3 months (twice ended up in hospital). I also had a small fibroid. I had to take a combination of blood clotting medication, antibiotics (for a severe infection, because they did not know what to do with me at first), and 8 months off of work to heal. Doctors took the watch and wait approach. I also changed clinics. The theory was that the AVM would close itself off as my uterus contracted back to normal. For me it took a long time (due to the severe infection). I still had issues with my immune system and inflammation after being "cleared". I went to see a naturopath to address the remaining issues. My new doctor says that he will continue to monitor me if I get pregnant again. He does not think the AVM is there anymore, but says that he can deal with it if it shows up again during pregnancy. All I can say is do not give up and try a different clinic if you are not happy with their response. I did a lot of research before I switch though. Everyone is different, so try to find someone who fits with your symptoms. Best of luck!

Good morning- i was also dx with a uterine AVM. The 2 interventional radiologists i saw here in MI are not certain they can treat mine due to the size and the amount of veinss and arteries invloved. I would like to preserve my fertility so uterine ablation or hysterectomy is not an option i would be willing to explore. 1 interventional suggested a balloon cathereter? I am not certain this would be effective from the few case studies that are available on the internet. The 2nd interventional wanted to use metal coiling. But could not speak on how that affect my fertility. I have sent my medical records to Mayo clinic to a team of 3 dr that seem interested in my case 1 of which specializes in fertility. I also sent a copy of my records to a dr albony NY. Has anyone out there had their AVM treated successfully and able to carry a healthy baby? Also what was the method they used to correct your AVM? There is limited research out there and im afraid to agree to an incorrect treatment. Any replys would greatly appreciated. U feel like ur on a deserted island when it comes to these and i cant tell u how many consults ive been too where i kicked out the door after they reviewed my mri i feel like i dont recover from one foot print before i get another one. Or the dr just seem to pick an idea or of thin air and throw it at u its very discouraging.

Hi Martine,

My uterine AVM was relatively small (about the size of a quarter), so the doctors that I saw did not want to treat it. One, they had not dealt with this situation previously, and two, they messed up by not following up and that's how I ended up with a severe infection. So, other than antibiotics and a hand shake, they did nothing. Only when I requested a copy of my medical records to switch doctors did they seem interested in further investigation. I was so fed up with the clinic at that point that I refused, payed for my records, and sought out another doctor. I was able to find another well known hospital with a high risk unit and get followed up there. However, by the time I got into see the doctor there it had already been a year, I had been home for 8 months (leave of absence without pay, because my coverage would not cover me due to the fact that the other hospital was downplaying there mess up), and seeing a natural path. So, at the end of the day by the time I saw my current doctor no AVM could be seen on an MRI. Finally, some good news! He also said that although he did not see an AVM that he would follow me if I decided to get pregnant again, which I am now (4 months). I am still high risk, and show some bleeding in the placenta. I elected to take time off of work for this pregnancy, and my family doctor agreed. I need to do what is right for both me and the baby at this time.

Everyone's situation is different, and most doctors are baffled by the idea of an AVM in the uterus. The best thing you can do is continue to advocate for yourself, don't lose hope, and research doctors who deal with the vascular system. You may be able to find one that deals with both pregnancy and vascular issues in a special pregnancy program for high risk pregnancies. You can ask to see someone even if you are not currently pregnant. Although, you will probably have to wait a long time if you are not pregnant, because unfortunately non-pregnant patients are not as important as pregnant patients. I was really disappointed by this realization, but it seems standard practice. It is better to make sure that you are okay first, before having another go at things. Hopefully, you will be able to find a doctor that will work with you, and that you feel comfortable with treating you. If it is a larger AVM they will most likely have to do a surgical procedure to close it off, but your doctor should know best and advise you accordingly. Continue to ask questions, and make sure that you are comfortable with the decisions being made about your health.

In reference to the fertility issue, that is something that is uncertain. I had to think about it too. I came to the conclusion that I would try any means possible to get pregnant as long as I was healthy and it did not put me at risk in anyway. In my mind there are many options to having a child, not just pregnancy. Although, I am a teacher, so I view children in a general sort of way. Even when they are not mine, I feel the connection and how easy it would be to adopt a child. My husband is not sure he would feel the same, so everyone is different. Everyone has to make there own choices in life and we all experience different realities. I really do hope that you find someone and that you are able to have all your dreams fulfilled.

Best of luck and God bless...

HoneybeeB

Hi Martine -- My AVMS were large -- grapefruit sized. After embolization (with medal beads) they disappeared and I was able to carry our next child to term --he's healthy, 3 months, we had no problems. This was an embolization of both uterine arteries. The dr that managed my pregnancy post embolization thought there were risks because of the medal beads used -- he would have preferred the foam pvc pellets that eventually leave your system, and I know he has used the balloon treatment before during emergency situations. But -- yes, successful pregnancies can happen!

Hi Angela - I'd like to hear more about your experience. I was recently found to have a uterine AVM and had an embolization. I am trying to find more information on the need for further embolizations and future pregnancy. It sounds like your experience was a success. I am also looking for a specialist who has experience with it.

Hi Angela I was diagnosed with avm of uterus I had embolisation done. At the moment I have lower back pressure trying to go on my normal menstrual cycle due to skipping menstrual cycle with the pill I am really scared. How are you doing.

Would really like to connect to all of you on this group to find out if there is positive news with regards to sucessfull embolisations.

This has been very isolating for me…and not knowing what the outcome will be. So scared to have another bleed and worried that my embolisation didn’t work…I have never had lower back pressure when my menstrual cycle was normal…so its a new symptom…I Dont know whats normal anymore.

Hi… I am new to this group and have recently been diagnosed with a uterine AVM. I am 29 years old and was 3 months pregnant with my second child when i lost my little one (miscarried) a few days later I had a d and c. The d and c went well and I had very little bleeding or cramping. But the following Wednesday I awoke from my sleep and was bleeding excessively. We went straight to emerge and after many ultrasounds and an MRI they kept me over night and the following day I was diagnosed with this. They wanted to embolize immediately. I was terrified that this could cause me not to have any more children. The Dr told me to go home and if bleeding got worse to return emediatly. I have another ultrasound in 2 months. They said they want to wait till then to see what my body does. I am so nervous this could effect me having more children. If anyone has a similar situation or has had treatment and carried a pregnancy to term or to birth. Please tell me what you did.

I am 29 and have been diagnosed with s uterine AVM. I was 12 1/2 months pregnant and lost my baby (miscarriage) a week later had a d and c which went well. But the following week had massive amounts of bleeding. This is when I was rushed to the hospital. A few days in the hospital and numerous tests they diagnosed me with a uterine AVM. They are waiting two to three months and then doing all the tests again to see if it’s growing or what method of treatment to do. I curious what methods ppl have done and have still been able to conceive.

12 1/2 weeks sorry

Hi everyone
I see that this thread is over a year old however I thought I would reply anyways since it is hard to find very much about uterine avms online.

I have had three postpartum hemorrhages. The third was the worst and I needed 5 units of blood. They had previously diagnosed me with an infection but after I bled again doctors suspected an avm (although they never actual found it since I was on so many anti-bleeding meds). I had bilateral uterine artery embolization three and a half weeks ago and so far no bleeding at all.

I am still terrified I will bleed again though. I feel safe at home since I live near the hospital but I get so anxious about going anywhere. I canceled my trip down south in April since I can’t stomach the thought of getting on an airplane in case I bleed again.

Did anyone need to repeat the UAE or have
any other procedures? I feel like maybe I should have just done a hysterectomy. How is everyone feeling now emotionally?