My scan results 27 August 2013

I went for an ultra sound on 27th August, one year after my last scan.

The good news is that the tumour has not gotten bigger since the last scan. The tumour is the same size at what it was a year ago, i.e. 8cm x 10cm.

I discussed the results with my liver surgeon. He confirmed that it seems like the tumour has now settled into the size it was before the rupture. We obviously don't know for sure whether this is the size it was before the rupture, but it seems logical that over the past 3 years the blood from the rupture has dissolved/been processed and now all that remains is the 'original' sized tumour.

Again, same as before, my surgeon has confirmed that I am not a suitable candidate for a rescession because the tumour is situated in a very tricky spot (an operation would be very high risk because the tumour is literally surrounded by all the major veins and arteries to/from my heart & supplying blood to my liver, all of which I need in order to survive - he said that if we try and remove it, it would be like trying to change the spark plugs of a car through its exhaust while the engine was running!). He suggested that all we can do is continue to monitor annually.

I am now 38 years old and don't have any children. Although my husband and I are not 'broody', my mom asked me to ask the surgeon whether I could safely get pregnant. He could not give me a firm answer on this and said he was soon going to attend a conference with a bunch of other liver surgeons from all over the world and would make some enquiries about this (pregnancy after rupture of HA) to see what he can find out. (by the way, I told him about my blog and said to him that he must let other patients know in case they are looking for support on line :) I also told him about some of the things you guys have shared with me, much of which he found of interest, for example that many of you are reporting that you have multiple HAs and have never been on the pill. I said to him that I think that we should all be involved in a study to get to the bottom of things.

I also asked him whether he thought there was a risk of my HA rupturing again. He felt pretty confident that I don't have to worry about this because the 'main' blood supply to the tumour was 'cut off' when they performed the embolisation on me. He confirmed that the tumour is still surrounded by many tiny blood vessels the size of hair, but that the rupture was at the large vessel that was feeding it blood and which was more like the size of a pencil (the vessel that was 'shut'/closed by way of embolisation). He said that there is not much risk with the tiny blood vessels surrounding the tumour now. This is such a relief for me because re-rupture was one of my worst fears.

For the first time ever, I asked my doc to take me through what happened when the rupture took place 3 years ago because I always heard all the information 2nd hand from my family and actually didn't really understand everything. While I was in ICU after it happened, I was so drugged up that I couldn't register what was happening. Then, 3 weeks afterwards when I was released from hospital, I was so afraid for the first year, that I couldn't really face it all. Something new he told me which I didn't know is that when I had the rupture, that the bleed was first 'into' the tumour, the tumour 'blowing' up like a balloon until the tumour actually burst, bleeding into my abdomen. He said at the worse part of it, my tumour was literally the diameter of a ruler! After the rupture, it reduced after it bled out and then over the past 3 years it reduced in size as the blood slowly was being processed through my body.

Well I think I have covered everything discussed with my doc, but if I remember anything else, I promise to share.

(holding my breath!...)Some other very significant and incredible news I have to report is that as from the beginning of August (2013), I have been feeling A GREAT DEAL BETTER. I've felt reluctant to share this with anyone because I was just waiting to feel terrible again because I know my symptoms happen in cycles, but I am certain now that it has been long enough to honestly say I am feeling better. My symptoms that were giving me so many troubles and really impacting my quality of life seem to be practically gone. I am knocking on wood here because I really hope this lasts and it is not just a brief period of relief.

I am continuing to keep my diary of everything I do each day (diet, bowel movements, symptoms) to see if I can figure out the mystery of what is going on with me. I strongly suggest you do the same. Keeping a log of everything, religiously, really helps a lot, psychologically speaking, and, who knows, maybe we can learn something from keeping a good record of what is happening to us.

Will keep you posted regarding any further news. Please also keep me posted regarding how all of you are doing. If you have not yet signed up as a follower of my blog please do so now. My dream is to start a proper forum and international support group for all hepatic adenoma sufferers. Keep your chin up and sending all of you LOADS AND LOADS of strength. Love, Ninette

UPDATE FROM NINETTE 18/08/2013

Hi everyone, sorry it has been so long.  I have managed to catch up on the most recent comments posted by everyone. Thanks for all the contributions.  Here is some info I picked up from posters I’d like to share with everyone:

A SINGLE HEPATIC ADENOMA OR MULTIPLE HEPATIC ADENOMAS?

There are woman (and men) who have multiple hepatic adenomas (liver cell adenomatosis - not associated with the long term use of birth control or hormonal therapy/ies ) as opposed to having one adenoma liver cell adenoma associated with the use of the pill/hormone therapy/ies).  For those of you who never took the pill, we need to find the answers regarding what causes this.  Sharing our experiences will help.

One poster has offered some new links for us to read.  I found the following link very informative: Liver cell adenoma and Liver cell adenomatosis - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2023950/

Here is another link on general HA info: http://www.uptodate.com/contents/hepatic-adenoma

OTHER NEW TERMS I HAVE LEARNED

Some of you have shared how you have had:

Radiofrequency ablation (RFA) - http://en.wikipedia.org/wiki/Radiofrequency_ablation

Or

stereotactic body radiotherapy (SBRT).- http://www.radiologyinfo.org/en/info.cfm?pg=stereotactic

As far as I can tell this is a treatment that does not make the HA’s disappear, but damages the cells of the tumour so that they cannot reproduce.  RFA seems to be based on using an electric current while SBRT is based on using radiation.  The two links I provide here will give you more information.  I find the RFA option interesting, but wonder about if that sort of treatment can be used on the larger tumours or just the smaller tumours.  For those of you who have had one of these treatments, please let us know how you are doing and more about your experiences with these treatments.

OUR SYMPTOMS – THERE ARE MANY AND THEY SEEM TO VARY FROM PERSON TO PERSON

Many of us are also sharing our symptom experiences.  It is clear all of us are having loads of symptoms which some doctors often say are unrelated (i.e. digestive and menstrual issues, etc).  In addition, some of us are suffering from pain more than others.  From what I can pick up, I believe it depends on where your HA’s are situated on the liver that may impact the type and severity of symptoms.  For example, if the tumour is close to the gallbladder, it may be impacting the flow of bile (bile helps aid digestion) (see Cholestasis - http://en.wikipedia.org/wiki/Cholestasis) . Also, I have noticed that many of us are experiencing that our symptoms are also somehow tied to the timing of our menstrual cycles and ovulation. The liver performs a host of important functions in the body, it regulates hormones, processes and eliminates toxins, etc etc.  For me it seems to make sense that all of this is somehow connected to what we are experiencing, although we need to be sure to have ourselves looked over to make sure there is no other underlying issues.

RISK OF RUPTURE: IS IT SAFE TO LEAD AN ACTIVE LIFESTYLE?

Many of you concerned about possible rupture due to exercise or leading a very active lifestyle.  I can only speak from my own experience here but there are girls who have posted answers on this so do read through all the comments to make up your own mind AND OBVIOUSLY check with your doctor too! When my rupture took place I was in a meeting at a client’s office.  I am now living (post rupture – embolisation), 3 years have passed and the last time I had a scan my HA was about 8cm x 8cm.  In terms of physical activity, I didn’t do much for the first 8 months after rupture, but after that I got back into doing exercise such as swimming, hiking, mountain and road biking, gardening and yoga.  One poster suggested to stay away from horse riding, boxing and other types of heavy exercise where you might get a blow to the abdomen.  As for cardio, i.e. the increase of blood flow, I have no idea if this could be a cause for increase in rupture.  In my case, I have decided that I will continue to do exercise, but I am just mindful of not overdoing it too much.    

Another thing I think matters, and I know this might sound strange, but I am a firm believer in not wearing tight push up bras and other tight tops/clothing that restrict blood flow.  The day I had the rupture, I was wearing a tight push up bra which I rarely wore due to it being so uncomfortable. 

I also believe that you should try and avoid stress.

MONITORING – CT SCAN, ULTRASOUND, MRI?

My next scan is supposed to be on 30 August (end of this month).  I realized that over the past 3 years I have had so many CT scans and have therefore been exposed to a heck of a lot of radiation.  I have heard different stories about how much is safe and how much not, but I think it is up to us to keep a record of when and how many scans we have and inform our doctors about this.  I am going to ask my surgeon if I can have an ultrasound instead of CT scan this time.  I’ve read up and as far as I can tell, the ultrasound will also be able to pick up all the info I need (i.e. change in size, positioning, etc).  Since I have been getting my scans done at public hospitals in a third world country, the possibility is also there that the scan technicians are not using the equipment correctly and unnecessarily overexposing me to radiation (there are real case scenarios of this having happened in the USA, which is a first world country). 

I believe that CT scans play a very important role in saving lives, as it did in my case, however, for the purpose of continued monitoring, in my case where I have been told the tumour is inoperable, I believe I should limit how many CT scans I have over the years and rather save them for a possible emergency (MRI is of course another option for some people, but a more expensive one. My most recent experience with having an MRI was very unpleasant so don’t plan to have one again soon).

SCANS – WATCH YOUR RADIATION EXPOSURE: http://www.oprah.com/health/Are-X-Rays-and-CT-Scans-Safe-Radiation-Risks-Dr-Oz

ULTRA SOUND – WHAT CAN IT DETECT?:  http://www.webmd.com/digestive-disorders/abdominal-ultrasound

I will let you guys know how things go at the next doc visit.  Last scan was over a year ago so excited to see what’s going on inside me!

ADVICE FROM POSTERS – Please remember that people leaving comments and suggestions on this blog (including myself) are not doctors familiar with your specific situation. I have noticed some people posting comments advising people to take supplements/pills. Please do not do any such thing without consulting first with your liver specialist.  (one also has to be careful about vitamins and supplements as too much or the wrong type can impact negatively on the liver and can also impact hormone levels which may have the knock on effect of encouraging tumours to grow)

Update from Ninette 2/2/13

Wow, something important is happening here with this blog. So many women from around the world going through the same thing. I wish I was a millionaire so that I can quit my job and start a support group full time. I know that this is just a blog and not a proper site and the whole lay out is not perfect for this type of interaction, but hope one day I will be able to offer something better.

I would like to apologise for the long silence since my last post and would like to thank all of you for your contributions. I did not want to post while I was in a bad space. I will respond to each of your comments individually, but there are a few very important things I need to share with you regarding my experience over the last six months. Please read the whole post as some of it might not seem related at first.

Since about July 2012, I have been going through a rough patch physically and mentally, however things seem to be improving lately. Just to recap, I still have the tumour, now about 8cm. In a tricky spot (right in the middle of left and right lobes), so resection not an option at this stage, just monitoring annually.

This particular post might be more interesting for those of you who have already experienced an Hepatic Adenoma rupture. When I had the rupture (Feb 2010), thankfully the bleed was into the tumour itself causing the tumour to blow up like a balloon to almost 16cm+ (not sure what the size was before the rupture because I didn't know I had it until the rupture!). As you can imagine, the last 3 years all that old blood inside the tumour has been working its way out of my system and the tumour has accordingly started shrinking (from 16cm+ to 8cm). Initially the shrinking was happening fairly fast and it seems it has now slowed down. No doctor ever spoke about or could answer any questions about what I could expect in terms of symptoms after surviving such a large internal bleed.

My physical symptoms after the rupture were actually quite manageable, however, starting July 2012 something changed starting with a day where I suffered from severe chest pain for about 12 mins, it then died down and started again for fewer mins and then went away. It was so severe that I went to the emergency room and by the time the staff saw to me, I was over it and they didnt seem to take it seriously. About a month later, in August 2012, the same chest pain reoccured. This time I didn't go to the emergency room and my husband just tried to help me through it. The pain is a 'crushing' type pain, so severe that it takes your breath away, even difficult to speak and had me crawling on the floor in excruciating pain. Thankfully since then, it has not reoccured.

Besides that, I was experiencing bad days more often and it seemed to be somehow cyclacle (in cycles) and possibly associated with my menses and ovulation as it seems to occur mid cycle and about a week before the period (although this is not set in stone as I have had it outside this time too). On these days I feel super exhausted, nausea in the mornings mainly, fading as the day progresses, excessive thirst, a feeling of air stuck inside me, indigestion, achy limbs and torso (a "deep" type of ache) (more in evenings), change in bowel movements (sloppy foul smelling poo sometimes 3 or more times a day where I used to be more prone to constipation), throbbing pain mainly in my right armpit (once or twice in the left too) coming and going.

I was so concerned by all of this (especially the chest pain) that I had many tests done afterwards (ruled out Hytias hernia). The doc did an ultra sound of all my organs (except heart). He found a grape-sized gallstone in my gallbladder. This is when I started to piece things together myself. I learned that there are two types of gallstones (bilirubin and cholestoral). (I don't have a family history of gallbladder problems.) Bilirubin is a chemical that's produced when your body breaks down red blood cells and bilirubin gallstones are caused by there being too much bilirubin in your bile. My logic tells me that with all those old blood cells (from the internal bleed/rupture) that had to be processed, this would have been the cause of the gallstone forming.

There is something else I realised that might not sound important, but trust me, it is VERY IMPORTANT. When all this started in July, I became a mental wreck again (similar to the first year after the rupture). I thought I was dying and simply could hardly function on those bad days. It was a long hard process but I had to realise that I needed to take responsibility and change my mental state in order to get through it. Doctors could not help with answers so I had to start finding them myself. I started a daily diary which I update religiously every night with my symptoms and my diet. I realised that I was generally very out of touch with my body and that I needed to pay attention more and also learn more about anatomy and how everything works inside the human body. When I figured out the bit about the link with the internal bleed from the rupture and my symptoms, it was such a comfort and I had an explanation which I chose to believe in. This has helped so much, mentally.

The only unexplained thing remaining was the severe chest pain (couldn't write it off to gallbladder attack because it was different to that of other people I have spoken to who've had gallbladder attacks). So, I recalled that I had an MRI four days prior to the first chest pain episode (my period started the day after the MRI and ended on the day of the chest pain episode four days after the scan and the second episode occurred 25 days after the MRI and 20 days after the first episode). Now, some of you may roll your eyes about what I am about to say, but I had to find an explanation that would set my mind at ease. I consider myself to be fairly spiritual and am very sensitive to energies around me. I try to avoid people with bad energy because I tend to absorb that. I also am fascinated by the electromagnetic forces that occur around the Earth and our bodies and generally how this impacts life on Earth. I have chosen to believe that the MRI (in how it works) had an impact on my magnetic field. [I had a full upper chest MRI and I am of small build (5foot4 56kgs), it was done at a public hospital and I am not sure about the competence of the staff, i.e. I was in the machine for a long time.]. Now before you think I have gone nuts, check out this video explaining how an mri works.

Another important revelation I had is just what an impact the long term use of the pill had on me as a whole. If you can imagine, the human body is a perfectly designed machine so complex in millions of ways....everything interlinked. For a young girl to start ingesting pills that impact the very way hormones function in her body (before she has even finished puberty) and continuing to religiously ingest the pills daily into adulthood for decades, can you imagine the impact? When I stopped taking the pill when I was 30 years old, it took two years for my cycle to return. My body didn't know what hit it and I actually felt like I went through a type of withdrawal (in considering the symptoms I had). Finally, my menses came back and, this time, I suffered more with cramps, pms and the bleeding was heavier. I was finally experiencing a real period, not a 'fake' one like I used to have when I was on the pill. This brings me back to the symptoms I have been having lately that seem to somehow be linked to my cycle. I found a forum on the internet and discovered many women who are not on the pill and experiencing the same symptoms. This has also been reassuring in that I now feel that what I am going through is not really something to worry about, but more something to manage.

Now, when I have a bad day, because my viewpoint on it has changed and I have explanations that I am satisfied with, I cope so much better with the symptoms and they actually don't feel so severe. I am so anti-medication, but I have cut myself a break and allow myself a mild pain tablet (paracetomol) maybe once a month if I get a really bad day (I avoid aspirin due to its blood thinning qualities as I imagine this is probably not recommended if you want to avoid a rupture). I also found that gripe water (yes, what they use for babies!) helps with the indigestion type symptoms and I also eat low fat plain yoghurt with probiotic cultures (and also take probiotic tablets from time to time, maybe two a month) and try to drink more water (new rule in the mornings is that I am not allowed my cup of coffee until I first drink a glass of water). I also find that exercise helps... but not just any exercise, it has to be something fun, like cycling outside (not in a gym) or swimming or hiking or going for walks,or if the weather is bad, yoga, dancing in front of a mirror to my favourite songs or skipping rope. Even a few minutes 3 times a week helps. So, to recap, it has helped me to: keep a food/symptom diary, stop feeling sorry for myself and becoming proactive (this is a process and if you are not there yet, be patient, you will get there), eating better, light fun exercise, being more in touch with my body and respecting it / myself (trying to avoid stress), enjoying nature/animals (the best healing therapy ever!), still letting my hair down now and again and MOST IMPORTANTLY, knowing that I am not in control of everything... what will be will be. [When you are down and out, try to change your thought patterns,... it is the one thing we are in control of..(our thoughts). Go sit outside in the sun looking at a tree, then repeat inside your head over and over "I am full of life, I am fearless" or other positive affirmations. When you force yourself to move away from old negative thinking patterns, you will be amazed at how you can reprogram yourself. (Also stay away from watching negative tv programmes/reading negative material and when you are researching on the internet, know when to stop and watch yourself in that you try to learn more about how the body works rather than focusing on trying to diagnose yourself with some dreaded disease!)

)

WHAT'S NEXT FOR ME? I am supposed to have annual scans to monitor the tumour but I am not being religious about the timing of this anymore... if it goes a bit over a year, then so be it. The reason I feel this way is because the liver surgeon told me that mine is inoperable, why focus so much on it?

Note: Since I have changed my outlook as described above, my symptoms no longer feel so severe (I guess my focus is not so much on them anymore as they no longer worry me so much, as before when I was being overly anxious and thinking I was dying). I find that the light fun exercise I do and gardening (I'm into growing veggies) and praying/meditation/positive affirmations really help a lot in making me feel good. Keeping my diet balanced and healthy also helps. I realise just how lucky I am, there are people suffering with terrible diseases and all I have is an HA!

Sending all of you strength! Love, Ninette (contact me direct on ninette at mwebbiz dot co dot za

My symptoms

Before the rupture:
In my own experience, I didn't have any localised symptoms that could help me self-diagnose. Looking back, however, I do recall that a few months before the HA ruptured, I experienced a severe 'wind' (pain in lower chest) after having worn snug fitting clothing (wedding dress) [At the time, I wrote it off to all the food I ate at my wedding!]. Atleast 6 months before the rupture, I was burping more often and suffering from indigestion from time to time but I didn't think it could be anything serious (found out afterwards that this can be a sign that there could be a foreign mass such as a tumour that is impacting on digestion/putting pressure on the digestive system). I did however suffer from other symptoms [for a large part of the time that I was on the pill and afterwards] which I feel must be associated with the HA: mood swings (hormonal), irregular cycle, over production of prolactin (hormone), occassional headaches, constipation, times of bloating in the stomach associated with eating (at the time thought it was irritable bowel syndrome), mild nose bleeding (not running, but small amounts of blood found inside my mucous), occassional lack of energy, low libido, inexplicable chest pain, (I think I can recall a few months or weeks before the rupture that at one point I experienced inexplicable skin itching (no sign of insect bites, just itching) etc

During the rupture - refer Q&A section

After the rupture
It has been a long journey for me since the rupture and I have experienced a wide range of symptoms/side effects at varying degrees with the lapsing of time (including most of the ones listed above). Notably, I still have the following symptoms: pain (at tumour) from time to time (different pain sensations, sometimes an aching, sometimes like needle pricks, etc); excessive thirst, mood swings, headaches from time to time, lack of energy, irregular cycle, nausea from time to time, indigestion/burping, low libido, inexplicable chest pain, from time to time. All of these symptoms have generally been reducing with time. When I was released from hospital 3 weeks after the rupture took place, all I could do was sleep. I had more pain then but was able to stop taking pain killers after about 3 weeks. The most difficult part was the emotional / mental side of going through this ordeal.

My experience (ruptured hepatic adenoma)

22 July 201

I had an MRI on 16th July 2012. Doc called me with results but I haven't seen him yet so will only give a brief update here. The tumour has not changed much in size since my previous scan approximately 14 months ago, although the doc said it is "a little smaller". He has made it abundantly clear that it will be too risky to operate right now and says we should continue to just monitor. The tumour is in a really tricky spot in the middle of all the major veins/arteries which distribute blood to and from the heart, so operation to remove not recommended. Will write more soon. Had a tough weekend because on Friday I had unexplained severe chest pain. Went to hospital, but pain stopped and the people in the emergency room didn't think it was anything to worry about (allergic reaction to food or indigestion??). I am just worried because the pain was so severe, in upper chest, crushing pressure like pain also shooting into my back (mom thought it might be after effects of the MRI??). I've felt on and off weak, nauseous and just unwell this whole weekend... maybe it is unrelated or I am coming down with something like the flu?? not sure? I am going to try and arrange an urgent appointment with my liver surgeon and will let you know how it goes.
12 May 2012

A long overdue update: It is almost my 37th birthday. I was meant to have my next scan in Feb (2012), but that never transpired. I was reluctant to have another CT scan because I have read that one shouldn't have more than one a year due to radiation exposure. I was having more than 1 a year up till now. So I asked my doctor if he could rather arrange an MRI at the public hospital (discounted rate). The waiting list was not surprisingly long so my next scan is now set for 16 July 2012. Lately, I have been experiencing some bad days. The indigestion has increased accompanied by burping and nausea, an empty stomach feeling, constipation, inexplicable chest and colon / tummy pain, etc etc (very similar to the symptoms experienced when I came out of hospital). I seem to have spells that occur about once a month (last 2 or so months) for a few days at a time (about 3 or 4). The rest of the time i still experience the indigestion systems and nausea, but not that bad. So, I guess I have been a little bit worried, but so much. I am just eager to have my next scan to see what the heck is going on. It seems to be more of a digestive system problem so not sure if it is even related to the HA, although I somehow think it is. I still experience liver pain from time to time but it is pretty mild. I am starting to keep a diary of my symptoms to see if I can puzzle together the pieces of what is causing it. Perhaps it is my diet? I have been 'letting go' a bit over the easter holidays, i.e. eating richer foods and drinking one or two glasses of wine on Friday and Sat nights. So, I guess I am just going to have to pay more attention to my diet again and see if that helps. Although the above sounds bad, I am otherwise okay and coping well with work and very strong, mentally and physically. It is just on those bad days when I am down and out... about 3 to 5 days in the month. I am also wondering if there is a link with my menstrual cycles and this. I am a believer that everything is linked, especially when it comes to issues of the liver (the organ that regulates hormones in the body).My menstrual cycles have not been as regular, arriving later than usual lately. So, yeah, something is changing inside, but like my hubby says, I must 'roll with the punches'. Sometimes we have to feel worse before we get better. Will keep you posted. xx

30 December 2011

I turned 36 in June. I had one more CT since the last one listed below. I must dig up to check what the date of that one was. I was meant to have one in October 2011 again but I've asked doc if we can postpone until Feb 2012. Will let you know how that one goes. I've been feeling fine and still get pain once in a while, but I am a 'healthy' weight again and my menses have returned and are much heavier now. I find that when I am stressed, my pain returns so I know that stress must be avoided! When I do get a pain, it is really not that bad. It just makes me worry, that's all.

06 January 2011

I am now 35 years old. It has been nearly a year since I was diagnosed as having an hepatic adenoma (was aged 34). I never knew I had it until it ruptured causing an emergency situation in which I had to be rushed to hospital.

Today I still have the tumour inside of me. My next scan is scheduled for 11 April 2011 and will then be able to give you more news regarding further progress.

Last CT Scan was on 26 August 2010:
The tumour is now 8cm x 8cm, so looking back, here is the progress:

At 26 August 2010: 8cm x 8cm
At 6th May 2010: 15cm x 12cm x 11cm.
At end of March 2010: 16cm x 13cm x 13cm.

This means it has shrunk by approximately half its size since end March (in 5 months). [in terms of volume, one fifth of its original size!]
[Bear in mind that much of the shrinking, up to this point, is as a result of the disappearing/dissolving of the old blood from the internal bleeding that took place when rupture took place. I am not sure what size the tumour was before rupture/internal bleeding took place.]

Here is my story:-

On 8th February 2010 I was rushed to hospital with severe abdominal pain and a distended (raised) tummy/abdomen. Prior to this date I was a healthy 34 year old female living in South Africa.

I had to undergo many tests that night and the following day before the doctors diagnosed me with a ruptured hepatic adenoma. A hepatic adenoma is a benign tumour on the liver and in most cases (90%?) it is associated with long term use of the birth control pill. In my case, this was most certainly the cause as I had been on the pill for about 15 years of my life.

What had happened on that day was that a blood vessel inside the tumour ruptured causing internal bleeding (within the tumour). This caused the tumour to expand like a balloon filling with blood [internal bleeding] (hence my large tummy/abdomen and severe pain). Prior to this event, my tummy/abdomin was flat and I had no idea that I had the tumour.

The doctors had to perform an embolisation to stop the blood supply to the tumour. I also had to receive two blood transfusions due to blood loss. The embolisation procedure was successful. Now that the blood supply to the tumour seized it was now possible for the tumour to shrink in size. I still had to be in Intensive Care for two weeks so that they can monitor me daily to ensure that the bleeding had stopped, etc and to ensure that all my blood tests (liver function, white blood cells, etc) started returning to normal. While in intensive care I underwent lots of other struggles which I will not elaborate on here (severe reaction to pain killers and antibiotics, lack of appetite/weight loss, sleeplessness, etc).

Finally, they found a painkiller that I didn't react to and my recovery started. After two weeks in ICU, I was moved to a normal ward where I stayed for one more week before I was released from hospital to continue my recovery at home.

The tumour casing (including the blood filled area) was huge (18cm). The doctors at the hospital I was admitted to said it is the largest they have encountered. They decided it was too risky to operate and remove it straight away and rather opted to do the embolisation and to give the tumour time to shrink (and for all that blood to dissolve).

19 June 2010:- I am still at home, doing much better, but I still have not had the operation. My last scan to see if the tumour has shrunk was in the beginning of May. That scan showed that the tumour had shrunk to a size of 15cm x 12cm x 11cm [the previous scan done in March? 2010 showed the size as 16cm x 13cm x 13cm]. The doctor said that he was going to consult with other doctors overseas about the way forward (wait longer to operate or operate now?). We now await feedback from the doctor, but we assume that it has been decided (for the time being) that it is in order to wait until the tumour shrinks further. I will phone the doctor next week to follow up.

When I came out of the hospital I stayed in bed for the first couple of weeks just sleeping alot. I had lost lots of weight and needed to get my weight up again. I've never been that much over weight (maybe just 5kgs), but now I needed to put back that weight that I had lost. This has been pretty difficult. I have gained a few kgs over the past few months but am still not at the weight that I used to be.

I am working again and have been working for a long time now (started working very soon after I was released from the hospital). I am blessed enough to be able to do most of my work from home.

I have changed my diet slightly, although the doctor didn't say that I had to. I am 'juicing' now about 5 times a week (I make juices from fresh celery, apples, beetroot and carrots, etc). I also have reduced my meat intake. I've also tried to incorporate light exercise atleast 5 days a week.

You are probably wanting to ask me now about the pain. Well, aside from the excruciating pain I underwent on 8th February and in the hospital in the days that followed, the pain has not been so bad otherwise. The biggest struggle for me has been the emotional/mental side of it (and the reaction to the painkillers!).
As for the emotional and mental side of it, I get my good and bad days. The bad days are REALLY bad. I can't describe how bad it is but to put it mildly it feels like the end of the world and that there is absolutely no reason to carry on. If you have gone thru a similar experience and you feel like you are going crazy, know that you are not alone and that you are not going crazy. There are small things you can do that will help. I didn't want to share my anguish with my hubby because I had already put him thru so much hell with this. But finally, I agreed to start talking to him more about how I feel from day to day. He said that he would rather know what I am experiencing than not know, no matter how terrible it is. This has been such a great help. If I feel a certain way one morning, I tell him. This helps so much. Talking to other people also helps. People that care, of course. And it especially helps to talk to people who have also been in hospital or who have also had a traumatic physical experience. It doesn't matter if it was a different type of illness because on the emotional/mental side of it, the symptoms/experiences can be very similar. Another thing that helps is prayer. I felt that I completely lost my faith in G-d and I am still struggling with this. But over the past few weeks it has been a bit better and I pray every morning in bed before I get up. Also, my dad has given me a new motto to live by. He calls it "Odaat". This stands for "One Day At a Time". The key is to stop thinking ahead or looking back but to rather just live in the now (read Eckhardt Tolle's books). When having a bad day, just remember this saying and also know that no matter how bad it feels, it will end and it is just a feeling. Also, the biggest help is to have people in your life that love you unconditionally. I am very blessed in this regard. I just need to get over the guilt of putting them thru this.

MY MESSAGE TO MEDICAL PRACTITIONERS

I thought it necessary for me to include a post, specifically addressed to medical practitioners, regarding my experience with doctors prescribing contraceptive pills / hormone therapy as, not only birth control, but also a treatment to regulate menstrual cycles and to treat acne. Every doctor I met promoted the pill in a manner that makes one believe that there are no side effects to be concerned about. The doctors never asked how long I have been on the pill or never checked contra-indications with me. They never told me that it is not advisable to take the pill for long periods of time. I know it is our responsibility to read the fine print on birth control packages, but I still feel that doctors have a certain responsibility to warn their patients about the risks. Some of the pill inserts state that side effects are very rare (1%), but I am sure that this figure is inaccurate based on the high incidence of HAs occuring in women using contraceptive pills over extended periods of time. I could not find any inserts which warns against long-term use of the pill.

My history with doctors prescribing contraceptive pills
I started my menses at the age of 12 and had no problems up until after I was 16 years old. At the age of sixteen, I became sexually acvite. At the time, I was living in the United States and it was very easy for me to go to my local "PP" to obtain free birth control pills. Shortly after this, still in my teens, I started experiencing galactorrhea. I went to the doctor and the doctor found that I had elevated prolactin levels. I stopped taking the pill to see if this would resolve the problem. I then started experiencing amenorrhoea (menstrual cycle ceized/stopped). I was then told by the doctor to start taking the pill again. When I was 18, a doctor diagnosed me with 'indirect evidence of a micro-prolactinoma' and prescribed [...] and stated that I should go for a follow up scan in a couple of years time. After reading up on it, I decided not to take the [...]. I had a fair amount of acne as a teenager and as I hit my twenties, my acne became worse. I consulted another doctor who suggested I change the pill I use to another type which will help with my acne. I did so and continued taking this pill (or the generic version of it) up to the age of 30. In conjunction with this, when I started this new pill I also underwent brief treatment with an anti-androgen drug. I eventually had two more scans following this (one CT scan and then an MRI several years after I stopped the pill). Both showed no evidence of a prolactinoma, although my prolactin levels remained elevated (fluctuating), but not as high as before. When I stopped taking the pill (30 years old), I waited almost two years to see if my menstrual cycle will return naturally. It was hell coming off the pill - I think I can compare it to going through withdrawal. When my cycle did not return, this was the time when I had an MRI scan which confirmed no prolactinoma. The doctor suggested that I go back on the pill to help re-start my cycle. I refused to do so. I then read up on some natural alternatives and through changing my diet slightly/vitamens, I was able to get my menstrual cycle to return. About a year and a half later, the HA ruptured. At no stage in my medical history did a doctor examine me to check for the possibility of an HA.

There is no denying that up until now contraceptive pills have largely been promoted by the medical fraternity in the same fashion as condoms and topical acne creams are being promoted. I would like to plead with medical practitioners to exercise care when prescribing contraceptive pills. Advise your patients about the real risk of taking contraceptive pills for extended periods of time.

I would like to end by thanking all of the doctors that played a roll in saving my life when the rupture took place by making the right decisions during that critical time.