Anyway, I have so far had two consultants advice and I am awaiting two more. I have been given four (ish) options, five if you include the one that is a very temporary solution. I am going to tell you about all options in the hope people may want to advise or just understand them. My lovely friends are really understanding but as it is very complicated to explain in person it is easier to write it all down for them and then they will know everything there is to know.
Option number 1. Temporary option...Artificial Menopause
They give me an injection of a hormone blocker every four weeks to switch off my hormones and put me into an artificial temporary menopause. This may completely remove my hormone dependant depression but it would give me the side effects of menopause ...hot flushes, irritability, night sweats etc etc and it can only be done for a few months due to a risk of osteoporosis. It is thought that switching off hormones will cause the fibroid to shrink but the minute your hormones come back on it starts to regrow...so basically it is just a test to see how shrinking it affects my symptoms...I feel I am discounting this option unless they want to use it to shrink the fibroid before surgery or to give me a break from my depression for a few months.
Option number 2. Open abdominal myomectomy...SCARY!
My city do not do laproscopic myomectomy (where they do keyhole removal) so this means they cut me open like a c section birth and remove the fibroid this way. It involves lots of cutting and stitching your womb back together sometimes with several layers of stitches. It also has a long recovery time which would be extended for me due to my existing health issues. It can be pretty painful after and you need drains put into your wounds and lots of pain meds which would be a problem for me as I struggle to take anything stronger than paracetamol due to sickness and can't use any anti sickness med. Cutting through muscles and connective tissues in order to expose the womb is the biggest risk for me with my fibromyalgia and the problems with my nerve endings. However, it removes the fibroid and is the treatment most recommended for women who wish to retain their fertility. The fibroid can grow back though and then more surgery is advised. Often more than one incision is needed and they can leave noticeable scars, particularly in me as I scar very easily and I am prone to keloid scarring (hard lumpy scars). This type of surgery also carries the risk of causing pelvic adhesions where tissues and organs may fuse together causing constant pain and fertility issues and possibly ex give surgery to repair the damage. I also believe from research that abdominal surgery carries a higher risk of DVT (blood clots) than other surgeries, so although it is probably still a low risk that is a factor to consider. I honestly do not see me going through this operation as the mere thought fills me with dread. I have been through a lot of procedures but this just feels like it's too much risk for me.
Option 3. Laparoscopic Myomectomy
Only available in Birmingham which is an hour and a bit away from the city I live in, this is keyhole surgery. It has its plus and minus points as all the options do. One major negative for me is that it for me is that it is a bigger distance from my parents and boyfriend and would mean more than one or two nights away. I remember how isolated I felt when I had to stay in Norwich hospital for a few nights following my severe bleed after my tonsillectomy (see my previous post). It was so hard to feel positive and stay happy when you were far away from those you loved. Every hour dragged and it felt like I was never going to get home to my own bed. There is also a chance that by the time it comes to having it done the fibroid may have grown too big to be removed this way and it is also recommended that only a very experienced surgeon undertakes it as like the open myomectomy they have to stitch your womb back together but they are doing it all through keyhole incisions. Last time I had womb related keyhole surgery I had a few problems which have become chronic, permanent problems. They use carbon dioxide to inflate your abdomen to the size of a pregnancy and the stretching of muscles left me in agony. I now have to be very very careful lifting my arms too high and I can't run or the muscles under my ribs go into spasm which is unbelievably painful. This risk is there yet again and is of concern to me. Despite being keyhole it is still pretty painful and has a couple of weeks recovery time. Puncture of the bowel or bladder during the procedure or conversion to an open myomectomy due to complications such as location of the fibroid is possible. There is also a risk of the same pelvic adhesions being formed as with the open myomectomy.
Option 4. uterine fibroid Embolisation
The option I am heading towards despite warnings that it is the most risky option fertility wise. It is called Uterine Fibroid Embolisation (UFE) and it is an image guided minimally invasive procedure that involves making a tiny incision in the top of each leg and putting small particles of a plastic material into the uterine arteries. These particles lodge in the small vessels and block off the blood supply to the fibroid causing it to shrink up to 60% and due to the vessels being blocked it is less likely to grow back afterwards. However, If you are prone to growing fibroid tissue it is possible as with all the other options that you could grow new fibroids and need further treatment. The procedure itself is carried out under local anesthetic and is not supposed to be too painful. The main pain is in the first 12 to 24 hours where you can experience mild to severe crampy period type pain and vomiting. In the next two weeks you may get a fever and flu type illness as the fibroid tissue starts to die off and shrink. It continues to shrink over the next few months and it is even possible to experience severe pain and actually pass the fibroid out of the body, though this is more likely if your fibroid is located inside the womb cavity itself. 1 to 5% of women become menopausal after UFE but it is more common in women over the age of 45 and this is because there is a chance that the particles could accidentally block the ovaries. It also carries a small risk of leading to a full hysterectomy due to an infection in the womb which can happen even six months after the procedure. I am still doing research on this option but it is fairly new so less follow up studies have been done. The two consultants that I have seen in my city have advised against this option due to my age and even the professor in London who prescribed the estrogel to me but I have yet to see the expert in the procedure and his option appears to differ. The obvious benefits of this option are the fact that no huge incisions are made to the flesh or the womb. It also only requires a night or two in hospital so if I did decide on Birmingham it wouldn't be as isolating. However, if any complications arise it's a long trip back and pretty inconvenient.
Option 5. Hysterectomy...full hysterectomy
Pretty self explanatory but due to my hormone related depression and severe pain as well as the combined issue of the fibroid, my consultant said that they would perform a full hysterectomy if that's what I want. This means removing the womb as well as the ovaries as the ovaries are what produce progesterone (the hormone that gives women PMT symptoms). However, ovaries are obviously what you need to have a baby so it's fairly obvious that a hysterectomy totally rules that out.
All of these options mean that I would most likely be advised to avoid a natural delivery if I got pregnant because the womb walls may have been weakened due to the fibroid treatment and therefore at risk of rupturing during the intense contractions of labour. I hate this because if I did ever have a baby I would want to experience the feeling of giving birth. This is for many reasons including the fact that it slightly reduces the risk of Post Natal Depression. They also put me at a higher risk of miscarriage and complications.
I will be honest, I wasn't one of those girls who grow up dreaming about babies and weddings, it was a career I was always focused on (that's why I find it so hard having to give up on most of those aspirations). I don't believe that women were put on this earth purely to have babies and I don't think that is the ultimate goal in life, for me any way. I love my nephew very very much and if I could have him tomorrow I would do but there are many reasons why I am not sure if motherhood is for me. Firstly I have numerous health conditions and I am not sure if it would be fair to bring a child into my life when it would at times be a struggle to look after myself without my amazing parents. However, at the age of 31 I am not sure I want the option removed. I have had so many things and choices taken away from me and this is something that is final and permanent. I am the kind of person that always wants what I can't have and what is to say that a few years down the line that won't happen with babies? I have always admired older Mothers as I feel that they have more life experience and knowledge to pass onto their children so if that's the path I have to take It won't bother me. I would only want one child anyway and lots of celebrities are having babies older now so although it's not without risk it is possible. I have had to do a lot of soul searching the past few weeks and think about things I usually don't. I just want this over with but the NHS can take months to arrange things.
Right now I am heading towards UFE because there is less risk of me worsening my pain and all my other health conditions. Also despite the fact that it says that it is not recommended for people who wish to have any children my internet research tells me that people have managed to conceive and carry their babies until full term. So if I did decide on this I would consider trying to have a baby in a couple of years and then having a hysterectomy to remove my cyclical depression. I have found a specialist radiologist in Birmingham called Dr Crowe and he has performed 2000 of the procedures in fourteen years. I will include his website address at the bottom of this page but reading it paints it in a far better light. I inquired about the price of the surgery should I wish to go private and it was around the £6000 mark so obviously that is out of the question! He does however take on patients under the NHS but I would need my own city's Primary Care Trust to agree to fund it...I am going to fight for that if that is what I decide I want! I appreciate anyone's advice or thoughts on this even though I know that it is ultimately my body and my choice.
http://www.britishfibroidtrust.org.uk/myomectomy.php MYOMECTOMY ADVICE
