2005
My story with fibroids began in 2005. I had been ttc with my then partner for about 18 months with no joy. We (I) then began going through a number of routine tests including a HSG and an ultrasound. During the ultrasound the sonographer said "Oh, you have a fibroid" I asked if that was bad as I had never heard of fibroids before. I can't remember now what her answer was to that question but I do remember her saying "When you have one you often find a number of them lurking around in clusters!". I can remember not feeling too great about the diagnosis but little did I know what was instore for me over the years, culminating in my myomectomy 6 years later..............!
At the time of diagnosis my fibroids gave me zero trouble and if it wasn't for ttc and the subsequent scan I wouldn't have found out about the fibroids until many years later. I think I am glad that I found out about the fibroids early on as a it gave me a chance to get to come to terms with the side effects of the condition, research and also gave me a long time to get myself to a place where I was comfortable with having the myomectomy surgery. I don't know how I would have coped if I had only had a number of months or a year to digest everything.
2006
In May 2006 I had a hysteroscopy to remove 1 fibrbiod which was in the cavity of the uterus. This surgery came approx 2 months after the end of my then relationship. During a tearful heart to heart I spoke to my mum and blurted everything out about ttc and that I had between 3-5 fibroids. She was shocked when I told her as she had no clue we were ttc and that I had been going through all this. She was brilliant. She also had a shock instore for me when she told me that fibroids were very common in our family (afro caribean) and that she also had one which had had no affect on her fertility.
The date of the operation came and I was understandably nervous. The proceedure was a fairly simple one with a small amount of risk of haemorage. I can't remember how long I was in surgery, which was carried out under general anesthetic but I think it was probably about an hour. The surgery went well and I was shown the resected pieces of the fibroid (at my request) when I came round from the anesthetic. One of the things I remembered the most about the surgery is that I was so sick when I tried to eat a piece of toast and drink a cup of coffee a couple of hours after waking up after the surgery. I also remember feeling absolutely shattered!!!!
I recovered quickly from the proceedure and had not issuses with the fibroids. The painful periods I had occasionally experienced had gone away and I just carried on with life.
2007
About a year later I had an amorous encounter with the same ex and ended up getting pregnant. I was shocked! After trying previously for so long it was sods law that it would happen when we were no longer together and had moved on. I really do think that the stress of ttc and all the medical tests and constantly seeing friends and family pushing out babies left right and centre put an incredible strain on our relationship. A couple of days after I found out I arranged to meet him to tell him however fate had other ideas and the day I was due to meet him I miscarried. We still met and I told him what had happend. Not an experience I care to repeat ever again in my life. I was in so much pain both physically and emotionally.
2008
About a year later I noticed that the largest fibroids which where located on the right hand side of my uterus where actually palpable when I touched my abdomen. I was concerned that the fibroids were growing! I went to see my then doctor a couple of weeks later and had an awful experience with him. He was unhelpful, unsympahtethic and just plain horrible. I asked for some tests and a scan but made it clear that I did not want to have them removed, I just wanted to find out a) if they were growing and b) if so at what rate. He replied by saying that they are growing. They are growing. But if you are not going to have them removed what is the point in the scan and tests? What a fucking dick!!! I don't really want to swear but that is what I thought I was so flipping mad! So mad infact that I have NEVER EVER seen that doctor again. Luckily he shares his patients with another doctor who is female and luckily I think she is the greatest doctor I have ever had. She is great and has helped me so much with all issues relating to my fibroids and is always so accepting and ready to listen and give her advice. I am lucky to have her as my GP!
Anyway..........
I went for the tests and the scan and after receiving the measurements I recieved the confirmation that the fibroids had grown. I told the sonographer about the way my male GP had dealt with the situation. She advised me to go back to my female doctor and ask to be referred to the gynaecologist in the local hospital. I had never ever been advised that this was a possibility. Again, my male GP is a dick!
I was referred the the gynaecologist where my fibroids were monititored closely with regular internal scans and appointments. Whenever I encountered any issues with my fibroids I could now either contact the hospital or my female GP.
2009
I think I managed to get through the rest of 2008 without any real issues however I think it's likely that my periods were probably getting a little heavier during this time through to the begining of 2009.
By April 2009 I was experiencing increasingly heavier periods and bloating. The size of my stomach was beginning to become a problem to me. I have always had a bit of a pot belly but this was something else. My pot belly I could suck my stomach muscles in and it would be flat but not anymore. I realised that it was probably the fibroids but I was having way too much fun in my personal life partying and dating that I just ignored it and moved up from regular tampons to using super tampons and a pad 100% of the time during my period. I was able to handle it so that's exactly what I did.
In November 2009 I went to the gynaecologist again as I was gearing up for a month long holiday in Barbados and I really did not want my periods to get in the way of my trip. This is when I was first introduced the drug Tranexamic Acid and the progesterone only contraceptive pill the latter I was to take continuously whilst on holiday. I took this to reduce my period. I don't think I took this medication right. My consultant told me to take it whilst I bled (which could be up to 9 days at this point - 7 days bleeding and 2 days spotting) and my GP and websites said to take it for 4 or 5 days. I was confused so I just took it at the start of the period and whislt I was bleeding heavily. During my holiday I spotted occasionally but nothing major and most importantly my holiday of a lifetime fun was not spoilt!
2010
At the beginning of 2010 I was still taking the progesterone only pill (Cerazette) as it was working to control my periods and make them a little less of a monthly drama.
One thing that had made coping a little easier over the past 4 years was the fact that I was single. When I encountered issues with my period the only person that was affected was me. I only had to consider me and my feelings so I could do that easily. This all changed when I met my boyfriend at the begining of the year.
At first my cycle was not an issue, as I mentioned before, I was still taking the progesterone only pill. At the beginning of our relationship I experienced a wonderful 6 week cycle with no period. I only started experiecing issues after that 6 week cycle. I would have a period the stop. Then after a week or maybe two I would start bleeding again. Sometimes this would be triggered by doing the deed. It was an awful time and so embarassing and so not the kind of thing you want to be going through at the beginning of a relationship. Luckily he was and continues to be very understanding and supportive. I had more tests, and more scans where another large fibroid was discovered apparently sitting behind my largest fibroid on the right hand side of my uterus! OH THAT'S GREAT NEWS!!!!
I was put on a different progesterone only pill (Micronor) and was told to either switch tablets or to take two of the Cerazette tablets. Neither of these options worked for me and it was a truly dreadful time. I put up with it for a few months before being forced to tearfully with no other apparent options, ask for a surgeon to perform a myomectomy. I did not feel comfortable with this decision but still felt there was no other option for me at this point. I was getting too many symptoms from the fibroids and I felt it was also messing with my sex life and to me that was unacceptable.
I quickly recived a date for the operation for 17th January 2011. As a contractor, I specified a date in the new year which would be after the end of my contract so as not to miss out on a wage. I was still hyper hesitant at this stage to go through with the op and this was signified by crying every time I went to the doctor or visited the hospital or spoke to friends or family about it. I knew inside that I wasn't ready. I hadn't even discussed my condition with my boyfriend at this stage! I decided that I would try some natural remedies during the 6 month period before my scheduled op and see if I could shrink the fibroids. I tried apple cider vinegar mixed with water and bicarbonate of soda or juice. I don't really care for the taste so could never keep it up and be consistent with taking it. I also tried drinking red raspberry leaf tea which helped with the bleeding but I stopped taking this due to the eoestrogenic properties of the tea. I also tried black strap molases but hated it. I tried vitex but could never be consistent. I am the worlds most rubbish person at taking pills. This is the reason why I started taking the depo contraceptive shot in my youth (I actually think this could have been a stimulant for the fibroids although I cannot be sure).
I had my blood levels checked for iron and the levels at this point in time were okay and no cause for concern.
Needless to say that with my inconsistency with the natural remedies, my problems with the fibroids never got better. Infact they got progressively worse with me graduating to super plus tampons and wearing a pad throughout the entirety of my period to help prevent embarassing leaks - of which there were still many. Another problem I encountered was clots - lots of large clots. It was awful. It was like the clots would store themselves in my uterus and bleed and bleed and then when my poor tired uterus finally managed to push them out the bleeding would stop for a day or two and then start again with a vengence. The length of my period increased from an original 5 days (3-4 day s bleeding 1 day spotting) then to 7 days (5 days bleeding 2 days spotting) then 9 days (7 days bleeding and 2 days spotting) to now being 10 days (4 days bleeding 1 dry day then 5 days heavy bleeding and 1 day spotting). I knew that things were not getting better and that maybe I would have to start to consider going ahead with the surgery.
I received a note in the post to attend pre op clerking in mid December 2010 and it was then that I decided that I still wasn't ready. At this point I was still taking the red raspberry leaf tea and it was working so I thought I could manage so I cancelled the surgery.
2011
I managed to get through the first month of 2011 without too many new issues but yet the heavy bleeding still remained. I was no longer taking the progesterone only pill as I had stopped taking that by Summer/Autumn of 2010 due to the breakthrough bleeding which I just couldn't stand.
By February/March my periods were now much heavier and much longer. They had managed to eek themselves out in all their pouring glory to 14 days (1st day light, 2nd and 3rd days heavy, 4th day no bleeding, 5th-10th day heavy 11th - 14th day spotting) it was hell!!!!! I hated it and I hated my body. I wanted a new one that worked properly!
I had an incident of two separate but concurrent weeks of being ill with sickness and diaoreah once on Sunday night and once on Monday night. I made an appointment for the doctor and she ordered some tests. I asked her to check my iron levels too whilst she was at it. A day or two later I received a concerned telephone call from my awful male doctor sounding very concerned. Basically it was a surprise to them that I was still standing, as my haemoglobin level was at 2 and it was a surprise that I hadn't collapsed. Apparently the body is a wonderful thing and as the drop was gradual, my body had been able to cope with the appaulingly low level. I was put straight onto iron tablets (ferrous sulphate) and had to take 3 a day. I managed to do this for two weeks and my level went up to 7 or 8 but I lowered my dose after that to 2 tablets a day as they made me feel really nauseous.
Whilst I was going through all this I still had to face comments about children, i.e. when are you going to have some and oh when you have children blah blah blah. I know the comments are meant well but it doesn't help you to feel positive when you know that at this moment in time the only thing capable of growing in or on your womb is sodding fibroids! I didn't care how many people had good stories etc about having children whilst having fibroids I knew it didn't apply to me so put it to the back of my mind. For me my focus is getting well, having normal periods, having a normal iron level, stopping my hair falling out due to the low iron (ferritin levels) and getting these fucking things out of my body! I don't need to be thinking about babies too on top of all this shit I am having to deal with. I will deal with that later if I am lucky enough to get out of this thing with my womb.
By April 2011 I had another impending holiday to Barbados coming up which nicely coincided with a period. An 8hr flight and a heavy period is not something I could contemplate dealing with. It would be awful and I don't think I would be able to cope. I hot-footed it down to the doctors and was introduced to the wonderful drug with not so wonderful side effects Utolovan. This drug is used to stop your period coming if you are due on and not on the pill and have a trip planned or a special even such as a wedding where you would obviously not want to be on your period. You take three tablets a day at the same time every day and you can take this for 2 weeks without spotting. It was great! The only downsides for me were the weight gain and the mood swings. I felt really ratty whilst taking this and this got progressively worse with each month of taking the course of tablets but with that said, it was worth it to get some freedom from my 14 days on 14 days off cycle. It really did help me alot and actually helped me to remember what a normal period was like, although I did have really heavy bleeding for 1 day of the cycle the rest were manageable and the period lasted a week including spotting. Result!!! I wish I had known about this tablet before, although I would probably be about 22 stone now instead of just under 10 stone which is half a stone heavier than I am normally. I will be working to lose that weight soon!!!
When I came back from holiday I stopped taking the Utolovan and had the mother of all periods. It was at this stage that I decided to (again tearfully) go ahead and have the myomectomy. I may have been tearful but I knew I would go ahead with the operation this time. The benefits to me were worth the risks although I reallly really really really really wanted to keep my uterus. I was scared witless but I only had one or two cries between the day that I left the doctors surgery after making the decision to have the op and actually having the operation on 22nd August 2011.
I will write a separate post on the operation and my experiences but what I can say is so far so good. It was the best decision for me to make. I kept my uterus. The op went well and I am recovering nicely.
I hope this blog helps someone out there and if you have any questions, please do feel free to ask me as I will be happy to answer you. Going for this operation is a scary thing but in my experience the fear of the unknown is far worse than the operation itself and the recovering afterwards.....although at the point of typing this page I am 2 weeks and 1 day post surgery and not feeling too bad at all. I am mobile, in minimal and manageable pain from the surgery and I have an okay looking scar which is healing nicely. And the best part of all is that the fibroids are gone. Well most of them, I still have one in the cavity which needs to be removed once I've recovered from this op but that's okay with me.
'Hoping to be fibroid free'
Tama
