Hi Angela,

I hope that all is well.

I'm a bit better this week thanks. The infection seems to have cleared up a lot although it has not gone altogether yet. Was on the antibiotics for five weeks and am feeling quite drained. I finally managed to get an apointment with the hospital and will be going to see them next week.

Kind Regards
Roz

Response to Roz

Sorry for the delay in responding about the book. I've been waiting for a couple of weeks to get a response from Catherine Bouvier about a note on PRRT which I've done. Maybe she is on holiday. I was going to use whatever method she proposed about uploading the PRRT note as a resource to do the same with the book.

Anyway, I can e-mail the book to you directly if you prefer. My e-mail address is tim@teamtalent.co.uk.

Glad to hear you are making progress on the infection front. It must be a bit of a downer to get that on top of everything else. Keep your chin up.

Regards
Tim

Hi Roz,

Glad to hear you are feeling better and, hopefully, fingers xed, on the mend. You've certainly had a tough time of it. Well done on making the hospital give you an appt. Sometimes it feels it's all "water on a stone", esp when you're bone weary anyway. That's what I feel like with all the difficulties. I've had another PET/CT scan now and I'll see Martyn Caplin in Oct. about PRRT.

Keep well honey and Nil Desperandum! :-)


Angela

Hi

I came across this wonderful website and glad to read people have gone through the same op as myself. I am 32, had a son last year but was very jaundiced. It took 16 months later before I got more symptoms of liver problems with my bile ducts blocked and bilbrubin was building up in my veins and making my body itch from head to toe. I seen my doc who thought i might have an allergy with all the scratching but blood tests showed I had high liver enzymes and liver damage due to the long term use of the contraceptive pill. Had all the scans and the MRI confirmed I had a large benign tumour on my left lobe of my liver. Had my surgery it was complicated took 7 hours, removing my gall bladder also and I lost 4 pints of blood. Here I am 3 weeks after the op and I am still in pain but every day I am getting better. Wishing you all well with your ops and your future health.

Hi Tim,

Thank you for you reply. I hope that you are well. I will be contacting you via your e-mail address and am looking forward to reading your book.

As for me I am finally on the mend. Infection has cleared up now and I am left with itching that is totally driving me crazy. I know that I am finally healing and should not complain. I went for my first mri since I had my operation today. I should get my results in a few weeks time. Fingers crossed that I all went well.

Best Wishes
Roz

Hi Angela,

Thanks you for your message. I'm glad that I am finally off the antibiotics and infection seems to have cleared up. I feel like I'm on the mend. My scar seems to be healing ok although some of it is still very raised. Good luck for your appointment this month. Please let me know how you get on.

Kind Regards
Roz

Hi Sarah,

I hope that all is well. I also came across this website while I was doing a bit of research about my condition. I found it really helpful and came across a few people that have the same condition and other people who have had similar surgeries have all been so supportive. It's also nice to know that you are not alone.

I had the same operation but I am a little further down the road than you. Please feel free to ask any questions. I will be more than happy to answer anything you need to know as I had mine at the beginning of July. I know that you must still be in a lot of pain but just wanted to reassure you that it does get better.

How is your healing going? Did you have clips or stitches? How long did you spend in hospital? Not sure if you are sleeping through the night but that seemed to be the most uncomfortable time for me. I found that I could sleep better during the day so I stocked up on dvds and books for the night time.

Just wanted to tell you to be strong and keep positive. I wish you a speedy recovery and look forward to hearing from you.

Best Wishes
Roz

Hi Roz

Thanks for replying to my message. I am nearly 4 weeks post op and can say my wounds are healing nicely, although its still a bit of a shock to see the large incision like an L on my belly!! I had 27 staples altogether and these were really sore when i got them out 12 days after surgery. I was in hospital for 9 days and they were brilliant.
Funny you mentioned the sleeping scenario as it is the worst!! I am propped up with 8 pillows and one on my op side. I cannot lie down at all as my back hurts too much. I've been taking tramadol for weeks but feel its not really helping my back pain any. Did you find the sleeping arrangement was difficult too?? I see my surgeon next week and I am unsure what my checkup entails. Can you advise?

Its great to hear from others like myself and what a body shock we have all been through. Was it the contraceptive pill that damaged your liver?

Take care Sarah xx

Hi Sarah

Like Roz, I'm a member of the big scar club too. One thing I found useful was to try to sleep flat after a few weeks of post-operative recovery. It took a bit of mental toughness to do away with all those comforting pillows but eventually it did feel better. My experience was that back pains persist for quite a while - this is mostly "referred" pain - coming from your internal organs rather than the back muscle itself. But it hurts and it is tempting to keep on and on with the tramadol - even though it seemed to me to diminish in effect as the days went by.

I also slept whenever I felt I could - during the day if need be. It is when you are asleep that the healing takes place.

If you can cope with the pain to some extent, you might want to ease back a bit with the painkillers as a regular dose - taking them only when you have a bad pain attack. I saw it as getting back in control of the situation and a step back to normality. It is a slow process but you will get through this phase. I found it helpful to keep a diary of how I was feeling and when I flicked back a few days and then weeks it was easier to see that I really was getting better.

Best wishes
Tim

Hi Tim
Good to hear from others on this site. I have also read your story and you have certainly been through the mill! You are a very brave man!
Thanks for your advice on sleeping but I have found I cannot lie back as it is too painful on my back and side and I have also found I am like the hunchback of notradam!! My posture has gone to pot and can't possibly stand up completely straight. I have found my back pain happens certain ways I move and it has felt like an electric shock going through my middle back and it feels like its collapsing on me. I do ask myself if the tramadol is actually taking effect and helping me anymore. My doc prescribed me anti-flammatory tabs but i am not taking them as i am on other medication to calm my nerves.
I guess I have to be patient and let the natural healing take its course. I am so glad to have came across this website and it is reassuring to speak to others who have gone through the same op and giving good advice.

Take care of yourself
Sarah xx

Hi Sarah,

Nice to hear from you. In answer to your question did the contraceptive pill damage my liver the answer is yes. I did not have any clue that there was a problem until I came off of it and my body went crazy. I posted my story on the 28 July 08 a few weeks after my op.

I am so sympathetic to your sleeping problems and your scar. It is a lot to deal with at one time. In regards to sleeping I suggest that as each week goes by you try and remove one pillow (comfort permitting) and slowly start to try and sleep in the normal position. I found that I had back pain at the beginning and I believe this had a lot to do with the position that I was sleeping in. My Sister kindly brought me a reclining chair this also helped me.

When you go back to see you surgeon make sure that you mention your back problems and they might try and change your medication. Also what I did was write down a list of all the questions that I wanted to ask so that I didn't forget once I got there and made sure I asked all of them.

Don't worry about the way that you are walking. I had exactly the same problem. I had to ask for some advice and Tim and Angela were both wonderful and have been so supportive. As for walking upright I am not sure how long it was supposed to take as unfortunately I got an infection. What I found helped me was after about 1 hour of taking my pain killers I would try and stand up as straight as I could. I tried to do short walks and gradually you will feel your correct posture return.

Lastly be aware if the crazy itching that will take place soon. Although irritating it is a really good sign as it tells you that now you are on the way to healing. Just to let you know that Tim and Angela have both been supporting me through my difficult time and I would like to offer you the same support.

Best Wishes
Roz
x

ps: Don't worry you have completed your first month and I found that one the hardest. Keep your chin up as each day that passes should get easier. I found that being in pain for so long started to make me feel a little down so try and keep positive. Little did we know what would be the consequences of taking the pill! I still feel a bit upset by it as nobody ever warned me that this might be a possibility. (If every you would like to talk then I can give you my e-mail address and we can exchange numbers). No pressure just a thought as I know that recovery can be a bit of a lonely road.

Hi Roz

I have read your story posted on the website and your op was just like mine! I seen my surgeon yest and he told me I had a FNH different to an adenoma which he assumed it was before the surgery. I asked some questions on future pregnancies and if it could return. He said it was unlikely it would return but to use some other form of contraception. I was thinking I would get the coil once I am back to normal. Like you say who would have thought the pill would have damaged our livers so severely that we needed a resection!! I was on Dianette to get rid of mild acne and I have since read this pill is banned in America. Out of interest what pill were you taking? I was also on Marvelon for years before I changed. It does make me angry that docs say its rare when there must be others like us out there although we are the lucky ones who have been treated!

Are you back at work yet after having your op in July? I have a sick line for 3 months which takes me up till the new year. Hopefully I will be well enough to go back but I can see it far enough the way I feel just now.

The pain is still there (sides and back) but trying to keep off the strong painkillers as its not doing much good. Only morphine killed the pain but it makes you feel sick although it did work for me in hospital. I will try your advice and take 1 pillow away to see if I can lie down any further.

Best regards
Sarah xx

Hi Sarah,

How strange I too was on both Dianette and Marvelon for years. My doctor kept changing them every few years as I had very heavy painful periods. Do you know why these pills were banned in America? Since doing some research I found that this has been happening in America for quite a few years. I looked on the warning info on the pill and it says that it is possible to get liver disease but they are not specific.

I have been off work for so long that they had to let me go as I was on long term sick leave. They have told me that if I am well enough I can apply to them again but I am not sure what my next stage is going to be. As we were trying to get pregnant I may have to concentrate on that. I am not sure but I may now have to have fertility help in order to conceive.

Try to gradually take less and less pain medication. I found that because I was on them for so long they were not as effective.

Which hospital did you have your operation? Are you based in the UK? Good luck with the pillows. Just take a deep breath and relax and you will find that it is not as bad as you thought it might be.

Kind Regards
Roz
x

Hi Sarah/Roz

As u can see i have have posted on here and i to had a liver resection re the pill! i am now wondering after reading your posts about which Pill you were on i was on Dianette for a year and then microgion could they be a link re the dianette!
I had my op 4th June 4 months ago i am back to work but i do still get pain and i have really bad itchy thing going on the hospital have said its nothing to do with my liver as my bloods came back that liver was functioning as it should and the scan was all ok but im not so sure i come up in big red hives and the only thing that helps is priton daily.
I never had this B4 i had surgery, someone told me it takes approx 18 months for the liver to grow back and in the mean time i have to put up with the itchness!
Take Care

Caroline

Hi Ladies

How interesting to read that you both were on dianette and another form of pill - looks like there is a definite link here. Had we known that the pill would have caused us to undergo such major surgery we would never have gone near the pill in hindsight!

Roz good luck with conceiving. I had my son by caeserean last year and he is now 1.5 years. He is a wee cutie and the apple of my eye. I cant see hub and I having anymore after this but who knows what's round the corner.

I am from Scotland and had my surgery at the Edinburgh Royal Infirmary -what a fantastic hospital and I couldn't fault their expertise and the staff were so friendly and put me at my ease. They specialise in Liver transplants and are the only hosp in Scotland that carry out these procedures. Thankfully my surgeon was the top guy who carries out liver transplants and is a wonderful man. I am assuming most people on this site are from England.

Caroline - I hope you can get rid of the itchiness as it drove me mad but it was before I had my surgery and this is how it all started. My surgeon told me the other day that the liver regenerates within 4-6 weeks!. I am now experiencing terrible sharp pains where my liver is and I am 4 weeks post op, just hoping it is working ok and is regenerating - the pain does come and go and moreso when I lie down. I see my surgeon in 6 months time. Has anyone else had this type of pain?

Please find a link to a website which I found whilst reading about dianette. I have also posted on this site. http://www.verdicts.co.uk/womens_interest/sexual-h ealth/contraceptive-pills/review-4577.html

Best Regards
Sarah xx