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Subject: Pregnancy, Fibroids, Heart Problems
Dear Hope, The sad part is that 4 days after delivery I had severe heart failure and was diagnosed with a leaking mitral valve. This was a terrible shock to me since I had never ever had any symptoms nor been sick in the past. I guess it just proves that sometimes the things we worry about are not concerns but the things we don't' think about are the ones we should be worrying about! I am now being monitored and doctors need to decide whether I can proceed with another pregnancy or whether I will need to have open heart surgery to repair the leaking heart valve before I try again, and this would of course delay things a long time. I do have other fibroids and I hope they won't be an issue in another pregnancy, whenever that happens. I shall keep you posted and I hope to continue getting the invaluable support and advice provided by the Uterine Fibroids forum you moderate. I take this opportunity to express my sincerest gratitude to you and to all at the fibroid forum for being such a wonderful source of information and support. May you go from strength to strength. (April 7, 2008 Annelie)
Subject:
Fibroids and Pregnancy
Hope,
My little Girl decided she could breathe yesterday!!! She's 10 weeks old now and was on the full ventilator until yesterday. Out of the blue she started breathing and they extubated her yesterday. She now weighs 2 lbs 12 oz and has BPD, had surgery last Friday for ROP and has a PDA, which will need surgery too. They are surmising that the steroids she was given after the eye surgery gave her lungs a boost, so it is possible it may be short lived. However, I saw her face for the 1st time, without
all the tape all over it and she CRIED! She has never been able to make
any sound at all until yesterday because of the ventilator tube. I am so
happy!!!
Friday, June 23, 2006 - 1 lb 4 oz Baby GIRL!The OB/Gyn that did my
surgery, in a massive teaching hospital, said it was one of the most
challenging surgeries that she had ever done. Despite all of this,
understanding what I now understand about how miraculous it was that I
ever got pregnant, I would have gone down exactly the same road.
I would not have terminated and I would have taken the risks that I ended
up (naively) taking. ( I wanted to give you an update. My tiny baby girl was delivered 16 weeks early on 5/30/06. She weighed 1lb 4oz and measured 11.5". The Doctors didn't think she would make it through the night, but here we are 3 weeks later and she is doing as well as she possibly can. My waters broke, and although I didn't actually realize that was what it was as I had so little fluid anyway, I went to the hospital. By that evening I was having contractions every 2 minutes and every time I had a contraction the fibroids were crushing the baby’s head, so they decided to take her out. I had a C-section and then a myomectomy to remove enough of the fibroids to put the uterus back in. Initially they removed 14 fibroids weighing just short of 3 lbs, in 5 hours of surgery. Unfortunately 2 days later my uterus had become infected and I was running a fever. The decision was made to give me a hysterectomy. I had a hysterectomy on the Thursday morning and felt so much better. Overall I had 2 days in intensive care and 14 pints of blood. I can't say enough wonderful things about all the people who helped me, including the anesthetist who swapped operations so she could also do my second one, my obstetrician who came back in after working a day shift to do my C-section, and all the wonderful nurses. My Baby Girl will
remain in NICU for a few months and the nurses there are so wonderful too.
I go to visit her every day and I get to "Kangaroo care", so I sit with
her (and all her tubes) for a couple of hours - it's a wonderful feeling.
I have changed her diaper and she is now on full feeds of my breast milk
and handling it well. She has many preemie issues such as fluid on
the lungs and potentially a heart murmur but she is fighting every day and
I can only hope that she pulls through. Regardless of what happens,
I am so glad that I did not terminate. This tiny little person has
given me a completely different outlook on life.
Monday, February 27, 2006 I did
ask the Specialist about what I should and shouldn't be doing. Bed
rest would be a nightmare for me as I have a farm and need to feed the
animals, etc. My Fiance has been here for the last 3 weeks so that
has been a godsend as he has been doing all the heavy stuff. I
prepare the food and he carries it out to the animals. The doctor
said that a lot of people would go on bed rest but that the reality is
that it probably doesn't make much difference as to whether or not I
miscarry. I am feeling positive today as I have been bleeding
yesterday and today so am hoping that has alleviated some of the blood
that was near the fetal sac.
Thursday, February 23, 2006 I thought I would update you on the events of the last few weeks, which have been a combination of wonderful and horrible. I went for a second opinion, a fertility doctor, and he basically recommended against the termination as he was concerned about my ability to conceive again after the myomectomy. He did a scan but his equipment was pretty poor and he couldn't see much, so he took a blood sample and said he would check the HCG levels again a couple of days later. He told me that the levels should increase exponentially. A couple of days later, he checked again and the levels were the same, at 100,000. Of course my immediate reaction - given what he had told me to expect, was that the fetus had stopped growing. I checked some info on the Internet and it implied that in fact the HCG levels even out at between 8 - 10 weeks so I felt a bit upset that they hadn't brought this to my attention. He sent me for another set of scans, on a Friday afternoon, and the technician first wouldn't allow a friend to accompany me and secondly turned the screen right away so that I could not see anything. When I asked what the situation was, she refused to tell me, when I asked to see the screen she refused to show me. When I asked when I would get the results, she said "Monday". I lost it at that point, this was my body and I was paying for this and I was expected to calmly wait all weekend to find out whether or not I had miscarried. After a lot of arguing and us refusing to leave they called the doctor who said it was OK to tell me that it was still viable. Relief was unfortunately short lived. The following Monday I started bleeding profusely, it was almost like I was peeing blood. Of course my immediate reaction again was that I had miscarried. I went to the ER early on Tuesday morning where miraculously the fetus was still hanging in there and was a pretty decent size with a good heart beat. I came home and went to see the Obstetrician the same day. They did yet another scan and told me that the baby was now 2.6cm with a heartbeat of 176bpm. The Obstetrician then told me that I needed to go to a high risk OB in future and she would refer me. On Wednesday I bled again and I stayed in bed and just hoped that it would stop, which it did. Yesterday, a week after my last appointment, I had the appointment with the high risk OB, it was good and bad. On the positive side, I could actually see the fetus moving it's tiny arms and legs!!! Wow, that was amazing. It is now 4cm (it has grown 1.5cm in a week!) and has a good heart rate. Unfortunately there is a massive blood sac around the outside of the fetal sac which means that the connection to the uterus wall is very tenuous. Additionally the fibroids seem to have grown significantly, with the largest one now being 12cm x 10cm x 9cm and 4 - 5 other ones all being between 7cm and 9cm. There are many other smaller ones that they didn't measure. The OB said that she didn't want to put percentages on it but she was "concerned". She was really great, sat and went through all the previous doctors tests and results and probably spent 45 minutes explaining to my Fiance and I the potential outcomes and risks. She didn't seem to really know why I was bleeding other than it might be a prelude to a miscarriage. It's sickening - I can see it moving and it seems so healthy (of course, what do I know!), it seems so unfair that the environment that it is in is so rotten. I have zero pain or discomfort, I just have a big tummy. I'm not a big person, only about 130 lbs normally so everyone seems amazed that I was oblivious to these fibroids, but the rate they have grown at is incredible. The only other thing I left with, of course by this time only hearing a fraction of what she said, was that if I did manage to keep it, I was likely to have a lot of pain as the fibroids either degenerated or bled into themselves, there was no clear line for them to do a C-section so it would have to be a bit of a funny line and any surgery would have to be carefully done with ultrasound to avoid hitting a fibroid. The other doc apparently referred me because she does not practice in a hospital that has a large bloodbank. So, all in all I am really looking forward to all of this!!!
No, seriously though, I am taking every day as
it comes. I can't worry about things I have no control over. I
saw an amazing thing in the scan that I would never have had the chance to
see - a tiny baby with little arms and legs moving around. I just
want that sac of blood to disappear!!! Friday, January 27, 2006 I am 39 and although have wanted children for the last 10 years or so, I thought it would never happen. The radiologist that did a scan on me earlier this week said it was a "miracle" that I got pregnant as I am apparently so full of fibroids. It's amazing to me that I could have been oblivious to them all these years. I have always been healthy and was brought up in an environment where you didn't waste the doctor's time unless you were virtually at death's door. Looking at the symptoms I now realize that I have probably had these for years. It was not unusual for me to wake up in a pool of blood while menstruating, and I thought this was normal. I have had lower back pain for years, but I run a small farm (as well as working full time) and blamed it on too much sitting trot on the horses, lugging around too many hay bales or the driving of our old tractor with terrible suspension. I would have a warm bath and get on with it. I had some more scans today where they measured and counted them. The technician wouldn't tell me how many or how big, just said they would send the report to the doctor. She did give me a couple more photos and unfortunately the largest one (9.7cm x 7.7cm x 7cm) would appear to be right next to the fetus with another dark area on the other side, which I suspect is another one. The obstetrician has recommended a termination, a myomectomy and then try to get pregnant again. I am going to have a more serious discussion with the "second opinion" about the real risks to me. If I miscarry then I will be desperately sad, but I will have tried. If I terminate I suspect I will always wonder if it could have survived.
This emotional roller-coaster is so difficult.
My Fiance and my family lives in other countries, thank goodness for good
friends!
Monday, February 11, 2008 Hi Hope, I don't know if you remember me...it's J. from Newport, South Wales, UK. I gave birth to my daughter in October 2006 following a problematic pregnancy due to fibroids. Well....I'm pregnant again!! I'm 10 weeks pregnant and things seem to be going well so far, touch wood! I've had a few niggles but no pain like I had with my first pregnancy. The fibroids are still very much in the picture. There are three (3) there at the moment. The biggest one is 7.5cm x 6cm, then there's a 5cm x 5cm and lastly a 2cm x 3cm one. I saw my Consultant last September, prior to becoming pregnant, as the fibroids were starting to become a nuisance and cause me lots of grief. She suggested a myomectomy, but I decided against this when she outlined the risks of hemorrhage & possible hysterectomy. I felt that as I had had a positive outcome following the first pregnancy, I would take my chances and try for another baby first. I came off my contraceptive pill in November and we decided to start trying for a baby, once I had a normal period. We conceived the first time of trying and found we were pregnant on 4th January!!! We were amazed! I had an early pregnancy scan at 6 weeks to check the baby was attached to me and not to a fibroid...which it was! Hurray! I have also since had a scan at 8 weeks which showed that all was well. I am due my next scan and booking appointment at 12 weeks on 28th February, so I'll let you know how it all goes. Just wanted to update you, as I remember how much your website helped and reassured me when I first found out I was pregnant with my daughter and if my story can help someone else that needs to hear something positive regarding pregnancy and fibroids, then it'll all be worth it. I'll keep you posted!
Thanks again for being there.
Hi Hope, Just checking in to say “Hello”. I don't know if I ever replied to the email you sent back to congratulate us on our daughter’s birth.
Well all is going really well. Motherhood is brilliant! I'll probably even do it again, even though we had all the complications. I think it helped because we had a positive outcome with our baby, next time I think I would have more confidence as I now know that it can all be ok. I had my fibroid scanned back in April and it measured 7.5cms by 5cms. Nothing compared to when I was pregnant!!! However, I'm now much more aware of it being there than before I was pregnant. Where as before I would only have symptoms when I had my period eg. very heavy and lots of low back ache. Post pregnancy, I have found that something as simple as walking up a small incline will make my back ache, my periods are still very heavy and I am unable to lie completely flat on my front without it being uncomfortable. Never mind, I'll survive!!! I'm waiting on an appointment with my Consultant Gynaecologist to discuss a possible embolisation of the fibroid. I'll wait and see what she thinks. Anyway, I've attached a photo of our daughter so you can see how well she's doing. She's amazing! The funniest little thing ever! Hope, you can use our daughter’s photo for the website. We don't mind. We see it as your site gave us hope when we didn't know what we were facing and if we can help someone else see that there is a light at the end of the tunnel, then that would be fantastic! I can't believe 8 months has flown by so quickly!!! Where does the time go???? Take care.
Our Baby Girl arrived at 09:48 on 10th October 2006 by c/section weighing 8lbs 10ozs. During my c/section my consultant took the whole of my uterus out to examine the fibroid. Afterwards she said to me that she was amazed at how degenerated it was and she'd never seen one that broken down. She also said she wanted to show me it! I'm glad she didn't!!!! She said it was no wonder I had had all the pain that I experienced due to it. Anyway, I'm due to have a scan in 3 months time to assess the state of the fibroid then, but my consultant anticipates that it'll probably be causing me very little problem by then. Again thank you so much for having such a positive web site and not just reporting all doom and gloom regarding fibroids. We started out only having negative information about our situation and you helped change that...thank you so much.
Love and best wishes.
All is going ok at this end of the world. I can't believe we've managed to get to 37 weeks and our baby has gone off the size scale!!! At 35 weeks and the baby was measuring 41 weeks and 4 days! I had put on 6lbs in 2 weeks and it seemed that the baby was having a growth spurt. I saw my Obstetrician today and she has said that the baby is weighing in at 3.8kgs (8lbs 8ozs) and she's happy for me to go with my wishes for a vaginal delivery naturally, if it happens, but I have been booked for an elective c/section on 10th October as she is expecting the baby to be around or over 4kgs by then. She has booked the section for a safer delivery, due to the risk of shoulder dystocia and other problems related to bigger babies. It seems ironic that the baby is now going to be a big strong baby, when we were worried at 26 weeks and going for steroid injections incase he was going to come way too early! So all is going well at the moment. They are still expecting me to hemorrhage and possibly have a retained placenta due to the fibroid, but I am not too worried as they will (hopefully!) be prepared for that when it happens. Well hopefully the next
time I email you it'll be to tell you the good news that the baby has
arrived!
I'm now 26 weeks pregnant and this week I have had 2 steroid injections of 12mg Betamethasone 24 hours apart. This is to boost the Baby’s lungs, bowel & gut incase he/she decides to make an early appearance. I've since had an awful head cold I just can't seem to shift, I expect it'll go eventually.
Other than that all is going very well here. We had another scan which
showed that the Baby now weighs 2lbs 4ozs and is growing very well for the
gestational age, which pleased us to no end! Thanks again for being
there.
June 16th: Our due date is 17th October, but my Obstetrician
seems convinced that the Baby will come earlier. However, saying
that she also said that she's going to make me work hard this pregnancy
and keep the pregnancy going as long as possible, to give the Baby the
best possible chance.
June 5th: We have had about 3 or 4 scans since (1 was very intensive, lasted a good half an hour and they checked my kidneys as well as everything else going on in there!) and there has been no mention since of the fibroids being within the placenta! Hurray!
We visited my Obstetrician on 31st May and she scanned me again and
said that the fibroid that was giving me lots of pain had stabilized,
which pleased us all. However, it
remains the same size. She also doesn't anticipate that it will
give me much trouble for the time being either, which is also good.
She was also very happy with the Baby who was waving at us on the scan
and wriggling around non-stop! So instead of having our two week
appointments, she's happy not to see us until 10th July, when I'll be 26
weeks and she said she'll being giving me the steroids for the Baby,
incase he/she decides to come early.
So all good news from that session! Makes a nice change to come
out quite relaxed instead of a worried mess like usual and not feel
we're living from appointment to appointment.
We're enjoying some beautiful (but very rare!) sunny weather here in
Wales at the moment, so I'm just getting ready to go out and meet up
with my parents for an early lunch.
Take care and thank you again for being there.
Hi Hope, I've just been allowed
home from the hospital today having spent 5 days as an in-patient due to
pain, which has now (thankfully) settled back to an ache again! I'm
18 weeks pregnant tomorrow. I can't believe how quickly it's flying
by! I was re-scanned the day after my admission and they found the following: "ULTRASOUND OF THE
PELVIS - 5.12.06 I had an appointment with my consultant obstetician this morning, who scanned me and found the largest fibroid is around 120mm, where it is necrosing. The two smaller fibroids are new ones that have not been found before. I was examined vaginally and my cervix was closed, but my consultant thinks she may have to stitch it later in the pregnancy if the pressure becomes too much. I am also going to be having steroids at 26 weeks pregnant, as they think the baby may decide to come early. In the mean time I am still off work, I've been given another sick note for two months. Oh well.......at least there's one good thing, the baby is extremely active on nearly every scan and I feel him/her move several times throughout the day, which is fantastic and hope will continue to grow and get bigger and stronger every day. Thanks for being
there. Monday, April 24, 2006 Hi Hope, Thanks so much for sending on those other story contacts for me to read. I'm due to see my Consultant Obstetrician tomorrow, will let you know if anything interesting happens! I have had an ante natal visit since I first wrote to you and they have found two new fibroids buried right within the placenta. It almost looks as though the placenta has wrapped it's self around the two of them like a huge Mcdonalds 'M'! These new fibroids are in addition to the huge one that is already there. I actually got quite upset at that scan when I saw that and worried of the outcome for our baby. The Senior Registrar however was excellent and reassured me to no end. She said she wasn't overly concerned about the baby as he/she will probably find his/her own space amongst the fibroids. She was happy that the baby appears to be developing as it should (we were actually further along than we thought! We went by our last scan, which would have made us 14 weeks and 1 day and this scan showed 15 weeks and 4 days!). The Registrar also said that she would be more concerned about my health for the time being and how I was coping with the pain and discomfort. She said that I could be monitored weekly or fortnightly if I felt it would make me feel better that nothing was being missed. I said I'd discuss this with my Consultant, as I feel I am being very well looked after already and I don't want to become a pain to them!! Then thinking further along, she said we will be monitoring you closely, so we will be able to see if it is getting too congested in there and if we think the baby is likely to come early and when you are 26-27 weeks we will give you steroid injections to mature the baby's lungs, liver and bowel, just incase he/she does decide to make an early appearance! Anyway, mail you again
soon and thanks again. -
Monday, May 1, 2006I am a long-time fibroid patient. I was diagnosed 20 years ago, at the age of 31, and was told by two (2) doctors to undergo hysterectomy. I refused, since I wanted to have a child. Finally found a physician here in my area that followed me through a difficult pregnancy with an enormous fibroid (11cm), but successful delivery of my healthy baby boy (10lbs.6oz.).
I remember that at the time of my pregnancy there was the general concern
for miscarriage, etc., due to the presence of the fibroid. I
was aware that due to the increased hormones (estrogen?) of pregnancy that
the fibroid would probably grow larger. It did -- growing to about
11 and 1/2 cm at it's largest. |
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