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14 cm fibroid - 2006 (UPDATED) 14 cm fibroid - 2006 (UPDATED)

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  #1  
Unread 05-23-2006, 04:28 PM
14 cm fibroid - 2006 (UPDATED)

Hi everyone,
Sorry if this is so long - it is my first post and I only have a week to make BIG decisions!!

I am 44 years old, have a 14cm fibroid and am scheduled for a hyst on June 2, it is rushed because last week I went in thinking I had bladder infection and it turned out to be my fibroids leaning on the bladder. And this is the only time I can see in the next 2 years where I will have time for recovery (I go to college).

I had a very successful bladder suspension in 1992, I have taken the pill over the years even had a Norplant for several years. I have two girls aged 16 & 17 yrs old and both were delivered c-section. I also had torn cervix reconstructed in 1992. Then I developed Meniere's Disease (inner ear) in 1994 which the first acute attack was brought on the night before my period they said the water retention was so bad it caused a tube in my ear to explode! That was the first clue something with my hormones was amiss. I also have never had a day in my life where I didn't have acne on my face, neck, chest, back and arms! 44 and still having acne. My derm said it is a good thing, as my skin is young looking and all the hormonal grease has kept the wrinkles and lines away so I look alot younger. I also have rosacea. Again, hormones causing problems.

Then there are the mood swings and tears, I hate them and they have at times ruined my life to the point I now put PMS warnings on my calendar because when I am in the midst of the mood swing I never stop to think, "am I upset because of the situation or are my HORMONES making me upset?" Usually after a temper flare at the kids or argument with my husband, the hormones subside I look at the same situation and think, "why did that even bother me?". This temporary insanity is unsettling.

My fibroids have had me to the ER several times with scary heavy bleeding, now I am not as scared about it, but wary. I am sure I don't have to tell anyone here about the big clots, too. It makes me not want to work out and not go to public functions during my period where I could get embarrassing leak (and have had that happen several times). My periods are regular and only last about 5-6 days, so other than the fact I have 2-3 days a month where my period is scary-heavy, there are not enough symptoms to warrant a hyst. If I take Motrin right when I feel the first pinch of cramps, I don't get the cramps, if I wait, it is unbearable pain. I always have Motrin on hand so no problem there either.

The biggest problem is my bladder, it is getting squashed by the fibroid. I feel pregnant, the fibroid is 14cm and even when I sit down I get that feeling like my guts are being shoved up under my ribs, like you do when pregnant. I have to wear depends to exercise, I leak bad. If I cough, sneeze or laugh, I leak. I recently had the flu and when I puked I wet my pants, this was disturbing! It feels like I am about to get a bladder infection, but I never actually get one. This is the biggest reason the doc recommended hysterectomy.

I was looking here for other options, I did find a website that has pushed me back into the hysterectomy side - THESE PHOTOS!!!
WARNING the hospital links go to actual pictures of fibroids and what they look like and you can really get a feeling for how big they are - and these are the size I have!! SCARY LOOKING THINGS! I looked at the pic and first thought was "yuck! If that's what's in me then get it out of me!".

I am now struggling with whether to take the ovaries or not. As stated above I have severe hormonal problems, the doc says the ovary removal will allow me to control my hormones and help alleviate the symptoms I've been having - but what if it doesn't? If I am producing too many hormones, then why would someone who suddenly got less hormones from ovary removal have the same symptoms as me? Weird! I have a hard time believing I can control a complicated hormonal system that God created by artificial means. I can’t even get my vegetable soup recipe to come out tasting the same every time I make it, so it’s hard to believe I’d be any better with a hormone recipe.

I haven't even touched on the fact I think my uterus/cervix is contributing to good orgasms and am despondent at the thought I could lose my love life.

I'd love to hear from some long-term people - how is it many years later? The women in my family live long lives, many of my aunts are still working/volunteering in their 90's!!! So long-term I don't want osteoporosis or heart disease to get in my way. My mom is diabetic so it is hard to use her heart problem as a guide. My sister has had breast cancer but she also is addicted to Nicorette gum and chewed them for over 8 years and smoked before that so it may be environmental rather than dna. My other sister had cervical cancer. OH AND ANOTHER SCARY THING: I just had a colon polyp removed – 1cm – yesterday and don’t have the results on that one yet, but now that I have had one, I wonder if I need to think of ovary removal to reduce cancer risk.

I am a healthy weight, exercise regularly, have low blood pressure, PERFECT cholesterol numbers, my doctor said I should hang them on the wall and that I would never die of a heart attack...so which is best for me - take the ovaries or not? It's a crap shoot! I don't do well with uncertainty, of course I could easily be hit by a bus the day after surgery and so none of this matters anyway!

Oh well,
Good luck to everyone, I know you all are going through the same things - and I hear ya!
  #2  
Unread 05-23-2006, 06:27 PM
14 cm fibroid - 2006 (UPDATED)

Hi MostlyUndecided,

In pre-op, I had 2 large fibroids measuring 15 cm total so I can synpathize wit your situation. I too was having heavier periods and bladder incontinence. I did (3) months of lupron shots to shrink my fibroids enough for a LSH, a less invasive hyst.

Did your Dr. go over what type of hyst he is recommending?? Here is a Hyster Sisters link that goes over the ~different~ types of hysts and questions to ask your Dr. in pre-op. Just scroll down.

http://www.hystersisters.com/vb2/view_preop.htm

I am 2 yrs. post-op now and I am still very pleased with my surgery results. I was 46 when I had my hyst and I decided to keep my ovaries since they were healthy and ovarian cancer does not run in my family.

Possibly if you decide to remove your ovaries, you could remove only one?? Could help to lessen PMS symtoms in post-op and you could still retain one ovary. Just a thought.

Best wishes. We Hyster Sisters are here to help if we can.

Best wishes

Mary :fluff
  #3  
Unread 05-23-2006, 08:57 PM
14 cm fibroid - 2006 (UPDATED)

Thanks Mary,

It is nice to see someone who is happy with their results. I see alot of people who left in their ovaries are happy, I wonder if they have done a study of satisfaction with hyst based on whether ovaries were left in or not.

I think I am having a Total Abdominal Hysterectomy, I think, you know the doc wasn't very forthcoming with details, i had a list of questions and he doesn't go into much detail. I think he assumes I don't know the lingo, keeps it simple, although he said I can call anytime and he does come right to the phone when I call with questions.

Tomorrow's questions are going to be
1) what type of hysterectomy am I having and
2) more on the results of the ultrasound, I'd like to see the ultrasound results myself as he was too vague in his descriptions. Didn't they take pictures that I can see? He actually scheduled my pre-op visit to go over all this THE DAY BEFORE the surgery! Doesn't give one time to do anything! It's mostly my fault for not being able to wait for a later date (because of my school schedule next opportunity would be 18 months at least maybe 2 years - and being out of work for the one year of school I have left is already a hardship on the family).

I tried to make a second opinion visit to another gyn that I used to go to, who put in his profile that he is specializes in hysterectomy alternatives. But they couldn't get me in before my surgery date...although the receptionist told me to call on Thursday and if there are any cancellations she will try to get me in on Friday, she is expecting a few since it is a holiday weekend. I hope I get in to see him. If I don't go for the June 2nd date, there isn't another date available that will get me recovered before I start school in the fall. Plus I had hoped to take my kids on a big vacation in late August, the only vacation we'll be able to take this year because of conflicting school schedules.

I also want someone to do a pre-op hormone workup. I am interested in some of the pre-menopause symptoms I have that indicate a lowering estrogen level, like hot flashes that hit the day before my period starts; yet I have other symptoms like this growing fibroid that indicate higher estrogen levels. I think knowing those levels and how close I may be to menopause will help my decision.

I'll keep updating as I find out more this week...I also wish I could get the colon polyp biopsy before surgery but they said 3 weeks and surgery is next week.

The photos were a help to me in making my decision as they didn't look at all what I envisioned and were bigger than I imagined, now I can see why I am having some of the problems I am having.
  #4  
Unread 05-24-2006, 12:34 PM
14 cm fibroid - 2006 (UPDATED)

Hi Mostlyundecided,

You may want to ask specifically to have your testosterone levels checked. Some of your symptoms sound like it could be a little high. It is easily treatable with medication. I know, because I take it.

Let us know how your appointment goes.

,
Kay
  #5  
Unread 05-24-2006, 03:27 PM
14 cm fibroid - 2006 (UPDATED)

Ask about an H where you keep the cervix and ovaries.

I'm not sure that removing healthy ovaries is so wise. But I'm sure there are other opinions. Your hormones will be less, I think, without the ovaries which means more menopausal type symptoms. You should ask what the difference might be.
  #6  
Unread 05-25-2006, 10:51 AM
14 cm fibroid - 2006 (UPDATED)

Thanks, I will do that. I have an appointment tomorrow with a second opinion doc. I contacted a plastic surgeon about having a tummy tuck at the same time as the previous two c-sections left a hangover I hate. Then i found a gyn who has worked with him in the past and he highly recommended.

I needed the 2nd opinion anyway, so why not find a guy who could do the tuck with they hyst? My current gyn doesn't do them, said it was too much hassle planning.
  #7  
Unread 05-25-2006, 11:06 AM
14 cm fibroid - 2006 (UPDATED)

Hi MostlyUndecided,

I agree with what Funnyesq said. Possibly check on a SAH (Subtotal Abdominal Hysterectomy). It retains the cervix and ovaries (if decided).

I was a good candidate to keep my cervix since it was sturdy and I had had normal pap smears for years. I am still very happy with my decision. In pre-op, my Dr. felt the cervix helps with future pelvic support and with sex. Both have been true for me.

You can get pros and cons on leaving the cervix from ladies and maybe just one more question to ask your Dr.

Best wishes,

Mary
  #8  
Unread 06-04-2006, 08:20 PM
14 cm fibroid - 2006 (UPDATED)

I have now gotten a 2nd and 3rd opinion.
The 2nd opinion said I had small fibroid, not 14cm and recommended I have a CMT for the bladder to see what is causing leaks and a novasure oblation treatment for the bleeding. He did not think I needed a hysterectomy at all and said when he does do hysterectomies he recommends keeping the ovaries. He gave me an exam but did not do another ultrasound, rather looked at the ones I brought.

The 3rd opinion did another vaginal ultrasound in his office because he said the ultra sound films I brought were poor quality and hard to read. He said I had NO FIBROIDS and a NORMAL SIZED UTERUS!!! No hysterectomy needed. He recommended a Thermasure oblation treatment for bleeding and said it had less complications than Novasure. He did not do an exam, instead had another vaginal ultrasound done and from that told me not only didn't I have fibroids but I also didn't have a prolapse like the original doc told me or a tilted uterus like the original doc told me.

The 1st original doctor who told me I needed a hysterectomy and had scheduled it for Last Friday, called me to ask why I cancelled the surgery and was stern and like "you need this, don't put it off". He used scare tactics like saying 1 in 90 chance of getting ovarian cancer and that even with novaasure I could still need to have hysterectomy anyway, so why bother. And hormonal concerns post-surgery shouldn't worry me as there are lots of better alternatives than what leaving the ovaries in leave. I hadn't seen the 3rd opinion yet when he called or I would have been asking about why he said I had fibroids when it looks like I don't.

Should I go revisit this doctor and confront him? Just never call or go there again - as in RUN!

I don't know who to trust, I decided to wait another couple of months and try natural bio-hormone therapy and see if things improve, and get the CMT Bladder check at a urologist and wait it out until at least I stop freaking out over all this conflicting information.
  #9  
Unread 06-04-2006, 09:21 PM
14 cm fibroid - 2006 (UPDATED)

  Quote:
Originally Posted by mostlyundecided
I have now gotten a 2nd and 3rd opinion.
The 2nd opinion said I had small fibroid, not 14cm and recommended I have a CMT for the bladder to see what is causing leaks and a novasure oblation treatment for the bleeding. He did not think I needed a hysterectomy at all and said when he does do hysterectomies he recommends keeping the ovaries. He gave me an exam but did not do another ultrasound, rather looked at the ones I brought.

The 3rd opinion did another vaginal ultrasound in his office because he said the ultra sound films I brought were poor quality and hard to read. He said I had NO FIBROIDS and a NORMAL SIZED UTERUS!!! No hysterectomy needed. He recommended a Thermasure oblation treatment for bleeding and said it had less complications than Novasure. He did not do an exam, instead had another vaginal ultrasound done and from that told me not only didn't I have fibroids but I also didn't have a prolapse like the original doc told me or a tilted uterus like the original doc told me.

The 1st original doctor who told me I needed a hysterectomy and had scheduled it for Last Friday, called me to ask why I cancelled the surgery and was stern and like "you need this, don't put it off". He used scare tactics like saying 1 in 90 chance of getting ovarian cancer and that even with novaasure I could still need to have hysterectomy anyway, so why bother. And hormonal concerns post-surgery shouldn't worry me as there are lots of better alternatives than what leaving the ovaries in leave. I hadn't seen the 3rd opinion yet when he called or I would have been asking about why he said I had fibroids when it looks like I don't.

Should I go revisit this doctor and confront him? Just never call or go there again - as in RUN!

I don't know who to trust, I decided to wait another couple of months and try natural bio-hormone therapy and see if things improve, and get the CMT Bladder check at a urologist and wait it out until at least I stop freaking out over all this conflicting information.
1. Doctor number one should show you the photos BEFORE recommending anything. If he won't, move on. There is NO EXCUSE for a doctor who recommends surgery to NOT take the time to sit with a patient explain and show WHY it is needed. I saw my ultrasound photos and those of a normal uterus. It made sense that mine was clearly enlarged. The fact that another doctor claims that the first are "unclear" is a clue that doctor number one is a problem. Yes, there is a risk of ovarian cancer...we all have a risk of this. That is not a reason to have surgery.

2. I do not understand about all the ablation stuff, so I won't comment. If you understand it, great. Knowledge is your power.

3. I can't believe that one doctor says you have fibroids and another says you have a normal uterus. Is it possible you have a normal size uterus but very SMALL fibroids? If so what is it that you "feel" pushing your insides? Has THAT been explained? Is there an enlargement of something OTHER than your uterus which is the pushed feeling you are having? Has ANYONE commented on that?

4. I would tell Doctor number one, in a rational but serious tone that you have many concerns having sought 2 other opinions both of which said that your uterus was NORMAL size. If you had a 14 cm fibroid, your uterus would NOT be normal size. Tell him that he lacks credibility because he wouldn't show you or explain the ultrasound photos. He wouldn't take time to explain why the ovaries would be taken etc. Doctors SHOULD not recommend surgery unless absolutely necessary. Some are just a bit too knife happy. My doctor said take all...I didn't agree in taking that which is healthy. Second said, take uterus, leave ovaries...actually take most of uterus but leave cervix...this made sense. He took time to explain to insure my understanding. He said without symptoms I still could keep my very large uterus. When pushed the first doctor said the same thing finally. If it ever gets taken...doctor number 2 has the job in my book.
  #10  
Unread 06-04-2006, 09:25 PM
14 cm fibroid - 2006 (UPDATED)

  Quote:
Originally Posted by mostlyundecided
I don't know who to trust, I decided to wait another couple of months and try natural bio-hormone therapy and see if things improve, and get the CMT Bladder check at a urologist and wait it out until at least I stop freaking out over all this conflicting information.
As for natural bio-hormone therapy, why would you try this. Something about your bleeding? Is it abnormal? Are you peri-menopause. There are more natural things to try before bio-hormones which haven't been tested yet. I have had great results with fish oil and evening primrose oil for hot flashes for instance. Find out first if your hormones are out of balance. Try DIM which seeks to balance your hormones. Avoid microwaving food (hot plastic) as this releases toxins that act like estrogen and can create fibroids (peri-menopause women are especially vulnerable to fibroids)...avoid hormone infused meats...get organic produce and meats/poultry. Etc.
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